tag:blogger.com,1999:blog-26813049947113872942024-03-05T01:41:24.738-08:00Green and Bitchyjackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.comBlogger201125tag:blogger.com,1999:blog-2681304994711387294.post-15537900832913229742015-12-23T16:03:00.003-08:002015-12-28T23:12:25.847-08:00The Best Gift this Holiday.<div style="color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
Christmas is just gravy - our real gift came today!</div>
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We received a phone call from 'Lou's Dr. His IgF1 is 99 after a month off HGH. That's in the normal range!! He's producing his own growth hormones!! He's still on a heart monitor for the heart abnormalities that started about 9 days after quitting the shots that might be (unrelated) SVT (the pediatric cardiologists's working hypothesis) or that might be his extra sensitive body trying to adjust to the sudden loss of growth hormone (my working theory) Currently, there have been no more episodes since his hospitalization at Thanksgiving, and his energy and appetite have returned after the 1st couple of weeks off the shots. </div>
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As recently relocated people, I can share our news with friends and medical professionals who've known us for the last year, but nobody in our daily lives right now can possibly know what this means to us. I knew I could share it here and it would swell the hearts and overflow the eyes of so many ppl that have gone through this with us.</div>
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I am especially joyful to share it with so many that helped us so much through the darkest times. Our nurses and Dr.s, friends that helped with the fundraiser for the hospitalization at NJH, friends who held back the tears and tried to act normal when they saw his skin falling off. Friends that held back the tears and tried to act normal when they saw me falling apart. This is for all of you!</div>
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8 years ago we had a baby who was born breaking out in hives and bleeding from his GI tract because of the dairy in my diet and breastmilk. He was almost under 5 lbs before we got him to finally gain some weight. </div>
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By 18 months, he was allergic to the entire top 8 food allergens, everything environmental and barely gained weight or grew. </div>
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By 3, he was catastrophically ill. His sheets and pillows always had bloodstains on them, his skin was always falling apart, he could eat about 9 foods, he didn't grow, he lost weight constantly, he didn't sleep, he didn't play. All he did was nurse and scratch and cry. His IgE was over 12,500 when 0-120 is normal. </div>
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We didn't know why his immune system was attacking him like this. His Dr.s were testing him for leukemia, cystic fibrosis, genetic metabolic disorders and immune diseases. One specialist told us that he would have leukemia, lupus or some other critical auto-immune disease by 12 if we didn't find out what was putting his immune system into overdrive.</div>
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One specialist told us that a test came came positive for a rare and potentially fatal metabolic disorder called glutaric academia, type II. For 2 weeks of further testing, we lived with the reality that he might not survive childhood, no matter what we did. </div>
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Another specialist suspected EoE and wanted him weaned off all food and breastmilk and put on a feeding tube. </div>
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We lived in Dr.s offices and hospitals and if he'd slept for even an hour at a stretch, I know i would have had the breakdown that was trying to burst me at the seams. </div>
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When it started to leak out despite focusing every minute to keep my son alive and safe, what saved me from completely falling apart was the support from the people that stood by us. </div>
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Our pediatricians - esp Dr. Cheryl, who was there from the beginning, Dr. Dorsey, Dr. Bryzik, Dr. Elton, all of whom never doubted me when I described his unprovoked autoimmune flare ups. Dr. B, who took our calls whenever, wherever and whom we saw so much that my husband referred to him as "your Dr. husband" - and who also listened to my instincts and had an open mind about my unorthodox treatments.</div>
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Dr. Lowry, Dr. Doshi, Dr. Dekelbab, Dr. Aughton, Dr. Tulin-Silver, Karen and the staff at Physician's Compounding Pharmacy, Mya and the staff at Value Center Pharmacy... you all helped me process and learn and help our son and went above and beyond your professional standards and requirements in doing so. I absolutely attribute both my perseverance and his eventual diagnoses and recovery to the support system all of you formed for us - a more integral and frequently utilized one than even our families, at times! Speaking of family, Dr. Kaye and Dr. Pillow also helped us through this enormously stressful time that could have broken a lot of marriages. </div>
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<span style="text-align: left;">Every Dr. we consulted took one look at him and his test results and moved heaven and earth to write </span><span style="text-align: left;">long letters on his behalf - to get him approved by our insurance for new treatments, to get him into specialty hospitals, to get special genetic testing done, to do whatever he needed. I was treated like a colleague in his care and respected asset in diagnosing my son - and I've never forgotten it and I've never been able to settle for anything less ever since. For that also I sincerely thank you. </span></div>
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Our friends - who poured out their hearts and gave up their time and helped me process and untangle confusing symptoms for hours on end. Who stood by me when I was too depleted to give anything back. Who reached out to me when I became a hermit and never left the house with him. Who celebrated every hard-won improvement with us. </div>
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His open skin disorder was diagnosed by 4 and I don't hesitate one bit to give myself full credit for sticking to the soak and seal protocol I learned there like his life depended on it (b/c as far as i was concerned, it did) and thereby facilitating his nearly complete skin and allergy recovery. </div>
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By 5, his diet was miraculously expanded, his skin was like a glowing pearl, and his life was a whirlwind of trying to go to school part-time and manage the setbacks that environment gave him. </div>
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But he still wasn't producing growth hormone or growing. At 5, he was the size of an 18 month old. He wasn't even big enough to open the bathroom doors in his kindergarten room. At the time, Dr.s theorized that the same genetic aberration that left him unable to produce the skin protein he needed also left him unable to produce growth hormones. </div>
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We started the shots and he grew better than predicted. Now he's been on them 2 years without a hitch and advancing bone age prompted his specialist to recommend a 4 week trial off them to see if he might actually be able to produce his own. </div>
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Today, we learned that he is starting to!! Nobody that knows us today will understand what this means to us. This is the 2nd part of what was stopping him from having a normal life, suddenly righting itself. The 1st part, I devote my life to maintaining -and I'm teaching him to do the same. We give him the hydration and barrier his body can't make, several times over, every single day and night. But the growth hormone - necessary for not only growth and gain, but also well-being, optimal healing and heart and lung function - we didn't think there was anything anybody could ever do about that except make him take the shots (and all the risks) for the rest of his life. </div>
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The theory now - with 2 more years of medical advancements and knowledge - is that when an inflammatory process or response gets out of control over a long enough period of time, it suppresses growth hormone production - sometimes for years. We already knew that certain catastrophic life events make children stop growing like death of a parent, divorce, disaster, etc...and we also know that certain diseases also take such a toll that a child is left without the reserves to grow, like cancer and some genetic disorders - but there was little research into inflammatory diseases and their effect on HGH. </div>
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So, seeing for ourselves that it was apparently 'Lou's level of inflammation that stopped production of his HGH is confirmation that we have really calmed that down and returned him to such a state of normal, that his basic hormonal functions are returning. It's like a giant, retroactive paycheck for all our hard work. And I want to be sure and give everyone their percentage. I can't even begin to describe how it feels. Only a picture will suffice. </div>
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Along the way we've had our share of detractors. Friends have ridiculed us for the obsessive management of his environment that he needed for so long. Family has ridiculed and even shunned us because of foods we've had to cut out of our family's diet. People who should have known better have failed to keep him safe by (not) removing dangerous allergens that he came into contact with. I've been called a Munchausen mama and heard people gossiping that I thrived on the perception that I had a sick child. People have suggested his issues are psychosomatic and that he's just a high-strung, nervous personality - a hypochondriac. </div>
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I gave these people and thoughts no more time in our lives than I'm giving them in this writing - only a tiny percentage! The only reason I bring it up at all is because I found along our own journey that this is something very common to food allergy families and it sucks. </div>
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My best advice is don't let it affect you other than to fuel you to keep spreading education and awareness. Don't ever let it make you doubt yourself. Listen to your instincts. Nobody knows your child like you do.</div>
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More and more medical knowledge is showing that allergic and inflammatory processes have much more far-reaching symptoms and consequences than we ever knew. Giving your child with a mild allergy "just a little" of their allergen because of family pressure at the holidays is only harming them exponentially - even if you don't see an immediate reaction. Inflammation is cumulative, and once your bucket is so full it tips, it's almost impossible to get it back upright without turning your whole world inside out. If that means losing friends, so be it. If that means avoiding unsupportive family, your child's health is worth it. </div>
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Inflammation is an immune response. The immune system is almost entirely located in the gut. Healing and maintaining gut health is absolutely vital to everyone for optimal health, but it is critical to children with inflammatory and food allergy issues. In our culture, food = socializing. Be prepared for backlashing, undermining and ridiculing in your quest to eliminate the triggers for your child's inflammation/ allergies. </div>
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I've come from watching my child slip away more and more every day and fearing we would lose him completely to now receiving more and more confirmations of his returned health and functioning. We feel like we have a completely new child some days, he is such a different little person with his recovery. </div>
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We didn't know his horribly inflamed state was domino-ing into so many other important biological processes, even his Dr.s weren't sure - but had we listened to the pressure to "Let him have a little, you can just give him benadryl!" or "You don't need to remove all the carpet from your home, we'd just keep him on Claritin long-term!", I know we wouldn't have gotten the test results we just did and the confirmation of what a huge toll his allergic process was really taking on him. </div>
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It doesn't happen often, but this is one day I wish we were still in Michigan - his Dr.s there would be as thrilled as we are. It's not the same to see the puzzled smiles of the Dr.s here when we discuss his latest test results and they see me cry. They have no idea how far we've come and what it's taken to get here - they've only known a vibrant, energetic and healthy boy for the last year! Then again, that's a sentence I would have given all that I own to be able to write 4 short years ago, so maybe I am going to practice enjoying exactly where I am right now for a change. </div>
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Wishing all of my loved friends, family and fellow inflammation and food allergy-affected families the same this holiday season.</div>
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jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com6tag:blogger.com,1999:blog-2681304994711387294.post-27946471568457577002014-10-11T15:06:00.000-07:002015-05-13T13:05:11.011-07:00We've become Oreganders.I made that name up. Perfect to describe transplants from Michigan to Oregon. We've only been here 1 month and 6 days, but I could write a volume as thick as a phone book on what's been happening and what it's like here. Instead of boring everyone to tears and spending all that time on the computer, I will utilize the old adage about a picture being worth a thousand words and put up lots of pictures w/ brief captions instead.<br />
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I will definitely have an article coming soon about the level of food allergy awareness and support in the schools here, though - which is better than we ever dared hope for.<br />
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On 8/9/14, Jonah broke both bones in his left arm just above the wrist out in the park behind our house in Michigan, jumping out of a tree. At the same time, the future owners of our home were making their offer to buy our house. </div>
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Apparently not to be outdone, on 8/10/14 'Lou also broke his left arm, an unstable break through the inner bone about halfway up the arm. He did it in the same park we lived on, leaping from the steps of a play structure and landing awkwardly. </div>
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On 8/11/14, we were part of the disastrous sewage flood that overwhelmed Royal Oak and many neighboring cities. All of this while hubby had already relocated ahead of us for the previous 2 months to Oregon. In the pic above, that's the sidewalk you see underwater closest to the camera.</div>
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The sewage water reached 4' in our home. This was my freezer toppling and washing machine floating. </div>
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We had everything packed in the basement to move to Oregon and we lost over 110 boxes of belongings. What we did not lose, however, was the sale of our home or the health of our child with an open skin disorder. We had many friends and neighbors sickened by the bacteria and mold -and it took weeks for most people to get professional help with cleaning up the disaster. We were very fortunate. </div>
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We also had friends who started a fundraiser so we could arrive in Oregon with donated clothes, bedding, books and school supplies to help our children start school until we could get our feet back under us from the repairs needed on our newly-sold home. It was a wonderful and terrible way to leave our beloved home of 16 years - and one we still find it difficult to talk about today without becoming emotional. Some of the things we lost will resonate with us for the rest of our lives, like almost everyone we know who was part of this flood. </div>
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What a parting gift from the only home our children had ever known that every time they thought of the fear, loss and hardship we and everyone around us was experiencing, they also remember the help, kindness and working together to help each other, that happened. </div>
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'Lou had to make sure he used up his frequent flyer miles at our local hospital completely before we left the state and gashed the back of his head open during our last week there, requiring several staples. </div>
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Then Papi came home and we were reunited after the longest separation our family has ever been through - over 2 months! One last brief separation of a week while Papi drove ahead with the 3 bigs, 2 Great Danes and 3 ferrets to meet in Portland us as myself and the 2 littles disembarked from our plane on 9/5/14.<br />
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The fellas all had an amazing trip across the country to our new home - an adventure they will remember for the rest of their lives, complete with tales of Magnus getting stuck between the seats of the car while he slept, Jake flailing an arm (in his sleep) into the cactus plant he *had* to bring and escaped ferrets in hotel rooms as well as dogs opening doors and roaming hotels. Apparently having satisfied our disaster quota before the move, however, everyone arrived safely in Oregon in the end!</div>
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The littles and I stayed behind and said goodbye to our friends and neighbors from our empty house. Relying on the kindness of friends for the use of their car, 'Lou gave back the final souvenirs from the hospital he almost singlehandedly kept financially solvent over the last 6 years: his staples. Their grandpa stand-in completed the circle of my life in Michigan by giving us a ride to the airport to take the plane that moved us out of there. (Over 25 years ago, it was also he that picked me up from the airport when I came to Michigan to make it my home at 17 years old!)</div>
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We arrived in Oregon depleted and bereft and slowly began rebuilding. We had a minor setback initially with me being hospitalized for dehydration and exhaustion, but as soon as I was rehydrated, I went into nesting mode and we set about the business of turning a new house into our home. </div>
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Jovie had a field trip the first week of school that really helped show us the stunning beauty of our new home - just when we needed it to help balance the mess of a new home in need of more repairs than we expected, covered in the dust and grime of reflooring to remove all the carpet for 'Lou's skin disorder. </div>
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On the front bridge, by the front door. :-)</div>
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This room is half laundry room, half office. </div>
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There's a tiny kitchenette type room in the middle of the lower level of the house - like it was tailor made for the ferret cage and dog food vaults.</div>
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Drop the strawberries into his mouth from the 2nd story deck is 'lou's favorite new game. </div>
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(The tub is going - what a perfect spot for an oversized walk-in shower!)</div>
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Jovie's room is the last to get put together, as she needed a new bed - and just got it this weekend. The bottom converts into another bed for sleepover friends and brothers. </div>
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After taking all summer to sell our home in Michigan, it felt like we'd been surrounded by boxes forever and we thought we'd never be done with packing and unpacking, but putting our own touches on our new home and yards has really helped to heal the trauma of how we left our house in Michigan. The 2 bigs decided to switch it up and shares rooms w/ a little bro each instead of each other in this new house. It's really worked out well for big guys to help the little guys get up and get ready in the mornings!</div>
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Our new home comes with a stunning natural setting on a wooded lot set in the side of a small mountain or big hill. Unfortunately, the compost soil trails and garden beds are coming right into the house on my new floors w/ 5 kids and 2 Great Danes, so wonderfully fragrant Douglas Fir nuggets it is! Smells like Christmas! We can't believe how much less expensive things like mulch and gravel and tree trimming services are in this part of the country. Not to mention actual plants and fertilizers and quality soil - it's amazing. And you can plant all year! You don't have to spend hundreds every Spring only to throw it all in the trash come late Fall. I'm still giddy about it. The real bridge to the front door was probably the biggest selling feature for the kids. </div>
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Jonah and 'Lou had birthdays shortly after moving and here and got awesome new bikes with all the bells and whistles. We made a commitment before moving here that we'd try to adopt the Eugene way of life and ride bikes everywhere we could - and so far, we've been doing it! The littles and I ride up and down the mountain we live on every day to and from school - and starting and ending the school day on those kind of endorphins has made a wonderful difference in turning them from morning crabby heads into excited and eager little cyclists trying to better their achievement from the ride the day before. </div>
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See how the road goes up the hill into the trees? We live at the top of the hill. </div>
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We live on a cul-de-sac and there is almost no traffic. We live in an extremely wooded area and deer come in groups right through the yards to graze. </div>
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One of the first places we explored was Spencer Butte. Nothing like checking out your new city after hiking and climbing to the highest vantage point in the locale!</div>
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'Lou has jumped right into his usual routine here in Eugene and needed more stitches before he even got the cast off his broken arm. He's also got a new kind of rash all the time - road rash!</div>
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Bo is in heaven with the abundant supply of natural resources for his all-natural weapons. </div>
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This was another place we explored in our new state: the Pacific Ocean near Cape Perpetua, Oregon. </div>
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Even if we weren't sure moving here was a huge improvement for the rest of the family, the quality of the dogs' lives, at least, has improved dramatically. Everywhere you go, they're welcome. People are allowed to bring their dogs in to the hardware stores here. If you have a dog in the car, everywhere you go has a treat for them. In neighborhoods, you can see dogs wandering around the sidewalks and front yards, as calm and well-behaved as any person. They're on all the hiking trails, running beside bicycles, all over the school yards waiting for their kids to get out every day. </div>
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'Lou was invited to bring them right into his classroom for his Very Important Person day. </div>
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So far it's been such a whirlwind of moving here, getting them right into school because they were already a few days late and tying up the repairs and simultaneous sale of our old house along with trying to keep track of what was lost in the flood, who's injured now and how long until I go back to the Dr. to make sure it's healing right, what was lost or ruined in the move and what we need to do next, that I feel like I've been in a surreal fog for weeks and weeks. We haven't even had a chance to get homesick yet, although we miss our friends and neighbors. </div>
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Everything we hoped to gain for our family by moving here appears to have been very realistic, however - and it was more than the right move to the right place for us. I'll be posting soon about how the schools handle food and skin allergies here, it's a really refreshing change for the better!</div>
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jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com2tag:blogger.com,1999:blog-2681304994711387294.post-52225541709441678802014-07-04T23:14:00.000-07:002014-08-15T17:57:29.193-07:00Move into my Allergy-Friendly Life!<div class="separator" style="clear: both; text-align: center;">
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<span style="color: red;">Update: on 8/9/14, the family we have been dreaming of bought our house. we are so thrilled to have found people who see and will continue the love and care we have cultivated here. we can now let the home and neighborhood we have loved so well pass into hands we know will appreciate and take care of it just as much as we did. may you always live in happiness here!</span></div>
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After over 20 years, 1 college degree, sundry jobs, 6 cars, 3 boyfriends, 7 ferrets, 3 dogs, 4 cats, 1 husband and 5 children here, I am leaving Michigan.<br />
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We are relocating our family to the Pacific NorthWest in Eugene, Oregon.<br />
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We're listed on all the MLS and real estate sites,<br />
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<a href="http://www.1606ameliaave.utour.me/">http://www.1606ameliaave.utour.me</a><br />
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<a href="http://matrix.realcomponline.com/matrix/shared/J3BW34pcsXDd/1606AMELIAAvenue">http://matrix.realcomponline.com/matrix/shared/J3BW34pcsXDd/1606AMELIAAvenue</a><br />
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but none of them could possibly ever convey the best things about living here. Nor the reasons why my house is 'specially awesome for families dealing with food and other allergies and sensitivities. I decided to blog about these benefits here. Plus, I thought it would be awesome if potential buyers could read about what kind of neighborhood it actually is - something you can't get from calling a realtor and booking a showing.<br />
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I would tack on at least a couple hundred to the list price of a house I wanted to buy in Oregon if they'd provide this much info about their house as I search from across the country! Since my blog is published globally, just in case you are not able to come and tour my house in person and you are the one who wants to buy it, you'll surely appreciate all the details and pics I'm about to put up. If not and it serves no other purpose, it will be my long good bye to the house where I learned to be a homeowner, neighbor, wife, mother, lactation professional and advocate for children with food allergies, among many other metamorphoses.<br />
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Read on to get all the answers plus more info than you probably ever wanted about our home!<br />
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We have lived in this house in Royal Oak, Michigan for over 16 years now. It's a trendy little city chock full of bars and restaurants and all kinds of entertainment venues. Wonderful little shops and businesses. It's a young town, a fun town and a town with excellent school ratings. It just made the headlines as one of the best places in America to live for single moms and one of the top 10 places in the country to raise children.<br />
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Our house is an easy bike ride to downtown Royal Oak. Close enough that even our 6 year old can readily ride there and back, but far enough that we're not in the middle of the bar fights, drunk drivers, panhandlers, crowds, traffic, parking stress, or rat infestation that started there with all the restaurants.<br />
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Here in the North part of town, we can ignore massive crowded events like Arts, Beats and Eats and Dream Cruise if we want to. Lots of people looking for homes in Royal Oak specifically want to live close to downtown, but as a wife of a police officer here for 23 years, take it from me: if you have kids, you want a little distance between your family and downtown.<br />
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If you buy this house, you will be living on one of the safest streets in the city. It's in the section of the city with the least reported crimes and police calls. Not only that, but 3 police officers in one form or another (retired, auxiliary, etc...) live right on this block. We also have a smattering of school teachers, a couple of lawyers, some technical professionals, a lot of hospital employees and a few auto workers as well as a couple of small business owners with companies related to home repair and renovation.<br />
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Royal Oak has a booming real estate market right now, with too much demand and too little supply of family homes. As we start out on this journey of selling our home, it has become obvious to me that there is really no way to impart the value to our real estate agents of the allergy-friendly life we've set up here, so I decided to put it on my blog.<br />
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We bought this house in 1998. It was a 990 sq foot, 3 bedroom ranch, no garage - with the ugliest bushes you ever saw. But it backs up to a park, with a gate leading straight out there from our yard - and we thought we might have kids someday. There was no garage -and we didn't want one obstructing the view into the park. Back then, many houses on this street did not have garages for the same reason.<br />
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Like all Royal Oak homes, the bedrooms were tiny, the closets almost nonexistent and the natural light minimal. </div>
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By the time were were pregnant with our 4th, we knew we had outgrown our home. We could either add an addition on or move into another house. We love the neighborhood. Everyone here looks out for each other. Neighbors here call you when your dog gets out and trots past their house. They bring in your trash cans when they get blown down the street. They water your lawn and take care of your animals and plants and mail when you go out of town. We all take turns mowing the lawns of the elderly on the block. We bring them meals when they aren't feeling well and shovel their snow and check up on them. So we decided to add on. </div>
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We widened the doorway to open the dining and kitchen areas to the living room downstairs. We turned the front bedroom into a mudroom with a perfect large cubby under the stairs for storage or pets. Almost half the room became an enormous coat closet, as rare as hens' teeth in Royal Oak! It's hard to capture in pictures, but this closet is twice as large as most Royal Oak full bathrooms.<br />
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We turned the former master bedroom downstairs into a girl's room. This is bedroom #2.</div>
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Bedroom #3 we had custom painted by a local artist with a theme from their favorite book, 'Where the Wild Things Are', when our 1st two were toddlers. If you're local and you've ever seen the 2nd street sub shop with Marilyn Monroe and Groucho Marks, that's the same artist. Or if you've seen some of the county buildings with Civil War scenes painted on them, those are probably Matthew Music pieces, too. He works completely freehand and it took him about 11 weekends to do this room. </div>
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The entire house is all wood floors with the exception of an office in the basement. We replaced the picture window with a bay before we did the addition and put in all new double pane, vinyl windows as well. A friend helped me do a special paint technique in the living room that is a combination of ragging and dry brushing with 3 colors: curry, pomegranate and root beer. Yes, I was pregnant when I picked the colors - how did you guess?</div>
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We like to put a small Christmas tree in the bay window every holiday, to save floor space and have it front and center in the window.</div>
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In the hall, a friend and I did a technique with the plaster where we pushed real leaves from outside into the walls, removed them and then rubbed a mix of 'melting chocolate' (yes, pregnant again! Are you beginning to see a pattern? ) and glaze into the leaf impressions. I constantly get raves about this hall and wish I'd done it in a bigger room now, as well.</div>
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Then comes the downstairs bathroom. I guess by now you've figured out that I don't like boring houses with white walls everywhere. Or carpet with all of my allergy kids. A couple of people have suggested that in order to sell the house, I might need to tone it down or repaint over my vivacious colors. Realtors have echoed this over the phone - but once they come in, they change their minds and tell me the colors are very warm and tasteful. Repainting is not an option with my skin-disorder and severe allergy guy - but even if i could, I wouldn't want to. In person, the colors are lively and warm. They replenish and energize me through the dark winters here. </div>
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Besides the paint fumes, we have to keep chemicals, fragrances and off gassing to an absolute minimum for our open skin disorder child. This means I very seldom use traditional/ commercial cleaning products. For the tubs and sinks, I use Mrs. Meyers cleaning solution in sage, verbena lemon or geranium, very diluted. I use Dr. Bronner's in peppermint, lavender or eucalyptus on the kitchen tile floors. Sometime I switch it out for soap nuts liquid soap. (Not nuts or even related to nuts - they are actually berries). For our wood and glass, we use white vinegar. Commercial detergents have never seen the inside of our washer or dryer - nor has fabric softener of any kind. We use soap nuts exclusively on our laundry. </div>
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When he shows signs of harboring a skin infection, we will have to give a (very diluted) bleach bath, and then use it to disinfect the bathroom, to prevent him from re-spreading the bacteria around his environment. I don't use it on a regular basis for house cleaning. We use only natural hand soaps, nothing antibacterial/antimicrobial - and if we buy anything synthetic new, we open it and let if off gas until the smell is gone before being able to use it. We do this outside in the shed when weather and product permit, otherwise we leave it in the basement, in the office down there. </div>
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We wash our dogs with Dr. Bronner's soaps and can only use aloe and olive oil on our little guy. No hairsprays, perfumes, colognes, scented candles or air fresheners can be used while our youngest is in the house. During showings as we sell the house, we have signs up requesting that no food be brought in and we do light a candle near the dog's bed per realtor request, letting our sensitive guy play outside until the smell has cleared. So, if you are fragrance sensitive and want to book a showing, call ahead and ask that I not light the candle for your showing!</div>
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The best compliment I ever got on my house was something a stranger said when a friend brought him in to introduce to me:</div>
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"Wow!", he exclaimed, "Being in your house feels like getting a big hug." </div>
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Knowing it's a non-toxic, allergy-friendly big hug makes it even squeezier.</div>
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The colors are so rich here that I also swear it's why I had such easy babies. Babies are always fascinated and engaged with their surroundings here because they are so vivid. </div>
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For the downstairs bathroom, I used Venetian Plaster. I then stenciled over it and sealed the stenciled areas. </div>
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Next comes the kitchen. Hold on to your wigs, because it's a doozy. Apparently the kind of kitchen that puts real estate agents at risk of spontaneous combustion. Yes, I have been told one trillion gazillion and seventy hundred times that it will never sell with my collage of pictures on the wall. Yes, I've finally taken it down. I will add pictures of it without the collage.</div>
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We just remodeled it in the fall of 2013. We tore it back to the studs and replaced everything. This kitchen has never had a trace of peanuts in it. Nor a trace of dairy; not even a hint. There is one large pantry for all things gluten-afflicted, and the rest of the kitchen is gluten free and usually top 8 allergen free, as well. Egg is treated as a very controlled experiment in this house and literally taken straight outside or eaten standing right over the sink if it's too cold outside. </div>
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The appliances are all top of the line stainless steel. We tossed the flat top electric stove and ran a gas line for a good gas range. The dishwasher is the biggest they make currently: 16 place settings. They all come with a transferable extended 5 yr warranty. </div>
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The microwave ("Don't put metal in the science oven!") I didn't even want but my husband says the resale value of our entire home could hinge on having, is huge and fantastic. It has a pop-out section that hovers over the stove and sucks up steam and smoke right up to turbo speed. Sometimes even fast enough to keep it from getting to the smoke detectors. Don't ask me how I know how long it takes for smoke to get from the stove to the smoke detectors. Which, by the way, were all upgraded to be hardwired into the house when we put the addition on. </div>
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The fridge makes ice (does it tell you how outdated our old kitchen was that my kids still think this is some kind of sorcery?) and has french doors instead of that lower back-torturing big drawer for the bottom half. Best of all, there's never been dairy or peanuts in it!</div>
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The sink is a humongous drop-in farmhouse apron front sink that is perfect for someone not overly burdened with height. I like it so much, I want the exact same sink in my new house in Oregon. You could grind up a large pair of shoes in the garbage disposal. The cabinets are custom and solid cherry. There's a lazy susan in a corner unit that is solid wood and very sturdy; not the usual flimsy plastic ones I see in all the kitchens I've been looking at. </div>
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The countertops are beech butcher block and I maintain them lovingly. I oil them every 3 weeks with food grade mineral oil. I love cooking and feeling how they actually warm up with the kitchen, instead of always being cold like granite. We got enough cold outside with this polar vortex winter we just had -I am so glad I did not invite anything cold into my home!</div>
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The tiles are slate-inspired ceramic in natural colors. The floor before was mostly white - and with 5 kids and 2 great danes, I loathed it. Ditto the white cupboards. In searching for a new home in Oregon, if I see a white kitchen, I can't run fast enough. </div>
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We also put in a back door (above)where there used to only be a window (below):</div>
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The wainscoting/ chair rail is the very last completely original decor left on the house. One of the nephews of the couple who originally built and lived in this house came to visit from out of state a couple of years ago. He was elderly and said it would most likely be his last trip and he so wanted to see the house that held his best childhood memories again. We gladly gave him a tour and he wept when he saw the wainscoting was still here. I haven't been able to get rid of it ever since. We just use murphy's oil soap on it, sand and restain it and reseal it every 7 years or so. </div>
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A room that no longer strikes fear and loathing into the hearts of real estate agents.</div>
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Super deep pantry with solid, sturdy wood shelves. </div>
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Solid wood lazy susan - 99% of the lazy susans I see in houses today are the flimsy plastic Ikea kind. I am really going to miss this one that easily held all my heavy glass tuppweware. </div>
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Oversized cabinet for countertop appliances with tiny shelf on top for spices - they stay fresher in the dark, you know!</div>
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As a family dealing with life-threatening and severe multiple food allergies, being cautious becomes a way of life. Never varying from safety measures is what keeps food allergy kids safe. We've all become almost trained to be ultra careful in the kitchen. You wear proper protective and hygienic clothing, you treat the equipment here with respect and you never take chances.</div>
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I hope all of our precautions can benefit another family who needs an allergy aware home!</div>
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The kitchen should be a safe place for everybody, my food allergy kids would be the 1st</div>
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to tell you this.</div>
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Use whatever protection or precautions necessary to prevent cross-contamination: that's what we do!</div>
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Next we go down to the basement. It's only moderately "It rubs the lotion on its body or it gets the hose", as we partially finished it.<br />
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It's cram packed full of boxes right now. We also had to pull up the carpeting we had installed before our son was diagnosed with an open skin disorder.</div>
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In looking at new houses in Oregon, I always like to ask, "What project would you want to do next if you weren't moving out?" to see what kind of needs I might be inheriting. If someone asked me that question, I would say we would like to put a bathroom in the basement laundry room and finish all of it except the work room/storage area.</div>
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The basement is ginormous and provides for so much storage that we have never missed a garage. But we would like to put some bamboo or cork flooring down there and finish the walls and ceilings eventually, if we were staying. We have vents installed down there for temperature control and my kids play down there all the time, so aside from the ugly flooring and open ceiling in the laundry room, it's a perfectly great basement. No scary sump pump things, no flooding unless your kids are learning how to do their own laundry and let a sock clog the drain of the sink next to the washing machine or you don't keep up on the seal around the footing of the house in spring, when the snow is melting. </div>
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This Superman is cardboard - the 3 story laundry chute now empties out where his legs are. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjttSoE28yCb5q5h8EiAoZBo2HKQNd1UP8DY75K7h8KoVqY5uKrsQGyOzu44GLp57v-p6IpKnpLQY0nPhug_swKrvTXItSwRHWxtvyZunSjwFKx4h1vFj0oqMuHcVxUBwphK4BuTPsW7WJ-/s1600/DSCF2003+6.33.07+PM.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjttSoE28yCb5q5h8EiAoZBo2HKQNd1UP8DY75K7h8KoVqY5uKrsQGyOzu44GLp57v-p6IpKnpLQY0nPhug_swKrvTXItSwRHWxtvyZunSjwFKx4h1vFj0oqMuHcVxUBwphK4BuTPsW7WJ-/s1600/DSCF2003+6.33.07+PM.JPG" height="240" width="320" /></a></div>
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Another custom painting by local artist Matthew Music.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWdcb0fWQwAtEivsHZA9thkKPWgBtccACKeheb6_Fc69uAWkmadGTaOvSC6zoI_mkHd8mc8JKaBASsV8Hn_7FqCvEMCf8j0YAZeVjepPdLZZJ46-A21NOhH7TnRTLW4pwUsIU2qY3kR7ty/s1600/DSCF4485.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWdcb0fWQwAtEivsHZA9thkKPWgBtccACKeheb6_Fc69uAWkmadGTaOvSC6zoI_mkHd8mc8JKaBASsV8Hn_7FqCvEMCf8j0YAZeVjepPdLZZJ46-A21NOhH7TnRTLW4pwUsIU2qY3kR7ty/s1600/DSCF4485.JPG" height="240" width="320" /></a></div>
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The superman is yet another custom painting by local artist Matthew Music. (The Hulk is cardboard).</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaojpv9PD7-jN4VAfAlXBue3nkGO7IyRMUS3KvoW_U7O7Vs_LjHLameb9NuGDLYwj5ZGjGxxKshNn-kjbK875Kjdkwf7zTt6BS5AAyV3ZNsfVbFTKqt25wqaG_GivcQGualWCT2gBWQsVY/s1600/plyrmcathat..JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaojpv9PD7-jN4VAfAlXBue3nkGO7IyRMUS3KvoW_U7O7Vs_LjHLameb9NuGDLYwj5ZGjGxxKshNn-kjbK875Kjdkwf7zTt6BS5AAyV3ZNsfVbFTKqt25wqaG_GivcQGualWCT2gBWQsVY/s1600/plyrmcathat..JPG" height="240" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBVipXn5y7Ympo0mLkA-uhyphenhyphenXROJJXUqoLCLqg6mHnmesjqksE-NuqUeWLGP5_83mkHtNkvZ5ZXvlqmu5ifIm_jRLP_h556qMSee2iYKWG6joCoGNWar5yH0Zi3Y1ZoDV57CfPAklGOgEqy/s1600/plyrmcbyoutlet..JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBVipXn5y7Ympo0mLkA-uhyphenhyphenXROJJXUqoLCLqg6mHnmesjqksE-NuqUeWLGP5_83mkHtNkvZ5ZXvlqmu5ifIm_jRLP_h556qMSee2iYKWG6joCoGNWar5yH0Zi3Y1ZoDV57CfPAklGOgEqy/s1600/plyrmcbyoutlet..JPG" height="240" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHElm-bJEd1xENGy9Op7laCBz_vaxRnfOvEud5V2Sque7vKWqgGsUxJQREDTSoaU3wDlFjVrUd-sKLONHzeaYJzZ6W9BG2r5PIULVCA4TmVfeVtpp9Fi7QwbE_ottQ5zhsPwAR5fjyKZNo/s1600/plyrmcubby..JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHElm-bJEd1xENGy9Op7laCBz_vaxRnfOvEud5V2Sque7vKWqgGsUxJQREDTSoaU3wDlFjVrUd-sKLONHzeaYJzZ6W9BG2r5PIULVCA4TmVfeVtpp9Fi7QwbE_ottQ5zhsPwAR5fjyKZNo/s1600/plyrmcubby..JPG" height="240" width="320" /></a></div>
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These cubby units are anchored to the walls for tipping safety and will remain with the house when we sell it. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiVssPa1zuAHwuG0rSlFWlfb7-gTfzMxX0uU7VJbKjLnVmcRpQ7suZj2FA82aT_kDCtYAl6smDwvswp4WhafK4xPUHndDx1pZAWl1AEn6Hh58FOcQlt5eE7cP79Bb7u4hgInGQuCWJljat/s1600/plyrmsprmn2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiVssPa1zuAHwuG0rSlFWlfb7-gTfzMxX0uU7VJbKjLnVmcRpQ7suZj2FA82aT_kDCtYAl6smDwvswp4WhafK4xPUHndDx1pZAWl1AEn6Hh58FOcQlt5eE7cP79Bb7u4hgInGQuCWJljat/s1600/plyrmsprmn2.JPG" height="300" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh57u8NgKpRTmmOb-sGuNKf7NQa8Z3Yi8xJzMMu4zjsvUiiNwXiu0tq7WKxnqiBoDifO90oi9aF3F2FW2YVtAJO90bBtehxu28Bl0b7gEXh-lW4AGaSq9C_cXH18Q5xig2bIH7HNXbZW7Wb/s1600/plyrmstairs..JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh57u8NgKpRTmmOb-sGuNKf7NQa8Z3Yi8xJzMMu4zjsvUiiNwXiu0tq7WKxnqiBoDifO90oi9aF3F2FW2YVtAJO90bBtehxu28Bl0b7gEXh-lW4AGaSq9C_cXH18Q5xig2bIH7HNXbZW7Wb/s1600/plyrmstairs..JPG" height="240" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz2D8hLeACmQdjRoSNY1b8FONKen3xk4PjRaTlp-ktiPSCy_8Bcs2FtBJd7wiV5qfrwWfhdbL5mMYgDpjKfJNse3AOpyeXllQJ2CONK_M72_p3jv1gSYcQufMREPh85PuPejgPy4Kqurck/s1600/DSCF4484.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz2D8hLeACmQdjRoSNY1b8FONKen3xk4PjRaTlp-ktiPSCy_8Bcs2FtBJd7wiV5qfrwWfhdbL5mMYgDpjKfJNse3AOpyeXllQJ2CONK_M72_p3jv1gSYcQufMREPh85PuPejgPy4Kqurck/s1600/DSCF4484.JPG" height="300" width="400" /></a></div>
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Here's what the basement is like currently:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr0Jzj-P5L_3tcgX-kI6FTViKP7gNy_P7eCOpLPvdNrQqrPifptvLNIAkM-RCPQ60MDjWfGiURdtRqA8mUg8vtijVInDa3Bwp9cGhIHgAdWcVW1j3FtJ3SwubjcREMIPdEUE4qEiP6AX9l/s1600/IMG_6568.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr0Jzj-P5L_3tcgX-kI6FTViKP7gNy_P7eCOpLPvdNrQqrPifptvLNIAkM-RCPQ60MDjWfGiURdtRqA8mUg8vtijVInDa3Bwp9cGhIHgAdWcVW1j3FtJ3SwubjcREMIPdEUE4qEiP6AX9l/s1600/IMG_6568.JPG" height="240" width="320" /></a></div>
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Here's an idea of it before the boxes...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXbWnuFfAUhH00Qi89aBFhH4H9m6KsOXZXZPBn-RgDtNzb16BA12pwi_yePzpvx78MS_K2ZvELyylv3dBMUJg1w6MIZXhai77tTkepNrJ8DaLzq6OStKpcwPV6UPtmluePV6wkAooDVmXo/s1600/IMG_1114.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXbWnuFfAUhH00Qi89aBFhH4H9m6KsOXZXZPBn-RgDtNzb16BA12pwi_yePzpvx78MS_K2ZvELyylv3dBMUJg1w6MIZXhai77tTkepNrJ8DaLzq6OStKpcwPV6UPtmluePV6wkAooDVmXo/s1600/IMG_1114.JPG" height="240" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt1yHvVe6LY75iSA8dz3psdgfkxNXIEQjrG1-2c0LguRe56al9SrEkSoUsJ8tNu06ItZuLwRUBtc-WVd-smTMPLHuIAzhjYAf1gVeHt2UO6kstDeSfKKbw_Zp6bZoq718XZ4MTS0Xt_EPh/s1600/IMG_6819.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt1yHvVe6LY75iSA8dz3psdgfkxNXIEQjrG1-2c0LguRe56al9SrEkSoUsJ8tNu06ItZuLwRUBtc-WVd-smTMPLHuIAzhjYAf1gVeHt2UO6kstDeSfKKbw_Zp6bZoq718XZ4MTS0Xt_EPh/s1600/IMG_6819.jpg" height="320" width="240" /></a></div>
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This is the storage area. The shelves in the back are super deep, like 8'.</div>
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The room is a lot wider than this picture captures.</div>
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We use a commercial grade dehumidifier down here as our allergy kids can't be around mold or mildew - plus we hang our clothes on a line in the laundry room to dry. You can tell by the smell down here that we have a completely dry basement, no issues with dampness or mildew at all. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUVhbFSI6smaJPRDQ8R4hNCYysu6i8ttDagHTuUDZFFaGD8ISDHlxuIwQ5LHg5mZ9Tb1sZAWrrUNTk7Iq1r58p1X_2olBfnpmKZIVQ7P-oHIZNcq0wBkOrAMPWs-KXXzlrbjLqai7Uhc8b/s1600/IMG_6820.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUVhbFSI6smaJPRDQ8R4hNCYysu6i8ttDagHTuUDZFFaGD8ISDHlxuIwQ5LHg5mZ9Tb1sZAWrrUNTk7Iq1r58p1X_2olBfnpmKZIVQ7P-oHIZNcq0wBkOrAMPWs-KXXzlrbjLqai7Uhc8b/s1600/IMG_6820.jpg" height="240" width="320" /></a></div>
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Here are the furnace and water heater. Water heater is a top rating of 90 for efficiency and is a huge 75 gallons. More than enough for dishwasher to be running w/ washing machine and a shower to be going while someone fills the giant garden tub. This furnace is a 90 for efficiency and the one in the attic for the newer addition is an 80. Both water heater and furnace down here have been replaced in the last few years and are newer. We use the HEPA ultra allergen filters on the humidifier portion of the furnaces and replace them every 3 months. The one in the attic was installed with the addition in 2005, so 8.5 years old at the time of this writing.</div>
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The central heating and cooling for the newer addition is completely separate and we have found the ability to keep the different levels of the house at drastically different temperatures to be a huge benefit with a child with skin allergy and fragrance sensitivity issues. Air conditioning dries these kids out and contributes to eczema and hyper reactiveness. Turning off the cooling system upstairs as often and as long as needed so he can sleep with more normal humidity helps him tremendously. If a guest arrives with lots of perfume or fabric softener on, we can keep the air on in one half of the house where the guest is, and let him go hang out in the other half, where we open all the windows. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaQQnDVMKysEYAryCjgaCr-D_F66KofCfap3KcsnGZlYP4fryryf9B0u-rms-QY4ldQ3kEc3JU06uPfcKq3kI3ySCvChcPMn6RSB_L7Ox6QoZN-GOuKLStjzMrwhcNPn81tnA-SggAoZ09/s1600/IMG_6733.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaQQnDVMKysEYAryCjgaCr-D_F66KofCfap3KcsnGZlYP4fryryf9B0u-rms-QY4ldQ3kEc3JU06uPfcKq3kI3ySCvChcPMn6RSB_L7Ox6QoZN-GOuKLStjzMrwhcNPn81tnA-SggAoZ09/s1600/IMG_6733.JPG" height="266" width="400" /></a></div>
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This is the finished room in the basement. We use it as an office/man cave for my husband, but if an exit was added that complies w/ code, it could easily be another bedroom. It's the only area with any carpet in the entire house, as our youngest son never goes in here. </div>
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Next we go back upstairs and up again to the 2nd story. We added this addition on in 2005, so as of this writing, everything in this part of the house is only 8 1/2 years old. If it was a child, it would still be throwing tantrums. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix13qGFqZEVqOy3GQZy_2KzEAtxaRWCn8L8p_vpXxAoIFHkf1jdaYcRX2IbfDZNbZIB232stI3ljGRvPUyQnobS6gNWZG4KRwOq8iznPSWrZraD4fNYxf-tLSCFxpOWMXuG6dQocmHcjE0/s1600/DSCF0715.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix13qGFqZEVqOy3GQZy_2KzEAtxaRWCn8L8p_vpXxAoIFHkf1jdaYcRX2IbfDZNbZIB232stI3ljGRvPUyQnobS6gNWZG4KRwOq8iznPSWrZraD4fNYxf-tLSCFxpOWMXuG6dQocmHcjE0/s1600/DSCF0715.JPG" height="300" width="400" /></a></div>
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The stair landing is approximately one Great Dane large. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_Si-P1tIZcq29WqMVFIIn6sKbertp3X_g4-JwRbcImI9_V4pkAR9dk2DL0jFCZkv6oCx9XR1RYRdV07JLiOQK3XBx7Aii1Pwtu8x-7nevccI61w3wIy3eVeG_HgcXLdMGl9gnVCy566hq/s1600/Stairs.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_Si-P1tIZcq29WqMVFIIn6sKbertp3X_g4-JwRbcImI9_V4pkAR9dk2DL0jFCZkv6oCx9XR1RYRdV07JLiOQK3XBx7Aii1Pwtu8x-7nevccI61w3wIy3eVeG_HgcXLdMGl9gnVCy566hq/s1600/Stairs.jpg" height="400" width="225" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgVdUXCkAN0R2GNli90c93JbdQrPO6bwx1uFuwkIcbG5o1vlV60Vv0o0Vrr-cHqpSbaKuH14uSb81yh0nmpQHBqQ5K1t6HhfWrgT6_UZDUp2BtSNFJEgZLlGtbHPAPQMpp7rwFAHo7nGP9/s1600/IMG_6682.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgVdUXCkAN0R2GNli90c93JbdQrPO6bwx1uFuwkIcbG5o1vlV60Vv0o0Vrr-cHqpSbaKuH14uSb81yh0nmpQHBqQ5K1t6HhfWrgT6_UZDUp2BtSNFJEgZLlGtbHPAPQMpp7rwFAHo7nGP9/s1600/IMG_6682.jpg" height="320" width="240" /></a></div>
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While I'm on the stairs, I should add that we have baby gates installed at the top of each stairway as well as the bottom of the main one - and in most bedroom doorways. The hinges are permanent, but the gates are easily removable. The one at the bottom of the stairs can be swung back and forth 180 degrees to either secure the bottom of the stairway or close off the mudroom opening to the living room: perfect for keeping muddy or wet dogs isolated until they dry.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqn0sWUdZLkApvtwfEZ0pLGpp54hC3STqmx-Ug6wcqf8NMAZT5an8KtVZWU-ygUz3B41317pY-7akttvNs6C8zOmYK10tTeFHeBX58OZAa7rHdFm6SrkYthq7PZpwH9evP9Tgwf4X7tMFx/s1600/IMG_0708.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqn0sWUdZLkApvtwfEZ0pLGpp54hC3STqmx-Ug6wcqf8NMAZT5an8KtVZWU-ygUz3B41317pY-7akttvNs6C8zOmYK10tTeFHeBX58OZAa7rHdFm6SrkYthq7PZpwH9evP9Tgwf4X7tMFx/s1600/IMG_0708.JPG" height="320" width="240" /></a></div>
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Even more perfect for halting incoming hordes of children during Halloween or birthday parties to request that they go wash allergen-y hands before coming into the house. We can leave these gates with the home if requested; otherwise, we are happy to take them with us.</div>
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Even more perfect for halting incoming hordes of children during Halloween or birthday parties to request that they go wash allergen-y hands before coming into the house.</div>
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The gate going down to the basement has a customized cat or small-dog sized doorway cut into it. Before any of our children were allergic to cats, we customized an area of the laundry room for their litter boxes with a framed cutout in the gate as well as the wall b/t the stairway and the laundry room. We added shelves that were staggered like a staircase going down the laundry room wall and placed their boxes beneath this area. No cats have been in the home since 2007. No smokers have ever lived here, either. (We have met all of the previous owners, since the home was originally built).</div>
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Bedroom #4 is the first room you come to at the top of the stairs. </div>
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This room has a vaulted ceiling and a roomy window seat with storage. The bedroom window faces south for lots of sun and cross breezes from the park behind the house flowing into the room. You can see through the entire park and across several blocks from this window. We continued the wood floors into the window box and closets. </div>
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2 kids can share this room easily. Double closets would be perfect for winter/summer separation of clothes for a single inhabitant in this room, as well. </div>
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After coming up the stairs and facing the doorway to this room, the expansive family room opens up to your right. </div>
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The stained glass piece in the octagonal window is easily removed, leaving a normal glass fixed window. We are happy to leave the stained glass piece if requested; we are equally happy to take it with us if not. </div>
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This is probably our favorite family spot in the house. It's perfect for TV watching and family snuggles. The living room downstairs won't fit us plus 5 kids and our 2 giant Great Danes for those long LOTR marathons. </div>
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It's been pointed out to us by more than one realtor that we priced ourselves out of our neighborhood when we built this addition. I don't know why people say this like it's a bad thing. We love being the biggest house on the block. When we are up here in this room, we are literally above it all. The noise of traffic and lawnmowers and car headlights shining in through your windows. No prying eyes for when you're nursing a new baby and all your shirts are covered in spit up and it's easier to just go without. Have at it up here! Nobody is going to see your lush milky mams except for a couple of robins - and maybe a lucky cable guy up on a pole.</div>
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We can look out any of these windows and see for blocks and blocks. When the weather is cool and we open all the oversized windows and the breeze is swishing and undulating through the room, all we can hear is the rustle of the treetops and the city melts away and it feels just like being in a treehouse. When the neighbors spray chemicals on their lawns, when they have a gathering and someone lights up a cigarette, when they're doing laundry and the scented fabric softener exhaust makes you feel like you drank grape perfume, when the solicitors and proselytizers are making their rounds and can see you ducking and slinking on the main level of your house...up we go, above it all to another plane where the air is clear and clean. </div>
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In the mornings when the sun comes up, there is no structure around to block your sunrise. The morning light streams in and sets the place aglow, completely unfettered. Same thing at sundown. I love it when neighbors come up here for the 1st time and express amazement to see their own home and neighborhood from the vantage point that being the biggest house on the block can provide. You can see your kids playing outside almost anywhere in the neighborhood, without ever leaving your family room. </div>
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There is also an office up here. French doors lead you in to where the magic you are reading right now happens. Vaulted ceilings and huge windows continue in here and make this corner of the house feel very spacious.</div>
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No closet means this is a bonus room. My favorite thing about this room is the light. It gets both southern and western exposures and all of my most temperamental plants absolutely thrive in this room. Extra deep windowsills in every room upstairs just beg you to grow plants indoors. </div>
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Children are another story. Be careful about leaving them in the extra deep window sills. Apparently they wilt. </div>
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The other room upstairs is the master. It takes up almost half the width of the front of the house and is large enough for our whole family to sleep in, if needed. Not that we have that problem with our well-adjusted and independent little darlings. They know mommy and daddy's room is for mommy and daddy and that children should sleep alone in their own beds, in their own rooms. </div>
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We have a 3 story laundry chute straight to the door outside the laundry room in the basement that is a lifesaver. As long as you don't let the kids try to drop their stuffed animals down it on top of a pillow, for a fun ride. Then it gets jammed up. But don't worry if it does happen - we'll leave you the special pole with the hook duct taped to the end that we designed for just such misadventures!</div>
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We also built in a digital wall safe that stays with the house. This room features oversized windows like the rest of the 2nd floor, but also a walk-out bay window that is spectacularly ginormous. You feel like you are standing on the bow of a ship into the middle of a front yard when you stand in the window and look up and down the street. There's a big skylight, too. This room catches light even on the greyest of days and we find ourselves coming up here a lot in the winter to do big projects on the floor like puzzles and lego kits. I had the idea to put a beautiful stained glass hanging lamp right in the center of the bay, and seeing it lighting up this room from outside when we come home at night warms my heart. It's a unique touch that I haven't seen anywhere else around here!</div>
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The kids across the street say when the curtains in the bay window are backlit at night, it looks like a castle bower or something.</div>
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The master bath is at the back of the house. We wanted the largest tub we could find for all the kids to get in at once. We also needed to build a roomy shower to wash our giant Great Danes in. This is a bathroom you can line the kids up in and do haircuts and then send the pets up to get washed with them after their buzzes and clips!</div>
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Side by side or stacked 2 deep, you can get 4 biguns in the deep part and a little one on the seat. If you have a littlun that's too small to take a bath so big, that's okay - he can use it as a mini shower until he gets big enough for the tub!</div>
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And here's a bonus: this is one place in the house I actually did not give birth at! (Seriously, we rented an Aqua Doula, don't worry). Another bonus: no oils, bubbles, fragrances or other luxury/fun type products used in this tub. Not even shampoos, conditioners or soaps. Our kids have to wash in the shower with cleansing products before they can get in the tub. The jets have also never been used during a bath, but only run about once a month to clear them out and keep them working. Part of our littlest guy's skin disorder requires frequent soaks in plain warm water free of any chemicals, fragrances, etc...</div>
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If you have littluns, a bathroom like this can make potty-training a dream. We finally installed the permanent baby potty rings so you're not always having to replace and remove them for little ones learning to use the toilet. Not that it was ever a problem with our little bundles of joy. </div>
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But really though - for some reason, other kids in the family are willing to lounge around and hang out in this spacious and light-filled bathroom while a sib is taking care of some pottying - It's one of those parenting mysteries I've never figured out. Sort of like some mysterious group rite of passage or </div>
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sibling bonding thing, "You need never face the scary flush alone, bro - we got you." </div>
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I often ponder this childish phenomenon. In another room. Without someone on a toilet.</div>
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Right off the master bath is the master closet, one of the rooms in this house that is nearest and dearest to my heart!</div>
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A picture is worth a thousand words, so I'll let the pictures do the talking:</div>
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This was our rusty old tin shed before:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjortNNv4bCAUmYIEItpit50xuK0Ew7KjhkH7qhehgIGyC_YZ5pk9lN5SWe29vNDbhtKG2lcO3s_4sYPyPMs7qf3Ce0OLYu1xcwAUx1L_xzqkKjLKJOytXTpKqUhxS1dpqSj4KR59VvrVo5/s1600/lawnguys.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjortNNv4bCAUmYIEItpit50xuK0Ew7KjhkH7qhehgIGyC_YZ5pk9lN5SWe29vNDbhtKG2lcO3s_4sYPyPMs7qf3Ce0OLYu1xcwAUx1L_xzqkKjLKJOytXTpKqUhxS1dpqSj4KR59VvrVo5/s1600/lawnguys.JPG" height="300" width="400" /></a></div>
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Behold the Taj Ma-Shed that stands before you today:</div>
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We use the bottom for storage and the top is a playhouse. It's wired for electricity and has a lightbulb, flip switch and outlets so when your kids have the neighbor kids over for sleepovers in the playhouse, nobody has to be scared of the dark! Or when your middle schooler brings home a bad report card, you can threaten him with being banished to live out his teens there. </div>
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I may have mentioned that we live on a park and it's great, but the one thing it lacks is a decent sandbox. As a mom of 5 kids that are 7 years apart, I can tell you the things that they can all do together that keeps all 5 happy and squabble free for hours on end are few and far between, but a sandbox is definitely one of them! (The others are sleeping, swimming, legos and Minecraft). </div>
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We made the one that your kids could end up playing in for hours while you sit inside and eat bonbons and scour the celebrity gossip magazines like everyone thinks a mom does all day! We made it extra large - almost schoolhouse sized- and filled it with plenty of clean, good quality play sand. We built a custom, A-line cover to keep out animals, leaves and snow - and to provide shade on hot days. </div>
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This is a 12 year old boy who spent most of the day in the sandbox, designing a city for his little bros and sister's action figures and cars. A 12 year old who didn't have time to get on any electronic devices or turn on the TV because this is what he was doing instead. </div>
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If you buy this house, you are buying a house where the parents act like parents and set limits on children sitting inside all day while their brains turn to mush. We make them get outside instead! - Continue this house rule and the children will thank you for it!</div>
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Aside from the kid friendly features, it's a great backyard, but if you really want a garage, you won't mind building one and taking space from your yard because you live right on a park! We've had one mapped out and priced in order to give prospective buyers an estimate. You wouldn't have to lose the playhouse or the sandbox and a 2 car garage would cost under $15,000 to build and take about 4/5 weeks to complete. </div>
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We love growing things and try to plant minimal pollen-producing plant and trees around the house for our seasonal allergy family members. </div>
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This is the front gate to the dog run, which runs along the left side of the house as you view it from the street. It ends beside the back steps in the back yard with another gate. If you bought my house and didn't need a dog run, it would make a great little gated garden area. With free Great Dane fertilized ground!</div>
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This is the back gate of the dog run, between the shed abad the back of the house. </div>
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I planted morning glory beside the gate, in the hopes that it would grow and drape all over the fence to give privacy to the dog run. In case your dogs are shy about their bathroom business. </div>
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Tulips come up annually under the redbud tree at the left corner of the house. </div>
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Around the middle of the dog run, I planted orange trumpet vine. I keep it cut into the shape of an umbrella tree. this should provide some really nice coverage on the fence in another year or two.</div>
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We planted a redbud tree at the left corner of the house - the bright pinkish-lavender blossoms against the dark bark of the tree every Spring are breathtaking - this is one of my favorite trees. The blossoms turn into leaves, so there's no yard cleanup in the Spring with this tree. </div>
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Redbud and tulips in early spring!</div>
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Redbud in full bloom!</div>
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The tall posts are perfect for a Halloween spiderweb. </div>
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After several years of thriving flowerbeds in the front of the beds,, I have started planting Hydrangeas to fill in the back. </div>
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This one is my pride and joy. I bought it sickly and sparse and have nursed it back to full bloom. </div>
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I love colorful flowers around the house - and they do very well here.</div>
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The children are especially hardworking and helpful - they enjoy weeding and deadheading the flowerbeds and always respond with enthusiasm when asked to help. </div>
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There's a city manhole cover in front of the house that I like to keep a pot of flowers on. </div>
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This is to the right of the porch, as you face the house. We planted a Rose of Sharon tree here and it has really taken off. </div>
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When in full bloom, it almost completely covers the bay window. It's so lovely to look out the window right into a mass of blossoms. This tree is a late Fall bloomer, so it lights up the yard w/ color when everything else is fading. <br />
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The view from the family room upstairs in Winter. </div>
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This is the right corner of the house. The bush in the back is a snowdrop bush and the only thing in the yard with white blossoms.</div>
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It blooms in Spring and then provides lush greenery for the rest of the season to hide the meter I planted it in front of. I added the 2 Hydrangeas last season. </div>
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Covering the cover!</div>
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Before we turn and go along the right side of the house into the back yard, here is the view looking across the front yard to the neighbors on the left, as you face the house. </div>
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Here is the view to the right of the house, as you stand facing it. </div>
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Looking down the street from the front yard in the Fall.</div>
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A spring sunset as seen from the front yard, no photoshopping or color editing!</div>
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Another spectacular sunset from the front yard in Winter. </div>
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More views of the trees up and down our street:</div>
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We think one of the best things about our house is the curb appeal. We hope when somebody new buys our home, that they will keep up the tradition we've begun of having some of the best and showiest flower beds around! One tip I can share with you is to make the kids a part of the yard work. We give them their own pot to plant with flowers every season. It's their job to tend their own plants.</div>
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If you give them half a chance, you will find that kids love yard duties like watering the lawn and helping to mow and will leave their play with a good will to tend to gardening chores!</div>
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That's the whole house and front yard. Follow me around the right side of the house (as you face the front of it). The plastic play equipment is gone, but the broken paver stones remain. </div>
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Both sides of the back yard are lined with lavender lilacs. They are taller than the 1st floor of the house and smell wonderful for about a week or so every spring. The kids have made paths through the small groves of lilac trees and call these their 'forages'. </div>
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Our yard looked like our (childless) neighbor's before kids.</div>
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The kids love being asked to go outside and pick up their playthings so we can try and keep the back yard looking as nice as the front -</div>
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once I get them outside, it's my secret evil plan to keep them there!</div>
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We have lots of pots for flower gardens around the back yard.</div>
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These bushes turn a gorgeous fire red in the Fall. </div>
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This is the back gate into the park.</div>
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The view into the park from the 2nd floor in Winter.</div>
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It can't take a 165 lb hunk of dog meat leaping on it - imagine that!</div>
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We grew a garden for a little while, but the chipmunks and squirrels got more of it than we did!</div>
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Last winter, the snow got so high that the dogs and kids could almost just step over the fence. </div>
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A people bush! They're growing all over it. Hope it's the sweet kind and not the sour.</div>
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Lots of good worms in our yards! We don't use weedkiller, chemicals, pesticides or even fertilizer companies due to our allergy/sensitivity kids. </div>
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We get a nest of baby birdies on the meter at the back of the house every spring. Or wait...screeching, bald, constantly hungry: these might be my own babies.</div>
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Mama is never far. </div>
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Sometimes a baby leaves the nest before it can fly well and they can seem to bond with people.</div>
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Now we come to one of the biggest assets of our home: the park! My kids practically live out there. All the neighbors along the block keep an eye out and know who's coming and going. I can see every foot of it from my back windows. It's a sports park w/ lots of softball and baseball and soccer games and lacrosse practices, but it also has a great playground, tennis courts and basketball courts.. The equipment was transplanted from the 1st school my kids went to here: Mark Twain. Right now as we're selling this house and booking showings, it's our saving grace that we can take a last minute showing by getting the dogs on their leashes and running right out into the park to wait it out. It's very dog-friendly and lots of neighbors bring their dogs in the evening when nobody is out there and we have a doggy playgroup. </div>
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It's wonderful not to have a neighbor behind you and to see that big, open expanse of green or white...or a massive, impenetrable bank of fog when you look out the back yard. I love knowing where my kids are all the time and it's been worth its weight in gold for severe food allergy kids who can't have playdates in their friends' homes. "Let's meet in the park!" </div>
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When my husband volunteers to coach the kids' sports teams, they play right behind the house. We've got a clean bathroom when we need it and a sink to wash hands in, in case of contact with teammates' unsafe foods. I can watch practice and be making dinner at the same time.</div>
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My kids all learned to ride their bikes on the grass in the park and to ride rollerbaldes on the tennis and basketball courts here. I'm glad I have taken as many great photos of it as I have to remember what a big part of their childhoods its been.</div>
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The park is one of the biggest features of our home that I am going to miss. In fact, we are hoping to find a home as close to a park in Oregon as we can get. As I've mentioned before, we'd rather have a park than a garage, even!</div>
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If you lived here, you'd already be home. :-)</div>
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So many wishes!</div>
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<span style="text-align: center;">We get a frozen lake out here that people actually come and ice skate on in the Winter. </span><br />
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A late night snowy Christmas break playdate in the park!</div>
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We get skiers in the park all winter, too. </div>
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Eerie tree at night. The glow is the playground.</div>
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This was sunset from my back door 2 Valentine's Days ago. No photoshopping or color editing.</div>
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This is my favorite tree in the park. It was planted the first spring of my first baby. I take pictures of it every year, knowing that it has been growing as long as he has. I get it in every season. I hope one of my good neighbor friends will take at least one a year for me after we move. </div>
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<span style="text-align: center;">The park is an awesome part of movie into our</span>-friendly life, I know, but I do feel obligated to let you know the one downside of it. Be prepared. This is what it looks like when you tell the kids they can't go to the park today:<br />
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And this is what it looks like when you go without the dog:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfS-nSHA9YX9yaqTZnKFTpX1dwOG1gWMNQEIGO_Z0yYt8tZeufXHr5lDrGQFqbeS79l2RRnvvuUurmQPcKpSpY_l40JOZDArb3XKhcjifwK5r5-oSv23bZscuzHljAuM6W87_E88CyFiVq/s1600/DSCF3352.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfS-nSHA9YX9yaqTZnKFTpX1dwOG1gWMNQEIGO_Z0yYt8tZeufXHr5lDrGQFqbeS79l2RRnvvuUurmQPcKpSpY_l40JOZDArb3XKhcjifwK5r5-oSv23bZscuzHljAuM6W87_E88CyFiVq/s1600/DSCF3352.JPG" height="300" width="400" /></a></div>
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Which brings us to the last selling feature of our home for allergy families: the school.</div>
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We worked with the local elementary school for 9 months to make it safe for our anaphylactic peanut allergy daughter.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEYboClSswSzxTr5aS5uwylbczF5Zv0o-sZI0vCRNmkIGFFy-RgI8NZCKb74025ql39r4mL3FXtucvUDvX84J6n6Bn7ltf1tB7Q4VKXoFajd5umyYr01vZKr8KHPqAZaTn5qkXJ7_sD5IH/s1600/IMG_1310.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEYboClSswSzxTr5aS5uwylbczF5Zv0o-sZI0vCRNmkIGFFy-RgI8NZCKb74025ql39r4mL3FXtucvUDvX84J6n6Bn7ltf1tB7Q4VKXoFajd5umyYr01vZKr8KHPqAZaTn5qkXJ7_sD5IH/s1600/IMG_1310.JPG" height="300" width="400" /></a></div>
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They went peanut restricted for the entire building and grounds when she started kindergarten 2 years ago. The classrooms were already peanut and tree nut free. </div>
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<span style="text-align: center;">They also had the standard "nut free" table in the cafeteria. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRaWFTdhj8dEn_TECRcl9PpGV0uLHi72pKJoC073Rz4fs28nOKlywLDj9uTMA1SWibxrDI02reexTm_n_2nJpU9252NmohishGszgZfOU4x-fxlzG8Ucxp9A0h5tepDbR6aSmA3UhU1H08/s1600/IMG_1321.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRaWFTdhj8dEn_TECRcl9PpGV0uLHi72pKJoC073Rz4fs28nOKlywLDj9uTMA1SWibxrDI02reexTm_n_2nJpU9252NmohishGszgZfOU4x-fxlzG8Ucxp9A0h5tepDbR6aSmA3UhU1H08/s1600/IMG_1321.JPG" height="300" width="400" /></a></div>
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<span style="text-align: center;">We are the 1st school in this part of the state to go completely peanut restricted. Many families request Oak Ridge as their school of choice for this reason. We have An allergy Awareness Committee, of which I was proud to be the chairperson last year. I know the mom who formed the committee and I know the mom who is taking it over and they both have children still attending the school and this makes me completely confident in asserting that this is the best school locally for children with food allergies. </span><br />
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We make posters identifying our food allergy students. We ask parents to bring in emergency kits w/ info and meds for allergy students.</div>
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Oak Ridge encourages you to bring in an Emergency Anaphylaxis Plan. The staff are very 504 proficient and knowledgeable.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI0XakpomQd3hX9LHlDeM57SqUy3VUxdjuOaZY2mIa_Ys0Wf1f82uUChJSv8Cx6mmPFZXxRHFrRbJObXT9GMuW65MVRdAI37vW4T5gKhxkxfvnU8YmuMCH2bvHPy92MqhP_coM5hhCF1Z_/s1600/DSCF2543.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI0XakpomQd3hX9LHlDeM57SqUy3VUxdjuOaZY2mIa_Ys0Wf1f82uUChJSv8Cx6mmPFZXxRHFrRbJObXT9GMuW65MVRdAI37vW4T5gKhxkxfvnU8YmuMCH2bvHPy92MqhP_coM5hhCF1Z_/s1600/DSCF2543.JPG" height="400" width="300" /></a></div>
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Dr. Parrott is the awesome Principal at Oak Ridge. He is a wonderful advocate for all of our allergy students, remaining steadfast yet sympathetic to parents and students on each side of the issue. The bottom line is always clear with Dr. Parrott and the bottom line is following district policy to the letter. Dr. Parrott also works very closely with Dr. Doshi to help keep all students at Oak Ridge safe.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfAWsFj1juhJlBo3HlTRTkoq4gdQeNlrqwZf8A4jVZwV4xq1xJM536MqJq1dat5gskf7dJSOreynv5OK_wWNBo-FhyphenhyphenF0bn6c160dofEM7CK8RDA5wVSuUq24RKSj7GzzobIxuiwZqLqXh8/s1600/DSCF2571.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfAWsFj1juhJlBo3HlTRTkoq4gdQeNlrqwZf8A4jVZwV4xq1xJM536MqJq1dat5gskf7dJSOreynv5OK_wWNBo-FhyphenhyphenF0bn6c160dofEM7CK8RDA5wVSuUq24RKSj7GzzobIxuiwZqLqXh8/s1600/DSCF2571.JPG" height="300" width="400" /></a></div>
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Miss Sue is the secretary at Oak Ridge and the 1st line of defense for our food allergy students. She goes out of her way to help students dealing with health issues and my youngest became quite attached to her as he transitioned to better health and the ability to attend school for full days.</div>
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We have special procedures, containers and notifications for when peanuts or other restricted allergens accidentally make it into school. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXOLjgk-V2MA7PyL9Rn5nFUXCY7F2O1okLcyYZQjHNRCLFGFZmoO1xuQ8tJKRV50jWdDawhpYW4JuBEH2hyphenhyphentAg4sVCnCji-W8qMIX8Hj4LNOVxMEIz-X_YTUpAID3mIIXGV24j5gdU5zZ1/s1600/IMG_1605.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXOLjgk-V2MA7PyL9Rn5nFUXCY7F2O1okLcyYZQjHNRCLFGFZmoO1xuQ8tJKRV50jWdDawhpYW4JuBEH2hyphenhyphentAg4sVCnCji-W8qMIX8Hj4LNOVxMEIz-X_YTUpAID3mIIXGV24j5gdU5zZ1/s1600/IMG_1605.jpg" height="400" width="300" /></a></div>
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We make sure all staff are trained in the use of Epi-Pens and Auvi-Qs, even subs. </div>
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We remind parents throughout the year of our food safety policies, including over the holidays and during field trips, class parties and other outings and celebrations. </div>
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There are signs up all over school promoting awareness and we decorate the halls with a theme for Food Allergy Awareness Week every year. </div>
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In addition to all of this, our school sits literally right next door to one of the top allergists in the state. Dr. Devang Doshi is the head of Pediatric Immunology and Pulmonology at Beaumont Hospital in Royal Oak. If your child has a severe reaction or asthma attack at school, trust me - you want it to be a school next to Dr. Doshi!</div>
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If that wasn't enough to make you want to move into my house with your allergy kids on the spot, one of our local fire stations is also practically on school premises. The back of the fire station butts up to the rear parking lot of Oak Ridge.</div>
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The 1st year of the new peanut restricted policy, the ROFD let us redirect parents to drop off their donated peanut-containing candy into this bin in their parking lot, to keep it off school property.</div>
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My son hit his head on a pole last year and got a goose egg and the school ended up calling 911. The paramedics were there in 2 minutes.</div>
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I hate that by moving away, we are giving up this kind of response time with kids as seriously allergic as mine. </div>
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Finally, Beaumont hospital is a straight shot just a few minutes right down 13 mile Road.</div>
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Across the street from Beaumont is the other best allergist around, Dr. Abdul Bahrainwala. If one of my allergy kids has a serious reaction at school and Dr. Doshi isn't in or can't fit us in - we go straight to Dr. B.</div>
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Either way, my child is with a top expert who knows everything about their issues within minutes. He's also the guy who advocated for my daughter and recommended the school go peanut free and helped us through the process. You can't put a price on that kind of safety net and support system!</div>
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Finally, as many of us have learned the hard way, you can have the best school district, the best Principal, even the best other parents in the world...and none of it will make a bit of difference when you need it to, if the teacher isn't on board. </div>
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I've been an Oak Ridge parent for over 8 years now, through 5 kids. There are only a couple of teachers that didn't have my kids in their classroom. Oak Ridge teachers were amazing in their open-mindedness and concern for the safety of all food allergy, celiac disease and asthma children in their classes.</div>
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One teacher who really stood out was the one who got my son with the skin and growth disorders. His condition requires constant lotioning throughout the day or he becomes red, itchy and flared up until he can't do anything but scratch and cry.</div>
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This is my guy with a classmate the same age as him. Not only did his 1st grade teacher stop whatever she was doing constantly throughout the day to remind him to do it or to lotion him herself, she made sure there was someone else to do it if she wasn't going to be there. Dr. Parrott checked in on him throughout the day constantly when there was a sub. I simply can't imagine there is another school anywhere that cane make me feel as safe and comfortable about the care of my son and debilitating issues than Oak Ridge's Kate Rybicki (and her parapro, Miss V!)</div>
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Royal Oak Middle and High Schools are also allergy aware, although peanuts are not restricted from the cafeterias. </div>
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So there's my allergy-friendly life in this home, and you're welcome to step into it. It's been a wonderful life in a fantastic home. Babies have been born in this house.</div>
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They've been nurtured and loved and have grown like weeds in this house. When they outgrew it, we made it bigger. Now they have their own room to grow in their own space. If your family is large or growing that way, your children won't have to squish up together in small places to sleep. In this house, they'd never have to huddle up with the pets to sleep. </div>
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No perching on uncomfortable surfaces to sleep for any family in this spacious home!</div>
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Whether or not they will anyway is a different story!</div>
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This home is in a wonderful place. There are great neighbors here. Well, there is one gang of noisy, unkempt kids you should keep an eye out for - oh wait, I think most of those are mine! Nevermind.</div>
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None of the 3 families that have owned this home have gotten divorced. All of the children born while living at this address have gone on to lead very successful lives, making their parents very proud. I am sure ours will, too!</div>
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This is the house people come by to see the fabulous flowers. This is the house all the kids in the neighborhood end up playing at most days over the summer. Lucky for you, all the parents around here know my allergy kids can't come to their homes, so they let their kids come here all the time. If you move here, you won't have to go through the social awkwardness of one-sided playdates. As soon as you mention food or severe environmental allergies, it will click into place for them as they remember us!</div>
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Odds have been overcome in this house -astronomical odds stacked against members of our family. Disasters have been averted, lives have even been saved. This house has only been lived in by heroes who save lives and risk their own for others - 2 firemen and one police officer. Catastrophic illnesses have been diagnosed and treated and made manageable. Quality of lives have been drastically improved. Gratitude lives here alongside overwhelming love. </div>
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There's good juju in this house. The people who have lived and loved in this house have received untold blessings. Even the garbage men seem to recognize this and stack our cans reverentially. </div>
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We've raised our children in this home with love and respect and that's what they give back to the world. </div>
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We put our hearts and souls into this house, but we're ready for our next adventure. The kids are so excited to move, they are practically percolating. </div>
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So if you've been looking for an allergy-friendly house in the Royal Oak area, I just sat down all day today and wrote this for you. Your house is waiting for you, we'll take care of it until you move in. </div>
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Don't delay, because if you need a house like this and it sells to someone who couldn't care less about all the allergy benefits, that would almost be a crime. </div>
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You're not going to have to deal with new paint, new carpet, carpet that just got cleaned, pet dander, mildew or mold anywhere before you move into this house. Or the consequences of dealing with those issues. If I could find this house in Oregon, I'd be overjoyed. Every house we are looking at is going to require between $15, 000 and $18,000 worth of replacing carpeting with hard floors. Everyone seems to have cats, so add another $1200 or so to get the ducts cleaned -and then most houses have outdated or nonfunctional filtration systems, too. Those can be between $1,000 and $6,000. </div>
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<a href="http://matrix.realcomponline.com/matrix/shared/J3BW34pcsXDd/1606AMELIAAvenue">http://matrix.realcomponline.com/matrix/shared/J3BW34pcsXDd/1606AMELIAAvenue</a></div>
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~Jack, </div>
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Mumma2wldthings@mac.com</div>
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jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com2tag:blogger.com,1999:blog-2681304994711387294.post-80758808768929989922014-02-28T09:31:00.000-08:002014-02-28T09:32:57.105-08:00DONATE YOUR AUVI Q TRAINER TO EMERGENCY RESPONDERSAs an allergy parent, you do everything to keep your child safe. Work with their school, provide safe alternative foods, make sure they wear they MedicAlert jewelry, make sure they always carry their Epi-Pen or Auvi-Q...<br />
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But did you ever stop to think what would happen if the person responding to your child in an emergency/anaphyactic situation was not familiar with your child's epinephrine device?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbDJQvQnNPpus6qAhah1rirVFQ5JDe0rlhI_OqsRN0yGlkww8y4sa7zROH7gSK3cg-8yW-mVS_pQzuS7KJgt9KUC90mCri0wRHOIGF6uFHdNB1SFvAZt4I08tbNYoqHNdlvgbuP-YvGSC8/s1600/IMG_5698.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbDJQvQnNPpus6qAhah1rirVFQ5JDe0rlhI_OqsRN0yGlkww8y4sa7zROH7gSK3cg-8yW-mVS_pQzuS7KJgt9KUC90mCri0wRHOIGF6uFHdNB1SFvAZt4I08tbNYoqHNdlvgbuP-YvGSC8/s1600/IMG_5698.JPG" height="240" width="320" /></a></div>
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This realization just hit me last night as I was chatting with a friend who happens to be a local emergency responder.<br />
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We had just replaced all of our expired Epi-Pens with the new Auvi-Qs and had a trainer lying on an end table, so my children could practice and get more familiar and comfortable with it. My friend picked it up, turned it over a couple of times and asked, "what's this - - a cell phone battery?"<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiB95jPyNrWxY7OlmnIi8zVHe2HXbDPJlt0IfFnkcFsrD7OtVoKhgSaD0HWhOccInnz1CMNxiqUxv8vdilHeQuMnzwxO4h30lz-bDcotSqMYMJpuEGKQAmzM_ZqAFGJ-dFvSNQROg7O5PG/s1600/IMG_5700.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiB95jPyNrWxY7OlmnIi8zVHe2HXbDPJlt0IfFnkcFsrD7OtVoKhgSaD0HWhOccInnz1CMNxiqUxv8vdilHeQuMnzwxO4h30lz-bDcotSqMYMJpuEGKQAmzM_ZqAFGJ-dFvSNQROg7O5PG/s1600/IMG_5700.jpg" height="320" width="240" /></a></div>
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I guess I never stopped to wonder how and when emergency responders get trained and how long it takes for a new device procedure to trickle down to them. If they only do in-service trainings a couple of times a year, I really don't want to wait and hope my child doesn't need their help one day at school, before the responder has learned about the Auvi-Q!<br />
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When we first got them, I showed my children's teachers and all other school staff how they worked and left a trainer for them to teach substitutes and new employees, but I never thought about the emergency responders in my city.<br />
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I promptly gathered all the trainers we could spare, taught my friend how to use one and told him to keep one to train his colleagues. I also asked him to deliver one each to the other 2 fire departments in our city.<br />
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My husband works for the city, so I sent him one to donate to the police department, as well.<br />
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This is my allergy tip for other allergy parents. Consider calling your local PD and/or Fire Dept and offer to donate an Auvi-Q trainer. Show them how to use it when you bring it in. Even if they don't have a formal training session scheduled anytime soon, ask them to make sure all emergency responders familiarize themselves with this product.<br />
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They might already know all about it, but you also might just help save a life if they don't!jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com1tag:blogger.com,1999:blog-2681304994711387294.post-60863402627470520202014-02-25T11:23:00.000-08:002014-02-26T16:46:37.622-08:00Why does my kid have to be forced to celebrate your kid's birthday at school in the first place?<br />
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<a href="http://www.huffingtonpost.com/todays-mama/why-do-your-kids-allergies-mean-my-kid-cant-have-a-birthday_b_4767686.html" target="_blank">http://www.huffingtonpost.com/todays-mama/why-do-your-kids-allergies-mean-my-kid-cant-have-a-birthday_b_4767686.html</a><br />
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Somebody shared the article above with me last week. I normally don't have the desire, time or energy to jump into the negatively fueled discussions about food allergies in schools anymore. However, after reading this article I had to write a rebuttal to point out a few things I think the author might be missing.<br />
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Let me start this article by saying that I have always been clear on the fact that I don't send my kids to school to have parties. Food allergy issues aside, it has always bothered me that part of choosing public school for my children has meant allowing more occasions than I can shake a stick at for eating junk and party food.<br />
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Even before food allergy issues reared their ugly multi -heads in our family, I didn't agree with the excessive amounts of unhealthy treats that my kids were bombarded with at school on a weekly (or more!) basis. Birthday parties for a classroom of 25-30 students meant at least one birthday celebration a week. Then there were holidays. Then rewards of food treats for reaching a classroom goal - usually a pizza or ice cream Friday. Don't forget the PTA ice cream social or the end of the year hot dog and ice cream picnic on one specific day, as well as all of the individual class room parties for the same occasion. If I want my kids to feel like they are doing something special for me on Mother's day, there's Muffins for Moms. If my husband wants the same on Father's Day, there's Donuts for Dads. There are also the activities like Walk to School Day (to promote exercise and getting outside) that ends, ironically, with a feeding frenzy at a Krispy Kreme laden table. The foods at all of these celebrations are always convenient, easy and terrible for your health. Krispy Kremes, store bought cupcakes and candy and pizza seem be the party foods of choice at our school.<br />
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The Kindergarten teacher likes to bake a gingerbread cake in the classroom and bring in cookies shaped like the individual United States when she teaches the kids geography. The remedial reading teacher has a jar of candy to offer as rewards for a job well done. So do a few of the other lower grade teachers. The Safety and Service Squad students get hot cocoa and pizza every so often to reward them for their hard work. Then there's the cupcake sale during class hours so students can go buy and eat cupcakes as a snack during class time (for a good cause!) and we have fundraising Bagel Day once a month for the same reason. We also have a Field Day full of outside sports and athletic activities that ends in popsicles and ice cream bars for the students. I could go on and on.<br />
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We probably could have gotten away without feeding our kids dinner for most of the school year with all of the ruined appetites and extra calories they were getting at school.<br />
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Then our district consolidated and our classrooms bulged to the bursting point and teachers realized it was simply taking too much class time to celebrate birthdays with parties during class time. Thankfully, the most frequent excuse to help increase the rate of childhood obesity and potential for adulthood diabesity in our local students was banned. We now recognize birthdays with a special routine, privilege or non-food keepsake in the classrooms.<br />
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Fast forward to today, where we have since had five kids in seven years, six years ago. They're all in public school now. All five are intolerant or actually allergic to dairy and completely avoiding every trace of it and the three younger ones all have multiple severe to life-threatening food allergies. Not that you'll remember (because even I barely can) and not that it really matters (because the bottom line is it means they can't eat ANYthing unless it came from home) but their allergies are:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpFQAiu6FlFFZ61tSdQrI2tAr2nPTeI0B6dR3O-cRcPodF1FTDbN46XjR8zUtU_byDPio3SfyJ4rfwkV-YWRrUz8-Q1r8Fr8xreNpGdDkZVQNASt-_3SUv46N22LzazLqKHrDG9lEoP7bS/s1600/allergy+kit+school.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpFQAiu6FlFFZ61tSdQrI2tAr2nPTeI0B6dR3O-cRcPodF1FTDbN46XjR8zUtU_byDPio3SfyJ4rfwkV-YWRrUz8-Q1r8Fr8xreNpGdDkZVQNASt-_3SUv46N22LzazLqKHrDG9lEoP7bS/s1600/allergy+kit+school.jpg" height="300" width="400" /></a></div>
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Our school eliminated the classroom birthday parties and restricted peanuts from the entire premises and tree nuts and peanuts from the class rooms, but the rest of the food- in- the -classrooms-occasions continue. I used to try and keep up by making my own safe and healthier version of the treats provided so my kids wouldn't feel left out. Besides feeling like a Grinch every time I had to explain why I would not be contributing to the class party fund (ummm, because I have to try and figure out how to make a "dirt cup with worms" without being able to use 'real' pudding, oreos or gummy worms and it's going to cost me quadruple the time and money it is going to cost any non-allergy mother to include their child in this holiday party?), I resented that my kids were being fed sugary crap in the middle of the day and taught to associate bad choices in food with happiness and fun at a holiday.<br />
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I also resented them coming home looking like my 4th grader did 2 weeks ago and having no idea whether it was from traces of foods in the classroom or industrial cleaners or what.<br />
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When foods can harm or even kill your children, you tend to lean toward de-emphasizing foods as a central part of bonding or socializing and focus more on the meaning of the occasion or the relationships of the people involved. At every turn, school and other well-meaning parents were undermining my attempts to keep my children safe and included. Not to mention that with five kids, it was almost impossible to keep up with the expense and effort of all of their classroom parties.<br />
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The parties aren't fun for food allergy kids. They are exclusionary, they are anxiety-inducing and for many, they cause uncomfortable reactions. The author of this article specifies that she wouldn't expect life-threatening allergy students to be exposed to their allergens, but anyone with lesser allergies should just learn to deal with it. Their parents should figure out what to do for them and her child should not be denied the right to their party because of non-life- threatening food allergy.<br />
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That goes for the little girl in my son's class with Celiac Disease who gets a stomach ache every Bagel Day and has to ask the teacher if her classmates can please wrap up their bagels. It goes for the little boy who is embarrassed about his lumpy, homemade dairy and soy free cupcake that would rather stuff it back into his lunchbox than be asked or teased about not getting one of the "normal" ones everyone else is eating. It goes for the diabetic kid and the vegan kid and the kosher kid and the GMO free, all organic kid and it goes for the ADD/ADHD kid who doesn't get to eat processed sugar or dyes.<br />
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In America today, every classroom is estimated to have at least 2 students with food allergies and 1 in 3 children headed for diabetes (<a href="http://www.worldhealth.net/news/one_in_three_us_children_born_in_2000_wi/" target="_blank">http://www.worldhealth.net/news/one_in_three_us_children_born_in_2000_wi/</a>) and 1 in 3 with obesity, but let's ignore all of them and their needs and what these foods are doing to them because "normal" kids have a right to their unhealthy foods wherever and whenever they want.<br />
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If I were having a conversation with the author, I'd love to ask where the sense of entitlement comes from that causes her to feel that every student in her child's classroom has to celebrate her child's birthday, anyway? Just as she asks how allergy parents dare to inconvenience her child's right to allergen-laden party food, I would like to ask how she has the audacity to take my child's educational time away to encourage poor eating habits in a nation plagued by an epidemic of obesity and increased potential for adulthood diabetes in our children, as well as Celiac Disease and food allergies?<br />
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Won't her child get a party at home? Won't that child have a chance to celebrate with friends over the weekend? How many times does her child have to eat junk food and serve it to other people's kids who may not even have been interested in attending her child's party, if not compelled to do so by being in the same classroom? If we allergy parents should keep our "preferences" to ourselves, shouldn't you, also? In fact, isn't the intrusion of your non-curriculum based party in a public school the only reason we have to speak up in the first place?<br />
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Here's an idea: you keep your parties out of our child's classroom and we'll keep our food allergy requirements out of your life.<br />
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My youngest son has skin allergies in addition to his anaphylactic ones. Holiday parties almost always result in him breaking out in hives, turning red and scratching incessantly. On their Dr.s advice, I finally stopped trying to provide their own foods so they could feel included and just started bringing them home every time there is a food-based event in their classroom. Before we started doing this, this is what my skin-allergy child looked like for most of his year in Kindergarten:<br />
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I know the author generously makes allowances for life-threatening allergies and concedes that classrooms should not have parties with foods that contain those allergens (and I do thank her on behalf of my child who has had several anaphylactic reactions), but this is what a child with skin allergies (i.e., open skin disorders, eczema, atopic dermatitis, etc...) might be like after a day of being exposed to and in constant contact with his allergens:</div>
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Keep in mind that this photo was taken at 4 am, and yes, that's blood on his wrist where he scratched his hives wide open after being in itchy torture all night. It's not life-threatening by any means, but I guess my kid feeling like this isn't worth as much consideration as your kid having a cupcake in the classroom.<br />
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Foods need to be removed from classrooms. More and more schools are realizing it just isn't worth the risk anymore. Food allergies are already at epidemic proportions - and on the rise. Most serious reactions occur in previously undiagnosed children.<br />
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Eating in a lunchroom surrounded by their allergens is already the riskiest part of most food allergy students' days. However, a lunchroom gets the tables cleaned in between lunch sessions. A student is only sitting there for about 20 minutes at a time and it's usually a very large, airy room. When foods are brought into the much smaller and more contained classroom, the parties can be for 30 minutes - or they can be all day. Nobody has to clean every single desk when the party is over. Children aren't made to sit down in one place to eat, but can mill and wander around, spreading cross-contamination everywhere.<br />
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So, if a school keeps foods in the cafeteria only, an allergy child is at risk of direct exposure and cross-contamination for roughly 20 minutes a day. In a classroom party, that risk goes up to 7 hours a day. Add up all the occasions most schools have for bringing foods into the classrooms and multiply by that 7 hours and you might begin to understand why allergy parents would ask you not to bring in items containing their child's allergens.<br />
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Why couldn't we celebrate with non-food items like games and activities? Children could make memory books and sign them for each other. They could write warm fuzzies to each other about something they admire about each other. They could exchange themed pencils or Silly Bandz or the Crazy Loom bracelets all the kids are making today. I know I'd much rather chip in money to help pay for parties like this than for junk food. I know my children would cherish the keepsakes from these parties far more than the stomach aches and sugar jitters some of their classmates end up with.<br />
The schools will save wear and tear on the carpeting in the long run, too.<br />
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I hope this helps to answer the entitled question of the article I am responding to. As far as we food allergy parents are concerned, your child can have all the birthday parties s/he wants. Just not where our children have to be unwilling victims made to feel like their health and safety come in second place to a party food.<br />
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<br />jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com73tag:blogger.com,1999:blog-2681304994711387294.post-10222088619145357452013-12-30T10:45:00.002-08:002013-12-30T10:45:44.825-08:00today's dose of humility. <div role="article">
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i never saw it coming today.<br />just when you think your kids are finally old enough<br />to observe social decorum and not humiliate you<br />into a puddle on the floor - - don't.<br /><br />we're at the allergist's office, getting jonah's weekly shots.<br />it's crowded.<br />the dr.s are helping do the shots.<br />two of them paused between patients to have a casual conversation with me. </div>
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of course there had to be half a dozen nu<span class="text_exposed_show" style="display: inline;">rses<br />in the crowded shot area, as well. and at least five patients.<br /><br />a well- accessorized woman walks past on her way out when suddenly jonah exclaims,<br />"i know what she has! she has a SNATCH! my sister has one, too! jovie loves hers! she got a pink one!! right, mumma??"<br /><br />funny how the heat of extreme shame and humiliation can be felt so differently at different times. this time it felt like it was starting behind my eyeballs and creeping down from my scalp simultaneously. i felt my ears glowing. but the backs of my legs felt afire, too. interesting, right?<br /><br />all conversation came to a screeching halt. all eyes turned to my very loud son, and then scathed their way over to me. i could see the dr.s' eyes start to search the room frantically, for a way out, any way out. a nurse's mouth hung open. a patient clutched her young child to her ample bosom in horror. another nurse dropped the basket of stickers, seemingly in slow motion.<br /><br />oblivious, he continued in his quest for confirmation and validation,</span></div>
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<span class="text_exposed_show" style="display: inline;"> "right, mumma? you know? jovie has a SNATCH like that, but her SNATCH is not so big - she can't put anything in it</span></div>
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<span class="text_exposed_show" style="display: inline;"> but her epi-pen..."<br /><br />i saw my hand starting out toward his mouth seemingly of its own accord, disembodied from me, as if even my own limbs would dissociate themselves from this abominable public shame. hand clawed into a clamp to press over his mouth. </span></div>
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<span class="text_exposed_show" style="display: inline;">possibly hard enough to dislodge teeth.<br /><br />"that's not called a SNATCH, silly," jovie interjected imperiously, visibly pleased to be correcting her older brother, </span></div>
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<span class="text_exposed_show" style="display: inline;">"it's a CLUTCH! and mine isn't pink, it's ROSE."<br /><br />snatch, clutch, anyone could make that mistake!</span></div>
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<span class="text_exposed_show" style="display: inline;"> it happens to other people too, i'm sure. </span></div>
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<span class="text_exposed_show" style="display: inline;">i'll be hiding in bed for the rest of my life if anyone needs me.</span></div>
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jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com0tag:blogger.com,1999:blog-2681304994711387294.post-24695590394492387572013-12-30T09:07:00.000-08:002014-01-19T08:30:31.742-08:00Elderberry Syrup Recipe<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #4e5665; font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 11px; line-height: 14px;">i have used elderberry syrup for years (in conjunction with plenty of vitamin d in the form of cod liver oil for optimal immune function) for my entire family to stave off the bugs during the darker, colder months. recently i discovered that my favorite brand has more additives and ingredients than i think are beneficial or health-promoting. therefore, i've decided to throw my hat into the ring with all the mamas who make their own. </span></span><br />
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<span style="color: #4e5665; font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 11px; line-height: 14px;">i chose to add echinacea for extra immune-boosting support, ginger for sensitive tummies and cinnamon to help regulate all the sugar from the honey (which is necessary as a preservative). having multiple food and seasonal allergy children, i only use raw local honey for the added allergy benefits. i divide it with manuka honey for the amazing anti-viral and anti-bacterial properties - i'm convinced we've already avoided the strep throat that is rampant in the public schools all 5 of our kids attend right now.</span></span><br />
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<span style="color: #4e5665; font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 11px; line-height: 14px;"> if comparing our rate of illness to classmates isn't convincing enough, in our house the only one who avoids taking elderberry syrup preventively during the entire school year is my husband. and guess who is the only one that gets sick every winter? he's got a nasty cough and sore throat right now, in fact -while the rest of us have successfully fought it off for a couple of weeks by taking elderberry preventively AND at every symptom! hubby is taking it multiple times daily now and still able to go to work and eat regular meals, so i know it helps lessen the severity and duration of illnesses when taken after the onset of a bug, but our goal is complete avoidance!</span></span><br />
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<span style="color: #4e5665; font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 11px; line-height: 14px;">here's how we do it:</span></span><br />
<span style="color: #4e5665; font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 11px; line-height: 14px;">starting on the first night of school, we begin taking 2 TBLspn before bedtime, along with the appropriate dose per child of cod liver oil and probiotics. once we lose the summer sun, we need all the vitamin d, good gut health and immune support we can get here in the dark-dayed middle west. if anyone complains of tickly ears, stuffy or runny nose, sore throat, headache or queasy belly, they get 2 TBLsp every 3-4 hours, sometimes more if the symptoms come back more often. i've done this even with my toddlers and never had anyone feel sick or suffer any side effects from "too much elderberry". we also make popsicles, fruit smoothies and even coconut milk ice cream out of it for sore throats and turn it into a natural soda with sparkling mineral water if anyone is vomiting. for our family of 7, we double the recipe below and it usually lasts us a couple of weeks, with enough extra to share a bottle or two with friends.</span></span><br />
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<span style="color: #4e5665; font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 11px; line-height: 14px;">we also reuse tiny extract or essential oil bottles and send small amounts to school with the kids for any extra immune boosting needed during the school day when illness is trying to invade us at home or is present in the classroom. whether they feel symptoms or not, i encourage them to drink the tiny bottle with their lunches at school. </span></span><br />
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<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[9]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">COMBINE AND BRING TO BOIL:</span><br />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[11]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">4 C distilled/spring water</span><br />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[13]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">2 C dried elderberries**</span><br />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[15]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">1 1/2 organic broken cinnamon sticks</span><br />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[17]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">2 TBLsp pure dried cranberries * </span><br />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[19]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">2 TBLsp pure or blended dried/powdered echinacea*</span><br />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[21]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">2 Tblsp dried/grated ginger root</span><br />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[21]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;"><br /></span>
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[21]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">( *these ingredients can be found in a pure form in better quality (single ingredient) herbal teas, as well - and you can use the contents of the tea bag in this recipe.) </span><br />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[21]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;"><br /></span>
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[21]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">(** families local to the royal oak, michigan area can order 'frontier' brand elderberries through Nutri-Foods health store on main street in royal oak and save yourself the cost of shipping incurred when ordering online).</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNkltMtweaTAl8A3x0gZm9R2P_FiIBgCyuYCAQwXIBj-sb_J99qavVBc3FPxYmS3MSH9HGbEquah2OiikEMTTnz_x8_3kyEapqWPygA216HXY_mz4gbwboxiQYXCooRGOgKPw9k3niRvJj/s1600/IMG_5057.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNkltMtweaTAl8A3x0gZm9R2P_FiIBgCyuYCAQwXIBj-sb_J99qavVBc3FPxYmS3MSH9HGbEquah2OiikEMTTnz_x8_3kyEapqWPygA216HXY_mz4gbwboxiQYXCooRGOgKPw9k3niRvJj/s1600/IMG_5057.JPG" height="240" width="320" /></a></div>
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<span style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">SIMMER APPROX 45 MINS OR TO 1/2 REDUCTION</span><br />
<br data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[26]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;" />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[27]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">STRAIN W/ FINE MESH STRAINER REPEATEDLY, MASHING BERRIES INTO A PASTE W/ A FLAT/WIDE SPOON.</span><br />
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<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[30]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">ALLOW TO COOL 10 MINS</span><br />
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<br data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[35]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;" />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[36]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">10 oz - 1.5 C manuka or local raw honey, adjusted to taste. </span><br />
<br data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[38]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;" />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[39]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">WHISK SLOWLY UNTIL BLENDED THOROUGHLY. </span><br />
<br data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[41]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;" />
<span data-reactid=".r[1qvz].[1][3][1]{comment10202873687189183_7823667}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[42]" style="background-color: #fafbfb; color: #4e5665; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">(taste clarifies and "brightens" after refrigeration overnight. enjoy in good health!)</span>jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com0tag:blogger.com,1999:blog-2681304994711387294.post-7775145847390743132013-04-28T11:01:00.000-07:002013-04-28T11:08:42.081-07:00that still, small voice<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyBdErkCcNRuKC8Wdtj19rkafKPvH6SDsTCUMZZgMmxX9J63ail14nLk2KmPLArjAHjrZEVvp1T0BITo1W1xVG60AEk325sxs3eIO5vZAtvkcDYrIfhNbYAAG9Py4IMPxmTdGpYWRNysWx/s1600/IMG_0009.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyBdErkCcNRuKC8Wdtj19rkafKPvH6SDsTCUMZZgMmxX9J63ail14nLk2KmPLArjAHjrZEVvp1T0BITo1W1xVG60AEk325sxs3eIO5vZAtvkcDYrIfhNbYAAG9Py4IMPxmTdGpYWRNysWx/s400/IMG_0009.JPG" width="400" /></a></div>
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<span style="background-color: white; color: #37404e; font-size: 13px; line-height: 18px; text-align: left;">today 'lou's soul-searching discussions for this morning's soak & seal turned theological. </span></span><br />
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<span style="background-color: white; color: #37404e; font-family: Georgia, Times New Roman, serif; font-size: 13px; line-height: 18px; text-align: left;">he asked me, </span><br />
<span style="background-color: white; color: #37404e; font-family: Georgia, Times New Roman, serif; font-size: 13px; line-height: 18px; text-align: left;">"mumma, do you b/l in god?"</span><br />
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<span style="background-color: white; color: #37404e; font-family: Georgia, Times New Roman, serif; font-size: 13px; line-height: 18px; text-align: left;">i replied, </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; color: #37404e; font-size: 13px; line-height: 18px; text-align: left;">"honey, i just don't know for sure. i don't like to tell a fib and say i do just b/c everyone else does - but i also know i don't know everything and i could be wrong if i decide he doesn't exist...so i just keep an open mind and learn from everyone el</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-size: 13px; line-height: 18px; text-align: left;">se who might know more than me about it. it's hard for me to understand a god who loves us but never comes to see us or talk to us."<br /><br />he considered carefully before replying, ducking his head and blowing bubbles in his bucket soak in consternation.<br />"well, he's a spirit, so maybe he comes but we can't see him with our normal-human eyes. i bet superman could see him. or maybe he looks like a normal person and we don't know its him. and he DOES talk to us - our heartbeep is him talking- can't you ever hear it?"<br /><br />by now i had him sitting on the half-wall, applying his lotion from scalp to toe. i felt my mouth curl into a smile at his interpretation of "heartbeat" and what his great ellen had once told him about hearing god speak in her heart. i tried clumsily to explain the symbolic meaning of hearing god in your heart, but he waved me off impatiently.<br />"your boobies must be too big to hear yours, listen to mine!"<br /><br />and he thrust out his scrawny baby chest at me.<br /><br />i laid my ear obligingly over his rack of ribs and listened contentedly to </span><span style="background-color: white; color: #37404e; font-size: 13px; line-height: 18px; text-align: left;">the </span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; color: #37404e; font-size: 13px; line-height: 18px; text-align: left;">tha-thump, tha-thump</span><span style="background-color: white; color: #37404e; font-size: 13px; line-height: 18px; text-align: left;"> </span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: Georgia, Times New Roman, serif; font-size: 13px; line-height: 18px; text-align: left;">rhythm of his toddler-sized heart.<br /><br />i smiled benevolently at him and told him what i heard. just a<br />tha-thump, tha-thump,<br />no words, unfortunately.<br /><br />at which report he smiled just as benevolently back at me and advised,<br />"your ears must not work so good either. that's not saying<br />"tha -thump, tha- thump",<br />it says<br />"love- ya, love-ya"<br />- i hear it every night when i lay down to go to sleep and everything is quiet."</span><br />
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jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com2tag:blogger.com,1999:blog-2681304994711387294.post-83549796490148513742013-03-29T09:10:00.000-07:002013-03-29T09:10:36.254-07:00orange julius/cream cooler and shamrock shakes for the rest of us!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6gAJdQOi1WzOY-4iu916sXYeeCzDmP-yBJfFw70MCo18Ng2c1A2rAWb_mPokufmw3VMFO2uBHgakWrHm-4-9_Ua2BCeYt7oFE8X6CLJemN-ysBUIN2NPOcotuq0YuUz30XBiJb1bzPd9H/s1600/578186_10200910023578820_1665513566_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6gAJdQOi1WzOY-4iu916sXYeeCzDmP-yBJfFw70MCo18Ng2c1A2rAWb_mPokufmw3VMFO2uBHgakWrHm-4-9_Ua2BCeYt7oFE8X6CLJemN-ysBUIN2NPOcotuq0YuUz30XBiJb1bzPd9H/s400/578186_10200910023578820_1665513566_n.jpg" width="300" /></a></div>
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Here is an allergy-friendly and healthier option to some popular shakes.</div>
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My allergy kids have actually never had traditional shakes and they went absolutely wild over these. I made them every night for a week and put one in his lunch daily and my tiny failure to thrive guy gained 2 lbs in 2 weeks!! They even tasted better than the "real" thing to hubby and I and other friends who've had the fast-food versions. i originally tried some of the alternative recipes being shared amongst food allergy friends and healthy eaters on FB and this recipe is how i ended up tweaking and modifying them. i shared my recipes on my FB page, as well - and got many rave reviews, so i've decided it's worthy to be on my food allergy blog. enjoy!</div>
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<u>Shamrock Shake/</u></div>
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<u>Chocolate Chip Mint Shake</u></div>
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1 can/ 13.66 oz whole coconut milk </div>
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(we prefer thai kitchen brand)</div>
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13.66 oz other alternative milk (hemp, rice, soy, or almond if allergies permit)</div>
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(i use the empty coconut milk can to measure and dispense the 2nd milk)</div>
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4 Tbs raw, (preferably local!) honey</div>
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1 tsp vanilla extract</div>
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1 tsp peppermint extract (can sub approx 10 whole mint leaves if preferred)</div>
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(can increase carefully for stronger flavor - a little goes a long way!)</div>
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1 avocado (can sub 1 1/2 bananas if preferred)</div>
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1 small handful kale/spinach/dark green leafy (for color)</div>
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2 cups ice</div>
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1/3 C chocolate chips (optional - we like 'enjoy life' brand)</div>
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blend and enjoy! you can make this thicker by adding more avocado, if desired. </div>
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<u>Orange Cream Cooler/</u></div>
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<u>Orange Julius</u></div>
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1 can/ 13.66 oz whole coconut milk </div>
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(we prefer thai kitchen brand)</div>
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13.66 oz other alternative milk (hemp, rice, soy, or almond if allergies permit)</div>
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(i use the empty coconut milk can to measure and dispense the 2nd milk)</div>
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4 Tbs raw, (preferably local!) honey</div>
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1 tsp vanilla extract</div>
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1 tsp orange extract </div>
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(can sub approx 1/2 C fresh orange or orange juice if preferred - adding about 1 tsp of grated orange peel really boosts the orange flavor, too!)</div>
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1 avocado (can sub 1 1/2 bananas if preferred)</div>
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1 small handful kale/spinach/dark green leafy </div>
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(optional - it's going to be a very pale green anyway b/c of the avocado, so omitting it won't take away the green; leaving a dark green leafy in would only be for nutritional purposes -it doesn't affect the taste at all).</div>
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2 cups ice</div>
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blend and enjoy! you can make this thicker by adding more avocado, if desired. i haven't tried new flavors yet because we are still so excited to have some familiar old favorites again, but i am sure you could switch out the fruit or extract and make a strawberry/pomegranate/elderberry/blueberry/whatever- you- like- one, too! </div>
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<br />jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com0tag:blogger.com,1999:blog-2681304994711387294.post-81145686166289766352013-03-26T05:47:00.000-07:002013-03-26T11:05:24.291-07:00sweet weanling<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRQXizjqrmKJL6RiqyENjgMksmWWt6wzqEeodpkPHXGOakjO3BJXqzOj0WpQsbvvGijx5ZNojdP4ngSHkegOxCCvwPRqUMuM7irNScKy71g8eMPLmZu08rJwzfW76DOE3UEADNShUP_8wF/s1600/IMG_7851.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRQXizjqrmKJL6RiqyENjgMksmWWt6wzqEeodpkPHXGOakjO3BJXqzOj0WpQsbvvGijx5ZNojdP4ngSHkegOxCCvwPRqUMuM7irNScKy71g8eMPLmZu08rJwzfW76DOE3UEADNShUP_8wF/s320/IMG_7851.jpg" width="320" /></a></div>
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<span style="background-color: white; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">i gave in this morning. </span><br />
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<span style="background-color: white; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">an hour before the alarm was due to go off, i slinked from my bed and stole 'lou from his, tiptoeing with his sleeping form like a thief in the night. </span><br />
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<span style="background-color: white; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">i mashed him up against me, head tucked under my chin, his legs curled up and tucked into my belly with a toehold secured at the tops of my thighs. </span><br />
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<span style="background-color: white;"><span style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">i stroked his back, i squeezed his palm-sized babycakes, i snuffled hi</span><span class="text_exposed_show" style="display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">s sunshine-and puppy-dog hair.<br /><br />i curled his mini-palm over my lips and put a secret kiss there to get him through his day, my mouth fitting perfectly into his little hand.<br /><br />i watched him sigh, silken lashes fluttering against his porcelain cheek. he dreamt of nursing, lips puckered in a kissy-pout, working his dream-milk out in a rhythmic suckle that matched the beating of my heart - slow and languid; utterly content.<br /><br />i nibbled his little banana chip ear and whispered,<br />"what are you dreaming about?"<br />without so much as fluttering his lashes, he whispered back huskily, </span></span><br />
<span class="text_exposed_show" style="background-color: white; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">"milkmumma" </span><br />
<span class="text_exposed_show" style="background-color: white; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">as if they were one and the same.<br /><br />just as i was drifting off, he pulled me back with his lispy little sleep-whisper: </span><br />
<span class="text_exposed_show" style="background-color: white; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">"you can just steal me today, tomorrow i have to be big again."<br /><br />my last sweet weanling, how can 5 1/2 years of nursing suddenly feel like the blink of an eye when it's done?</span>jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com2tag:blogger.com,1999:blog-2681304994711387294.post-19726932379166320182012-10-26T11:35:00.003-07:002012-10-27T08:13:49.373-07:00the beginning of the end<div class="separator" style="clear: both; text-align: center;">
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<span class="userContent">here we go - the beginning of the end. </span></div>
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<span class="userContent"><br />'lou has been nursing once every day or every other day for weeks now. he just went 3 days w/out asking and then wanted to nurse tonight. for the 1st time, he told me he can't get any milk.<br /><br />he's 5 yrs and 24 days. after 12 3/4 years of non-stop breastfeeding, i'm almost done. if you spaced out how many years each kid nursed for consecutively instead of con</span>currently (due to tandem and triandem nursing), i normal- fed my small children 23 1/2 years of human milk.<br />
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<span class="userContent">out of 5 kids, my youngest weaner was 3.5 and my oldest was 5 yrs and 7 mos.</span><br />
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<span class="userContent">it was hard. it was uncomfortable. it was not always approved of or understood. but it was my duty and privilege to provide for my babies and i can look at the end of the road with fierce pride that i did it for as long as they needed it. i will never ever regret not giving them their best, most essentially necessary start in life.</span><br />
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<span class="userContent">i especially love knowing they nursed to an age that they will always remember it. i hope it is one of their most enduring memories of me all of their lives. never were we all as in sync, bonded, content and still enough to look into each other's souls as when they were nursing.</span><br />
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tandem nursing jovie -5 and 'lou - 3 1/2</div>
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'lou, 4</div>
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tandem nursing jovie, 2 1/2 & jonah, 3 3/4 while pregnant with 'lou. they always held hands. :-)</div>
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nursing 'lou in his hospital bed in denver at 4 3/4.</div>
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little lactation consultant in the making - lilmama (22 mos) gives up her own booby to help make sure new baby 'lou latches on and nurses well right after his home breech birth. one of my fave nursing photos ever. </div>
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professional photo by <a href="http://www.andreamckenziephotography.com/">www.andreamckenziephotography.com</a></div>
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tandemstacking jonah, 3 and jovie, 18 months. </div>
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biggest one goes on the bottom!</div>
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1st time ever tandem nursing - almost 13 years ago! jake, 17 mos and bo, about 2 hours.</div>
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jovie held 'lou's hand while tandem nursing the same way jonah use to hold hers before he weaned.</div>
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tandem nursing a preschooler and toddler in public "discreetly" - this is what it looks like.</div>
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nothing else helped reduce sibling rivalry and promote bonding and contentment with more than one child at once better than nursing multiples. best parenting and health tool ever invented, bar none! </div>
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one of the last photos of my last child nursing. 'lou, 5.</div>
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like climbing mt kilamanjaro, but he wasn't about to give up!</div>
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professional photo by <a href="http://www.andreamckenziephotography.com/">www.andreamckenziephotography.com</a></div>
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putting two and two together...'lou, 10 minutes old. </div>
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professional photo by <a href="http://www.andreamckenziephotography.com/">www.andreamckenziephotography.com</a></div>
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an experienced breastfeeding dad teaching his new son how to latch. </div>
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professional photo by <a href="http://www.andreamckenziephotography.com/">www.andreamckenziephotography.com</a></div>
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tandemstacking newborn bo and 18 month old jake.</div>
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3 yr old nursing bo helping to induce labor after the spontaneous rupture of jonah's membranes at 37 weeks pregnant. professional photo by <a href="http://www.blog.newlifephoto.net/">New Life Photography » Photos by Lesley Mason</a></div>
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5 kids at LAX, baby is hungry and w are rushing to meet planes and buses...no problem! pop him in the mei tai carrier and he nursed until he fell asleep, through all the frantic hustle and bustle.</div>
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she knows how to feed her babies the basics to get an optimal start in their dolly lives!</div>
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a boob's eye view of tandem stacking! i love how they always hold hands or rub each other's heads when tandem nursing. jovie and 'lou, about 2 and 4 here.</div>
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thousand of people, crowded, hot lines, standing and walking for 8 hours, but he never so much as whimpered or complained! 'lou's day at disney at 11 months old. </div>
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attending the global nurse-in at facebook offices at our local one in michigan. i nursed 4 year old 'lou while jovie nursed her own baby shortly after just weaning her herself at 5 1/2.</div>
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4 yo compliments to the chef. :-)</div>
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nursing #1 while 8 months pregnant with #2. bo was born a few days after this picture was taken. </div>
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jake was 17 months old here.</div>
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jovie's 1st time ever nursing at about 15 minutes old after her home water birth. </div>
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professional photo by <a href="http://www.blog.newlifephoto.net/">New Life Photography » Photos by Lesley Mason</a></div>
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one of jovie's last times nursing, at 5 1/2 years, alongside her baby brother at almost 3 1/2 years </div>
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(as he rubs her hair affectionately)</div>
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another devout lactivisto, giving up his own breast to make sure the justborn baby learns how to latch and nurse well first. jonah, 15 months and jovie, 30 minutes old. </div>
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professional photo by <a href="http://www.blog.newlifephoto.net/">New Life Photography » Photos by Lesley Mason</a></div>
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what triandem nursing looks like. i needed a ticket dispenser to hand out tickets for the oldest to wait in line! newborn, 15 month old and 4 year old, waiting his turn as he pets, snuggles and smells the new baby. </div>
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jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com9tag:blogger.com,1999:blog-2681304994711387294.post-28076740276154416892012-08-31T23:24:00.001-07:002012-10-04T19:36:14.391-07:00Our Peanut Free School JourneyIn December of 2010, we began the process of asking our elementary school to go peanut free for our anaphylactic-allergic daughter in anticipation of her starting there the following year.<br />
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This is the open letter I wrote to our community in anticipation of the controversy that might ensue:<br />
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<a href="http://greenandbitchy.blogspot.com/2011/04/open-letter-about-our-school-going.html">Green and Bitchy: open letter about our school going peanut free</a><br />
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The process took 9 months in total, but the school was officially peanut free - or "peanut-restricted", as they prefer to be called - by her first day of Kindergarten in September, 2011.</div>
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I've waited until we made it through the entire school year safely before blogging our story. There are so many different schools of thought on how safe you can really make a school for children like my daughter. I know perfectly well there's really no such thing as any guaranteed "peanut free" environment where other people can come and go. But I also know that I can't seal her up in a plastic bubble and she deserves the ability to start finding her way in the world in an environment that at least gives her a fighting chance. </div>
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I don't plan to ask that her middle school, her high school, her college or her job someday all go peanut free for her. But right now, when she's little and forgets to keep her fingers out of her mouth, or her nose, or her eyes, right now - it's vital that she have a place where peanut butter isn't, in case she forgets these simple frontline precautions to keeping herself safe. </div>
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Even more reason my family in particular is overjoyed and relieved to have a peanut free school is the fact that we now have THREE children with peanut AND tree nut allergies -and all three are in elementary school together for the next 3 years. </div>
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I'm writing this blog about our experience because I'm asked for advice on the process via both the internet and in real life almost daily. Just today at our allergist's office, the Dr. came in and asked if he could give my contact info to another mother about to embark on the same process with her school in a neighboring county. It seems more and more that there is a demand and need for peanut-free schools for our children and I am only too happy to help in any way I can - increasingly so with every death notice I see about another child killed by peanut or tree nut allergies. </div>
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Our journey started with our daughter having her 4th anaphylactic reaction at 5 years old and her allergist saying that she would only be able to attend a peanut free school. I had no idea how to make that happen, so I asked some friends who were teachers and was told I would need to make a 504 plan with the school. This is the federal law that says a school has to accommodate childrens' disabilities. I found the 504 coordinator for our district and began emailing her about Jovie's condition and asking for a meeting. I'm really glad I started the process very early, because I had no idea it would take so long. </div>
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Our school was initially already a peanut and tree nut free classroom facility. The principal we were dealing with at the time felt that this was good enough and balked at being asked to remove and ban peanuts entirely from the building and grounds. It turns out, however, that children were actually permitted to eat peanut products in the classrooms on field trip days or when the cafeteria was already in use for assemblies or events and they ate in the classrooms. Severely peanut allergic children could go eat in the principal's office at these times. I knew this plan would never work for my daughter due to the potential for peanut residue...and besides, if they bent the 'peanut/tree nut free classroom' rule regularly for these reasons, there's really no consistency or accountability. You can't say the classrooms are peanut and tree nut free if people can eat peanuts and tree nuts in them!</div>
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The school district was not satisfied with my daughter's allergist's letter describing her history and the severity of her reactions. I also provided one from her pediatrician, saying the same thing. The 504 coordinator took several weeks to call them both and have lengthy conversations about any other way they could segregate or accommodate my daughter. When the Dr.s held firm that she needs a peanut-free environment, they asked me to come in for a meeting where I once again had to explain her history and symptoms and was subjected to the principal's ignorance and irresponsible view on the subject. She told me, "If my children couldn't have had peanut butter, I think they would have starved to death - I think the way we have the school allergy plan right now is just fine." She asked me disbelievingly, "If she can't go to a school unless it's peanut free, how do you take her anywhere? Do you ask the supermarket to go peanut free for her, too?"</div>
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It was a wait of many more weeks while the school and the district reviewed all of our information. At one point early in the summer, they did tell me they would go peanut free, but then they retracted the commitment and said the decision needed further review. </div>
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Finally they got back to me and asked if I would be willing to provide a 3rd medical opinion by a Dr. of their choosing? I agreed, with the stipulation that they pay for the consultation. They made us an appointment with the head of Allergy and Immunology at Children's Hospital of Detroit. Who not only upheld our original Dr.s recommendation, but added that the classmates of my daughter have to wash their hands upon arriving at school every morning. </div>
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The District once again took many weeks to review this new recommendation and in the meantime, I began doing my own research into the issue and found some excellent sites for support and information on the subject:</div>
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<a href="https://www.facebook.com/pages/504-Plan-Severe-Allergies-and-Anaphylaxis/197650320295315">504 Plan Severe Allergies and Anaphylaxis (73)</a></div>
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<a href="http://www.greatschools.org/LD/school-learning/section-504.gs?content=868">A parent's guide to Section 504 in public schools - Special education and IEPs | GreatSchools</a></div>
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<a href="http://www.foodallergyadvocate.com/Section504IDEA.htm">Education & Advocacy Solutions, LLC</a></div>
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<a href="http://www.kidswithfoodallergies.org/resourcespre.php?id=41&title=School_planning_key_for_allergic_kids">School planning key for allergic kids</a></div>
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<a href="http://www.mpas.org/WhoWeAre.asp">Michigan Protection and Advocacy Service, Inc.</a></div>
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<a href="http://www.peanutallergy.com/statistics-and-facts.html">Peanut Allergy Statistics</a></div>
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<a href="http://www.medicinenet.com/script/main/art.asp?articlekey=15618">Peanut Allergy...The Shocking Facts - Allergies: Allergy Symptoms, Treatment, and Medications on MedicineNet.com</a></div>
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<a href="http://www.skepticnorth.com/2010/06/allergic-to-risk-analysis/">Allergic to Risk Analysis « Canada « Skeptic North</a></div>
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<a href="http://www.omninerd.com/articles/Peanut_Wars_Inconvenience_vs_Death">Peanut Wars: Inconvenience vs. Death - OmniNerd</a></div>
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<a href="http://www.netwellness.org/healthtopics/ch/peanut1.cfm">Peanut Allergy in the School Environment: Myths and Facts: Part 1 of a 2-Part Series</a></div>
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<a href="http://nonutsmomsgroup.weebly.com/1/post/2012/02/remembering-those-we-have-lost-to-food-allergies.html">Remembering Those We Have Lost To Food Allergies - No Nuts Moms Group</a></div>
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As I waited to hear the school's decision, I contacted the <a href="http://www.mpas.org/WhoWeAre.asp">Michigan Protection and Advocacy Service, Inc.</a> and learned that we would be provided free legal representation should the school reject the three medical recommendations for our child's disability. I also learned that according to Michigan discrimination laws, offering to segregate a child with food allergies as a form of accommodation against the parents' preferences is actually a prosecutable form of discrimination against a person with a disability, but if the parents request this form of accommodation themselves, it is perfectly legal.<br />
(We do have such a table at our school - it currently serves as a safe zone for tree nut allergic kids, in case other students bring in almond butter or other tree nuts, which are still allowed in our lunch room and grounds - just not the classrooms).<br />
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By the week before school was due to start, the district contacted us to let us know that they would be going peanut restricted for the entire building, field trips and outings and school grounds. We came in and drafted a 504 plan which all parties involved agreed to. Jovie's teacher, principal, a school nurse from the high school and the 504 coordinator were present, with the Superintendent having previously signed off on it. </div>
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A letter was sent out to parents days before school began, informing them of the new rule. The school issued a statement when the story was aired in the local media saying that they felt going peanut free was the safest policy for everyone at our school and that we have several students with peanut allergies. The principal hosted a question and answer session for over a week on our school's PTA page on FaceBook to answer questions and concerns that parents had about the new rule. Our PTA set up an allergy awareness table at our first PTA meeting of the new year, and offered samples of peanut butter alternatives like sun butter for parents to try. Our food allergy committee volunteers donated their time to put up the new peanut free signs around the building.</div>
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A letter went home with the "fun" suggestion that parents offer their children their favorite peanut-containing snacks in the morning (making me profoundly grateful for the added requirement of hand-washing before class by my daughter's classmates) before school and send them to school with their cereal to eat at lunchtime instead.</div>
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We also got a new principal during this time and I have to say he was a breath of fresh air.</div>
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His empathy and acceptance of what needed to be done to keep not only my daughter but almost a dozen other peanut and tree nut allergy students safe was reaffirming after the attitude of our previous principal. I watched the first week of school as he patrolled the halls and lunchroom, reminding and asking students about their snacks and lunches. He would bring them into the office if they had peanut products, ask them to throw them in a specially designated trash receptacle with a lid and then call their parents to bring replacement items or provide one from the school and send a note home. </div>
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Per our 504 plan, the staff were trained in the use of Epi-Pens. </div>
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A plan was devised whereby substitute teachers report to the secretary for Epi-Pen training before they teach class.</div>
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We wrote an emergency anaphylaxis plan describing Jovie's typical pattern of impending anaphylaxis and how it should be treated and a copy was distributed to every teacher in the building and kept on file in the office. I made kits containing her Benadryl and Epi-Pens for the office, her classroom and her backpack. </div>
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As stipulated per Dr.s orders in her 504 plan, she has also self-carried her epi-pen for her entire year of kindergarten.<br />
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Since just before she was four, she's never left home without wearing one of her special purses or fanny packs for her epipen and benadryl.<br />
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During the class celebrations and parties, the principal was everywhere, patrolling and checking the treats.</div>
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For Halloween, we came up with the idea of putting a big plastic bin with a lid just off campus, at the fire station behind our school. There we asked parents to deposit any peanut-containing candy they wished to donate. </div>
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There were a couple of missteps in our carefully laid plans, but I don't think it was realistic to expect none during our first year of transition. A teacher made the oversight of bringing in an assortment of cookies for Teacher Appreciation week in May and it contained several peanut butter cookies. The oversight was caught quickly and the cookies disposed of, never having left the staff lounge. At the end of the year picnic in a local park, a parent brought baklava encrusted with tree nuts.</div>
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It was not removed or disposed of, reinforcing for me that my children simply won't be attending any extracurricular activities with food-centered celebrations, a backup plan I had already known I would feel it necessary to implement. </div>
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Now school starts again for 2012 next week. Letters have already come home with reminders about the peanut free school and grounds as well as the peanut AND tree nut free classrooms and outings and field trips. The kindergarten meet and greet was this past week and I have another kindergartner starting this year, also with peanut and tree nut allergy - though he has not had an anaphylactic reaction (never having been exposed to peanuts or tree nuts). I brought all of my children to the meet and greet and saw no less than 2 peanut products in the group - a chocolate covered bar of peanuts and a peanut butter and jelly sandwich. </div>
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I'm not sure how these oversights occurred when letters went out to all families at our school, but the principal rectified both situations immediately. Letters will again be going out the first week of school and we will put up a reminder on the school's marquee, out in front near the main street. </div>
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I think we also need signs by all of the gates onto our playground -a goal I hope to explore this year. </div>
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It's not a perfect solution, I know they aren't 100% safe from ever being exposed to a peanut there, but I think it's a great compromise. The school is doing its job the best it can, and if I'm doing mine and reminding my kids constantly that they never eat anything that didn't come from home, that they wash hands frequently, that they report any symptoms to an adult promptly - then we might just come out of this with everyone a little safer, more tolerant and understanding about food allergies in today's world.<br />
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And more importantly, we didn't lock them up and "keep them home" to homeschool them. Which is the version of homeschooling most people who recommend it to us peanut allergy parents seem to envision - when in actuality, my homeschooling friends and clients still have to deal with this issue in their many outings to public venues with homeschool groups, co-ops and sports activities! No parent of a child with life-threatening food allergy wants to emotionally cripple their child by denying them the chance to learn how to navigate out in the real world with their condition. Physically disabled children get wheelchairs and ramps, our kids need peanut bans until they are independent and secure enough to manage environments without them. </div>
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All we ever wanted was a chance for them to get the same thing other kids get: to go and learn and socialize and achieve without having to die or be seriously harmed while they do. </div>
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Aside from my gratitude and relief that our district has provided us with that chance, I am thrilled and proud that our school is peanut free.<br />
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There couldn't be a better location for a food allergy child to attend school, if you ask me. Right next door, on the corner of the street our school is on, is one of the top allergists in the state. In fact, he is the Director of Pediatric Allergy and Immunology at Beaumont Hospital as well as the Director of Pediatric Pulmonology.</div>
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<a href="http://allergyasthmaoffice.com/5201.html">Devang Doshi, MD</a></div>
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Sitting right smack behind our rear parking lot is one of Royal Oak's fire stations.</div>
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It is a straight line from their back door to the kindergarten room door that would take less than 2 minutes to trot on foot.</div>
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About half a mile down 13 mile road (that our school is on) is Beaumont Hospital. Literally about 4 minutes for an ambulance to cover. </div>
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Across the street from the hospital is another one of the top allergy centers in the area.</div>
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<a href="http://www.allergyctr.com/">Dr. Abdul Bahrainwala</a></div>
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I simply couldn't think of a more perfect location for an allergy aware and peanut restricted school, frankly - and I'm very proud of ours for getting current and putting student safety first. </div>
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<span class="Apple-style-span" style="color: red;">(Updated 9/6/12 - The peanut free reminder was up before the 1st week of school was out and the principal informs me that we are on track to get signs on our gates soon. :-)</span></div>
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<span class="Apple-style-span" style="color: red;">Updated 10/4/12: We have now placed a peanut-specific trash can in the lunch room for when peanut products are occasionally overlooked and brought from home. We also came up with a note to send home in the child's lunchbox once the item is disposed of in the trash can, alerting parents to our peanut-restricted status and the breach of policy. This is a good step toward keeping peanut items out of our school's main office, where they were previously brought.</span></div>
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jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com4tag:blogger.com,1999:blog-2681304994711387294.post-58322901771377785442012-08-11T17:26:00.002-07:002012-08-11T23:13:45.470-07:0010 days after NJH ~ updateAs soon as we flew home from Denver, I had to hit the ground running. Dr.s appointments the following day, 2 kids with a joint birthday party we'd delayed until my return and 'Lou's new routine to get the entire household adjusted to.<br />
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The twice daily baths are a huge hit, as we were almost exclusively a shower-only family before. 'Lou has no less than 2 or 3 siblings volunteering for each bath - we are finally getting some use out of the giant garden tub we put in when we built our addition but never use!<br />
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I've managed to make it part of our daily routine that we start our day with his morning soak before anything else. He still sleeps in dry wraps over his hands and feet,</div>
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and I'm only applying the lightest layer of Protopic in the areas that were the hardest to clear up - even though they are beautifully clear now. </div>
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The rest of his skin is being maintained entirely by the plain warm water soaks and then sealing it in with a moisturizer - as well as an extra lotioning with vanicream in the middle of the day, no matter what, no matter where. He has never ever looked so perfect. We want to change his name to Pinocchio, because he is finally a real boy instead of a sandpaper mache version.</div>
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No itching, no burning, no scaling, no flaking, no cracking, no raw spots, no infections. It feels like winning the lottery to think that I can possibly keep him from EVER being in that living hell again. </div>
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Not to say that he doesn't still have some unusual issues.</div>
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I took him to his pediatrician this past week and for some reason, he started breaking out in hives as soon as I got his clothes off in her office. </div>
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His own version of flattened hives were popping up on his arms and belly and I have no idea what was causing it. He got itchy and irritable, but I knew that as soon as we got him out of there, it would clear up - and it did. </div>
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It did elicit a discouraged phone call from me to our PA, Elizabeth, at NJH - who reassured me that this is normal for kids with his skin diagnosis. I have to reprogram myself not to worry about every single reaction and hive and outbreak. I used to feel like it was my mission to trace and track down every possible culprit and try to eliminate it from his world. </div>
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Now that I know the reactions are just a matter of his skin lacking a barrier, I understand them. They are just getting into his skin and system and causing aggravation locally - but it doesn't mean he is going to have a dangerous or anaphylactic reaction. Instead of focusing on everything outside of his skin that I can try to control, I only need to focus on keeping his skin as protected and healthy as possible and eventually all those outside things will stop causing so many of these reactions. </div>
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We are also all still half-expecting to get a delayed result of a genetic disorder that took a little longer to discover - as his local Dr.s and I keep saying, "But wait, if his filaggrin loss is acquired, how was he born with hives and swollen eyes and reacting to dairy through breastmilk?" I am keeping the September genetic results timeline from NJH in the back of my mind. </div>
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His foreskin issue has improved 70% since returning home -and I am hoping once the treatment cream is discontinued, it will stay this way. We are following up with a local pediatric urologist for another opinion and prognosis this month, as well. </div>
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Only a day after Elizabeth at NJH talked me down from the hivey pediatric visit, he came down with green snot and a terrible earache. It suddenly clicked for me that the hive outbreak and extra sensitivity was probably because he had a slight cold bug! What a change - only hives and itching from a virus that were gone 10 minutes after getting into our vehicle! </div>
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Always before, a virus or bug in the house resulted in a huge eczema outbreak and prolonged setback in reaching baseline for his skin. I am not allowing his skin to break out like that anymore, because I am keeping his skin ultra hydrated and sealed with emollients and moisturizers and it is making all the difference in the world. With the added advantage of the nasal rinsing I have learned (along with my normal protocol of chiropractics for ear complaints and extra elderberry), his ear hurt and he felt warm/feverish for 16 hours and then we had it literally flushed right out of his system. And his skin never flared with his illness - beyond those few hives. A mumma could get used to this!!</div>
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We did try giving him his first ever Sunbutter and it provoked extremely dark purple, itchy rings around his eyes with tiny, hive-ish bumps.</div>
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Still not sure how to handle these types of food reactions on my own, I've shelved the sunflower products for him until we can check with one of his local allergists, Dr. Doshi, to see what he advises.</div>
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<a href="http://allergyasthmaoffice.com/5201.html">Devang Doshi, MD</a></div>
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He is very familiar with the philosophy at NJH and is on board with 'Lou's care plan. We plan to do a food challenge for wheat one more time in his office on 8/27 -and then possibly more for sesame and salmon. </div>
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We can't wait for our next appointment with his other local allergist, Dr. Bahrainwala.</div>
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<a href="http://www.allergyctr.com/">allergy/bahrainwala</a></div>
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Dr. B has been seeing 'Lou since infancy and he is going to be just as excited as we are at 'Lou's perfect and much more functional skin for the first time in years.</div>
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I remember my trepidation about fitting his home care requirements into our busy household while still at NJH. I recall expressing my fears to the clinical social worker/therapist -Jennifer- while there.</div>
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<a href="http://www.nationaljewish.org/search-results/?term=jennifer+darr">Jennifer Darr - National Jewish Health</a></div>
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I said to her, "I am just trying to picture getting 3 soak & seals a day in and lotioning him every time he itches with a house full of 4 other kids, 2 giant dogs and everyone is breaking their bones constantly!"</div>
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She looked at me skeptically and said, "But what are the odds that someone is going to break a bone while he is in the tub?"</div>
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And I thought, "This lady obviously does not have 5 kids." </div>
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So this particular part of the update is just for you, Jennifer - in hopes that you are still checking in here now and then: Last Sunday as 'Lou was getting his 8:30 pm bath, our older boys were walking their dogs when I got a call that one of the dogs had dashed in the street and been hit by a car. I pulled him from the tub, wrapped him in his terrycloth robe, buckled him into his carseat, pulled the robe open, handed him the tube of vanicream in my purse and told him to put it all over himself while I drove to the scene of the accident.</div>
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His carseat will never be the same, but I stuck to the plan as closely as possible!! Incidentally, the dog needs a hip replacement now - which is exactly how our luck was going before I flew to Denver, so now I feel like I'm truly back home. My only regret is that you did not offer a margarita therapy program that I could have utilized before jumping back into my life here. Maybe you can work on implementing this before we might make any return trips. </div>
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I hope to write updates regularly, to report on 'Lou's progress. We are on pins and needles to see if he can really handle going to school. The principal at our school should be contacting me shortly to see if we need to do anything special to accommodate 'Lou's School Care Plan from NJH. 'Lou just picked out his first ever backpack</div>
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and got the confirmation letter that he will be getting the same teacher his brother and sister had. He is so excited he can hardly sit still. </div>
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Now I'm off to watch a family movie with all my kids, including my little guy who can laugh and smile and sit still and focus on something for the first time in longer than I can remember. </div>
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~Just finished watching the movie with the kids and had to add another exciting detail to the update: 'Lou fell asleep in his "magic jammies" and pulled a heavy blanket on top of himself. I just went to carry him to bed and noticed that his face was shimmery and sparkling. Now, you might assume he was an "Eclipse" - version vampire what with the pallid skin, propensity to stay up all night and sleep all day, elegantly thin frame and dark rings around his eyes, but no - it was sweat! He is sweating for the first time ever!! We have never seen this child sweat, not even on the muggiest, steamiest, swelteringist of humid Michigan days. And if he had, it no doubt would have burned like acid on his cracked and ravaged skin. Now he's sweating away while he sleeps like a normal, healthy, hydrated kid whose skin is retaining moisture. Like I said, Pinocchio. </div>
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<br />jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com7tag:blogger.com,1999:blog-2681304994711387294.post-57041086985356709052012-08-01T22:59:00.000-07:002012-08-05T22:15:37.649-07:00National Jewish/Denver - Day 10The end of Day 9 finished up with 'Lou screaming and howling as I applied his vanicream. No redness or irritation at all, just burning like fire on the back of his neck and small of his back with the application of the cream we've been using with no issues almost this entire time.<br />
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I almost got back on the ipad and blogged an addendum entry - but I'll tell the truth, it gave me such a pessimistic and negative attitude to see this hated symptom back right before we are due to leave, that I thought it would be best to wait and see if my perspective changed with a good night's sleep. The only reason I could imagine for the burning sensation to be back in his skin was that I had forgotten his terry robe at the hotel and wiped him with a hospital towel for his morning soak and seal ... OR the wheat we'd bombarded him with all day.<br />
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But the thinking about true food allergy reactions here tells me that this would not be a true food allergy reaction, so I shook the thought off (even though my food diary shows me that the entire time we trialed wheat over this last spring, burning skin was one of his worst main symptoms).<br />
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We celebrated after dinner by splitting a wheat-laden rhubarb and berry tart from Watercourse.<br />
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For the first time in Denver since getting his skin so cleared up, 'Lou woke at 3am, scratching and digging at his hands and arms through his covered jammies.<br />
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Day 10 started with 'Lou's morning soak and seal in the hospital and revealed a reddened back of his neck, small of his back and some new, harmless looking bumps scattered across his back. Given the issues with our hotel room, none of us were very concerned.<br />
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I got him dressed and we had breakfast: his normal daily corn flakes, -2 bowls - a bowl of cream of wheat and his first ever bagel!!<br />
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With this being our very last day, we also wanted to try and get his very last food trial items in: salmon, kidney beans and sesame - so we gave him his first dose of salmon. He was already itchier than usual this morning and Nurse Sandy and I were constantly redirecting his scratching, but after breakfast and the salmon, it intensified.<br />
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During a skin check, Sandy noted a red flush creeping up the small of his back and halted the 2nd dose of salmon we'd been getting ready to administer. We kept a close eye on him and as the red patchiness faded from his back, he got welty red marks up the back and side of his neck. Next they crept up to his cheeks, this time with defined hives.<br />
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Of course at 1st glance it looked like a salmon reaction, but all of my instincts were saying it was the wheat. It was such a tiny amount of salmon for such an all-over-body reaction, but I expected resistance to the theory of a cumulative delayed reaction to wheat from the staff as he's passed 2 of the 4 wheat challenges and this just didn't fit their mold for true food allergy reactions. Much to my surprise, the PA (Naomi) and Nurse Sandy readily agreed that they had a feeling it was the wheat he'd eaten right before the challenge, too.<br />
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Even as this deflated my hopes for a perfect food-trial record, it really increased my respect for the program and staff here as I'd expected them to stick to their guns and claim this couldn't be a "real" reaction as it didn't have a history of consistency during their food challenges. I did wonder if that might be due to my agreeability in using mild steroids and protopic to squelch reactions in order to keep his skin clear enough to get all the challenges done in the timeframe we had, but I prefer to think they were being as openminded to my theories as I have been to theirs.<br />
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Naomi was concerned about the facial hives and wanted to administer benadryl, but I asked if we could wait another 10 minutes or so and see if they got better or worse. The one thing about 'Lou's reactions is that if you remove the irritant/ allergen, he clears up really fast, except with his previous corn reactions, those took 2-3 weeks. None of his reactions has ever appeared to be anaphylactic, so I wasn't too worried this time. Sure enough, in 15 minutes he was running around, terrorizing the patients and staff equally with no more red patches or hives.<br />
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At any rate, we did give it some time and retry the salmon to see if we could rule that out as the cause, and while he didn't get any actual hives or welts, his skin was still so patchy and red that it was hard to tell if it got worse after the 2nd does of salmon, so for now they decided to keep restricting both salmon and wheat. He was also too reactive and flared up to try kidney beans or sesame.<br />
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So, his final restrictions are: dairy, egg, wheat, peanuts, tree nuts, sesame and salmon. I can trial salmon, sesame and kidney beans with a local Dr. if I choose to.<br />
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Even as I'm actually sort of relieved he reacted to wheat because it fits with what I have observed and thought was going on with him at home (so i'm not crazy or wrong about it *all*), I'm a bit more confused about the theory being taught here. I was told true food reactions were consistent, happened w/in 2 hours of exposure/ingestion and happened every time. So i'm not sure how they categorized the overnight discomfort all those hours after ingestion along with the delayed rash, the 1st 2 failed challenges where one happened almost exactly 2 hours after he ate it and both were more of a rash than hives, and the burning skin. Maybe they would just call those things a sensitivity to wheat? But they led pretty rapidly to a potentially serious reaction with facial hives, so I'm not sure that I care whether they would have classified it as a sensitivity or true allergic response, it's not something I would have kept giving my child outside of a medically supervised environment. Which the staff here and I are in agreement on, so I guess what we call the reaction doesn't really matter - but I still like to try and fit things into their proper niches when learning new concepts, pigeonholer that I am.<br />
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Which begs the question, if i think he's having problems with any of the other foods, will i re-eliminate those, too? And *will* he start having problems when we get out of the controlled environment here?<br />
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What will he look like when the food trials are over and we're not using Protopic to subdue all the small outbreaks from the hotel room and food trials? I am eager to put to the test all that I've learned, and I see now that 'Lou is still not quite fitting the mold here, either. I do wonder if our long-term breastfeeding might be delaying and lessening some of his reactions - since breastfeeding is supposed to help prevent allergies in the 1st place.<br />
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I sure wish there were a study we could refer to!<br />
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Parents group was canceled today because there weren't enough parents to attend, so it was a nice chance to just hang out and socialize with the other parents over lunch. There was a terrifying episode of choking by a child and favorite hospital buddy of 'Lou's with EE. The grape was heimliched and gagged out in time, but it was a unique peek into what kids and parents living with EE have to deal with on a regular basis.<br />
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Back to what I was saying about the amazingly empathic and emotionally generous children here, would you believe that this little 10 year old boy with EE who choked during lunch time came right to our room when he was recovered to ask if 'Lou was okay and to apologize for scaring him?! He also asked 'Lou to use his choking as an example to always be so careful with eating his food! 'Lou replied, "Okay, but please never do it again - are you really okay?"<br />
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Since this was one of the longest-term diagnoses hanging over 'Lou's head, I have had the ambivalent experience of being so glad they don't think he has it, even as my heart leaps around like a trapped animal in a cage over these kids' panic and pain, because that so easily could have been (and potentially still could be someday) us.<br />
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Truly, what a wonderful idea to include a psychologist as an integral part of the program!<br />
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<a href="http://www.nationaljewish.org/search-results/?term=jennifer+darr">Jennifer Darr - National Jewish Health</a></div>
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the grief and fear some of the moms expressed upon receiving this diagnosis had me welling up right along with them.<br />
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On the flip side of the coin, a beautiful little girl exactly 'Lou's age came in a few days ago. She had been diagnosed with EE without a biopsy and was down to nothing but rice and a supplemental formula for I-don't-know-how-long.<br />
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Just like us, her family had eliminated more and more foods over time due to allergy test results and skin reactions of rashes, eczema and hives. As of today, NJH has reevaluated her and she doesn't have EE, nor does she need to be on such a restricted diet. She's already trialed several fruits back into her diet! This story in particular was a hard one to leave, it was such a joyous thing to see this family receive such a wonderful gift - most of us were basking in the glow of the parents' joy like it was Christmas in August.<br />
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Our last day concluded with our discharge meeting. We were given a written home plan for how to continue caring for 'Lou's skin, including the entire step-down and step-up procedures for when he flares - and when he doesn't. We got written instructions and an outline for how the school will be directed to care for him with this condition. It is easily transferred into a 504 plan, should the school deem that necessary.<br />
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Don was able to conference call in and be part of the meeting to ask his questions. We were both able to ask all of our remaining questions. There to answer them were Dr. Spahn,<br />
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PA-to-Dr.- Leung, Naomi and<br />
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Jennifer Darr, LCSW.<br />
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The biggest of which was: Why was he born literally reacting to dairy and having welty, hivey skin if his problem is just eczema - are people usually born with eczema? Dr. Spahn said they really don't know much about the cause of eczema, but they are learning more every day about how to manage it. And no, people aren't usually born with the symptoms 'Lou was, but it's hard to say exactly what caused them without having all the details back then.<br />
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They did say that 'Lou is at slightly increased risk for developing EE, that if we can get his skin absolutely perfect and keep it that way for about 5 years, there's a small chance he could be around cats and we might be able to have one in our home again, that his terrible skin history alone does not explain his enormous appetite and poor growth, and that there is hope that he will "outgrow" all of this if we can keep up on his skin care plan and keep him in remission long-term.<br />
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I've asked every question I could possibly think of. I've complied and cooperated with every recommendation given (with the exception of seeing a nutritionist/ dietician which A. Our insurance won't help pay for and B. We just don't need) and now I am ready to get home and try this new lifestyle out in the real world!<br />
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I was trying to cram it all into a nutshell for Don and it came out kind of like this: "All along we've thought the food allergies were the central issue and the other problems were satellite concerns around that giant planet of a diagnosis. Now we're being told that his skin disorder is the giant planet and the food allergies and growth and everything else are the satellite issues. Treat the skin disorder and get it under control and all the other issues should improve dramatically or vanish." It goes against everything I've believed for the last almost 5 years, but I am committed to giving it my all before I decide it won't work.<br />
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'Lou is going to miss Nurse Sandy and Sonny the receptionist the most. One of his favorite things was to play peek-a-boo around the partition at Sonny's desk.<br />
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My helpful tip of the day is this: when the nurses show you proper saline rinsing of the sinuses and tell you not to try it without the little salt packets, listen to them. I ran out of the packets this morning and just used the plain distilled water and it felt like someone injected hot magma into the rear hindquarter lobes of my brain.<br />
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And one final helpful tip for the road. Open your mind. What have you got to lose at this point?jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com1tag:blogger.com,1999:blog-2681304994711387294.post-40861882105203258852012-07-30T17:49:00.000-07:002012-08-04T11:55:12.246-07:00National Jewish/Denver - Day 9Today saw 'Lou waking up almost completely cleared up from his breakout last night after the horrible stomach pains in the restaurant.<br />
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He was deemed clear enough for food trials today so we did his 3rd wheat trial, since the 1st two resulted in rashes. To my complete surprise, the 3rd trial produced no reaction! Finding this hard to believe, I requested a 4th trial. After a heaping plate of wheat pasta spaghetti AND wheat toast, 2 hours later, he still had clear skin!! To get back corn AND wheat is just beyond my biggest hopes - it's almost too good to be true.<br />
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Next we trialed lentils, which he loved. No problem with those, either. This means he has passed every food trial we have done. This means he can eat all the things I've been restricting for most of his life, except dairy, egg, sesame, tree nuts and peanuts . Truly, it hasn't really sunk in yet.<br />
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The fact that he got 2 rashes the 1st two times we gave him wheat shows me that his skin is so incredibly reactive and sensitive that even in a hospital setting during a controlled trial, it is very easy to mistakenly assume he is allergic to something he is not. I don't know how feasible it's going to be for his Dr.s in Michigan to do a food trial every time we think he is reacting to a food and also has a test result that shows an allergic response to it. I will have to save this for one of my questions in the final meeting tomorrow!<br />
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We also found out that his caloric intake for one day here was 1,769. The goal for someone with his skin condition is 2,100. The calorie count here did not take into account any of the human milk he gets. We know that the longer a woman lactates, the fatter her milk becomes. I have been breast feeding without interruption for 12 1/2 years straight now. I am certain that my milk supplies a good portion of the remaining 331 calories for him every day. When we are home, I am also certain that he more than reaches 2,100 calories daily as I am able to personally add a lot more fats and oils to his foods than when I am here in Denver.<br />
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On the one hand, the calorie count reassures me that we are on target and meeting the nutritional needs to keep him growing optimally. I haven't done a calorie count for him in over 2 years, so I had no idea what 2,100 calories looks like. Now I know, and I know we've been doing it. So on the other hand - he isn't growing or gaining even with the inflated calories he needs: why? Is this something that should improve as the condition of his skin does? Yet another question for the meeting tomorrow.<br />
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We've already seen an endocrinologist who recommended growth hormone injections for 'Lou's Short Stature/ Failure To Thrive. Dr. Leung here at NJH recommends following up with another endocrinologist for a 2nd opinion and thinks the injections just might be a valid consideration for 'Lou.<br />
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I met Dr. Erwin Gelfand today, who is the head of pediatrics here.<br />
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<a href="http://www.vitals.com/doctors/Dr_Erwin_Gelfand">Vitals.com - Doctor Erwin W Gelfand, MD | Denver, CO</a></div>
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<a href="http://www.nationaljewish.org/about/people-search/detail/?id=112">Erwin W. Gelfand, MD - National Jewish Health</a></div>
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He reassured me that they see results like ours all the time. He encouraged me to stick with the skin healing and protecting routines I am learning here. He invited me to stay in touch and call for advice any time after we leave. He also said that he enjoys and follows my blog entries!<br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">I was able to follow up with our intake coordinator and let her know about one of the issues we've been having with achieving complete and total skin recovery: one of the hotel chains they recommend in their intake packet can not guarantee pet free rooms nor smoke free common areas outside.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjucxp3rHx0GGMduIUJozAPO7iY8gajXXcHt1Wv74mmIiIvSx3facx5m5vYIspWDICsroQJLajTHi2XHyZuIiUeBN2QLJyiGuP5WmUkeHAiZVdrw5aLd1M4U9DmyzT_xKomR1uBcc5q5eME/s1600/IMG_0627.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjucxp3rHx0GGMduIUJozAPO7iY8gajXXcHt1Wv74mmIiIvSx3facx5m5vYIspWDICsroQJLajTHi2XHyZuIiUeBN2QLJyiGuP5WmUkeHAiZVdrw5aLd1M4U9DmyzT_xKomR1uBcc5q5eME/s320/IMG_0627.JPG" width="320" /></a></div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"> Marriott Residence Inns all take in pets (with a deposit) and allow smoking around the pool - a practice which has led to many a rapid fleeing of the scene for us! </span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
I had barely let her know when she informed me that the staff working with 'Lou had already brought this up and a disclaimer and plans to accommodate patients of NJH were already underway between the hospital and the hotel!<br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">Our stay here has been so much better than I expected. We have reaped so many more benefits than I dared hope for. Especially worth treasuring has been watching all of the children together here. Scarred skin, nasal tubes in, constant tics, constant coughs, wheezing, fearful or obsessive about food and reactions, it just didn't matter to them. </span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">They had instant empathy and camaraderie. There was no teasing, no staring, no ostracizing and no making fun. They were open and friendly and curious and more concerned and solicitous of each other's well-being than any group of people I have ever seen. This </span>is going to be one of hardest things to leave behind as I go home to and plan to start 'Lou in school and keep him home from the pizza and ice cream parties that exclude him.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAYPakBsm36ywqAOBVjaNTa9sRo17dLIMhynejcVPaii7lrYneMUDPQDcjldXcd1I_WJX2P_Ek30tWSWRIyZGq-io0t0m_P-l55wZv536cFpewm_zB96C3GBLlWJhI5-xqAblQ8yOPQC94/s1600/IMG_0831.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAYPakBsm36ywqAOBVjaNTa9sRo17dLIMhynejcVPaii7lrYneMUDPQDcjldXcd1I_WJX2P_Ek30tWSWRIyZGq-io0t0m_P-l55wZv536cFpewm_zB96C3GBLlWJhI5-xqAblQ8yOPQC94/s320/IMG_0831.JPG" width="320" /></a></div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">As my thoughts turn toward going home, my helpful tip of the day is to find another, newer patient in the program and donate any extra special foods you bought and didn't use to them. I have a whole case of bottled water we didn't drink most of. If I hadn't found another NJH family in our complex, I would donate it here to the program in the hospital .</span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">I will be sad to leave a lot of this behind, but my heart is stretching and yearning toward my other children more every day.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho8OFQMozvHsVhHR2un_F4psf64Vp1CEHAzx4hOyEbhIOQ-5cQCTV4QCt0ZPzWlHbWCcAutxKpyqB5o1PZclmMICXIRvACad-EYdYc7AZ-CW6SJdp28QOxkA3He0Uoclqew3G8598uZGFn/s1600/DSCF1702.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho8OFQMozvHsVhHR2un_F4psf64Vp1CEHAzx4hOyEbhIOQ-5cQCTV4QCt0ZPzWlHbWCcAutxKpyqB5o1PZclmMICXIRvACad-EYdYc7AZ-CW6SJdp28QOxkA3He0Uoclqew3G8598uZGFn/s320/DSCF1702.JPG" width="320" /></a></div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"> It's felt like something was missing to have our children separated. I also can't wait to try his new skin and diet on at home !!</span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span>jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com1tag:blogger.com,1999:blog-2681304994711387294.post-34932848519560013722012-07-30T11:05:00.001-07:002012-08-03T22:18:22.152-07:00NJH - Days OffThis weekend was practically a blur with my sister and nephew flying in to visit from California.<br />
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We had planned to visit the zoo or children's museum, but my sister got a touch of altitude sickness! Which leads me to the biggest day off helpful tip of all: drink tons And tons of water<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">. All the time!</span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">We did manage to go out to eat (at watercourse - lots of vegan and gluten-free menu items we can tweak to fit our restrictions!) and experienced a hive breakout when I let 'Lou sit in the high chair. Removal from the high chair cleared up the hives. I LOVE the artwork there and 'Lou won over our initially standoffish waiter, Mr. Lucas.</span><br />
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Later, we ate there again for dinner and 'Lou experienced severe abdominal pains after eating a dish made of corn and pinto beans.<br />
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His pain was extreme and his distress genuine, so we packed up our meals and took him in to NJH to have him checked.<br />
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Dr. Fleischer's best guess was gas or cross-contamination as 'Lou has been eating corn daily with no reactions and he passed the pinto bean test with flying colors, as well. He said if the symptoms had included hives or rash, he'd be more likely to suspect a true reaction. He examined 'Lou for a rash and there was no trace of one.<br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">By the time we got back to the hotel, he had one. On his back, belly and back of legs.</span><br />
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"> It didn't appear to be spreading or even itching, so i did his nightly back and moisture routine and took my sister to the airport as planned. </span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
He slept perfectly all night and woke up in the morning only slightly itchy and with the faintest pink areas where the rashes had been.<br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">The hardest thing I am learning is not to assume every rash and reaction is a positive allergic response to the most recent food he's eaten. His skin is so permeable, almost anything in his environment could be contributing. </span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
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<br />jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com0tag:blogger.com,1999:blog-2681304994711387294.post-50965279253907193832012-07-27T19:42:00.001-07:002012-08-04T11:48:29.422-07:00National Jewish/Denver - Day 8Only two hospital days left and for all intents and purposes, I feel like I've maximized all the potential there was in coming here! We just have a few more food items to challenge and one more discharge consultation with the Dr.s.<br />
<br />
The gains we've achieved here have been well worth the visit, the drawbacks have been few.
Today we managed to cram in 3 food challenges and 'Lou passed them all: pinto beans, tuna and navy beans.<br />
<br />
Right at the end of the navy bean challenge, he tripped and fell on the carpet and got one hive on his wrist, but I knew it was a contact reaction. The Dr.s say those will continue until we can replenish the filaggrin in his skin by providing a replacement protective barrier long-term and prevent him from scratching.<br />
<br />
I can't help but wonder how many times I mistook such extreme contact sensitivity for a food reaction. I like to think I kept meticulous food journals, but I 've really seen here what a terrible state his skin was in.
During the intensive 3 -baths -a -day -and -wet -wraps -for -6 -hours -daily phase, I saw his urine output increase to previously unseen levels. Even though he was hardly drinking much water, his skin was sucking up the moisture from the baths and wraps like a dried sponge. He was going pee every 15 minutes and it was as clear as water.<br />
<br />
I also see firsthand that eliminating foods based on positive skin or blood tests was overkill. We really felt we were seeing direct reactions due to how constantly his skin was reacting and flaring, but I see now many of them were inaccurate assumptions. However, taking wheat out a few weeks ago definitely improved his ravaged skin and it definitely caused reactions when trialed here despite it being a lower score on the skin and blood tests and being one that Dr. Fleischer said he highly doubted was a true allergy.<br />
<br />
Egg and dairy are literally off the charts with RAST scores over 100, so the Dr.s won't even consider trying to challenge those and peanut is just high enough for them to consider to be too risky also. Sesame is apparently becoming the new peanut in the world of food allergies, so 'Lou's sesame numbers are concerning enough that they might not want to let us try that one. - But all the beans, lentils and even fish are apparently not a problem when his skin is well-protected.<br />
<br />
Corn was definitely one of his worst and most sensitive problems, but he accidentally ate some pineapple in citric and ascorbic acids a few months ago and we were amazed when he didn't
break out afterward. I wondered then if he could be "growing out" (by which I mean changing how he shows his intolerance) of this allergy - but I was too afraid and conditioned to test it any further at home.<br />
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I especially treasure finding out that our dogs aren't contributing to the problem!<br />
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I value understanding the mechanism of what's been happening with him and I truly believe knowledge is power and I feel very empowered knowing how I can heal his skin. I have a plan in place that could potentially ensure that he never ever has to look or feel as badly as this last year for the rest of his life.<br />
<br />
Any of the times I've felt discouraged or homesick or worried about the treatment plan here, I've usually done a load of laundry around the same time and thrown in one of his beloved long-sleeve over shirts and seen the blood stains on the inside of it, up and down the arms and around the neck and on the back and I've resolved anew that this is the end of the line.<br />
<br />
I give it all I've got here and take everything I can possibly learn from it. I forced myself to open my mind. I tried things I wanted to balk at. I trusted people I had no reason to. And I think it paid off.
I was respected in turn. I was afforded courtesies far beyond the normal scope of a hospitalization. I have made friends with staff here that I plan to stay in touch with long after we leave. I like to think I might have even taught people here a thing or two!<br />
<br />
When I first got here and started to feel myself get defensive and upset and want to cling to my own thoughts on how to treat 'Lou, I had to stop and consciously think, "I've tried it my way for almost 5 years and he's only gotten worse and his diet has gotten more and more restricted. I can let someone else try for 15 days and see if there's any improvements before I decide I won't compromise or change anything."
That was the day I put my Shea butter away and took off his hazel wood and amber necklaces and let them use their vanicream and aquaphor. Which (if you know me) speaks volumes.<br />
<br />
I am excited to think now how many stubborn cases I've worked with myself that might truly benefit from what I've learned. Before I came, we were thinking he wouldn't even be able to start school. Provided what has happened is not just a respite from being removed from Michigan that recurs when we get home and we can keep him this clear, he will be starting school on time!<br />
<br />
People are already asking me if this means I am going to start feeding him more standard American foods now. I know we've just learned how to manage his constant breakouts, but that doesn't mean we've healed or even addressed *why* he's literally been this way since he was born.<br />
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If nobody can prove to me that it is some kind of genetic metabolic or skin disorder, then I have to assume it is an acquired condition. And given what I now know about gut health and how it affects every other system and how truly harmful the standard American diet is, I am left to draw my own conclusions.
I think that his GI tract was damaged or compromised while being formed in utero by my SAD diet of fast food and conveneient meals.<br />
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I think that since I had 5 babies in 7 years and he was #5,<br />
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my own ravaged gut and depleted body was leaking allergens and my own histamines directly into his bloodstream during the pregnancy while I ate my way through the first summer of us having a Del Taco in my city while gestating him.<br />
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So, I believe with all my heart that he is predisposed to further damage from a bad diet. Both from his fragile gut and now his damaged and defenseless skin. This is a person who should never eat fast food or constant allergens. As long as I make the decisions for him, he will not have foods containing HFCS or other GMO-containing ingredients. He will never taste an item from McDonald's. Just because he isn't reacting to soy right now while in a controlled hospital environment without many stressors and with his vitamin D stores chock full because it's summer, does not mean he won't start doing so back in dark and dreary Michigan winters in a crazy house full of lots of kids bringing home constant germs and very little sunshine.<br />
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And even if I keep his skin from ever cracking and getting really bad again, I wonder if he can still become allergic to allergens very easily through his damaged gut by overexposing himself to them.<br />
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So, we won't have to pay a fortune for compounded meds anymore, yay! If I'm really in a pinch and buying the kids snacks from whole foods on the way to the pool, now he can have something with citric acid or maltodextrin or soy, woohoo! But this isn't going to change my philosophy or views on the Standard American Diet and how GMO's are harming
our children.<br />
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It's still completely unacceptable to me that he is allergic to dairy, egg, wheat, tree nuts and peanuts so severely with no family history and no genetic disorder to explain it. Not to mention Jovie's anaphylactic peanut allergy and Jonah's soy and peanut allergies.
I have been mingling with the other families here for almost 2 weeks now and can't believe the number of older children and teens who are back here for the 3rd and 4th times.<br />
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The one thing I keep hearing over and over is the goal of eating McDonald's, or pizza, or Sonic or ice cream or whatever harmful mainstream crap food you want to substitute. I can't believe they aren't putting it together that they are breaking down any true gut healing or even forced healing from medications that they achieved here, by flooding their child's system with chemicals, toxins and allergens. No wonder they have to keep coming back.<br />
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I don't want for my son to have to come back, much as I respect and admire the staff here. The most heartbreaking are the mothers bringing babies in. Time without fail, they have been told breast feeding is harming the baby. They compare and discuss brands of formula and list symptoms from them as long as their arms, all the while regarding the healing milk from their own bodies as poison. It breaks my heart.<br />
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Another lesson I hope to learn in advance is the emotional toll these issues take on their children. The little ones are fearful and combative. They resist baths, scream in fear of the water burning, are afraid of the creams and ointments, are terrified of the dr.s and too traumatized to cooperate with eating the food challenge foods. They have regressive behaviors and the parents tend to feel harried, frazzled, stressed out, fearful, helpless and obliged to be over permissive.<br />
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The older kids tend to have emotional issues: obsessive-compulsive behaviors, nervous tics, panic attacks, depression, sleep issues, peer issues, grade issues.
Being a mom who practices attachment parenting and especially normal-term breast feeding gives me a unique perspective.
In the "coping" classes, they teach us that our children often scratch or complain of allergic symptoms to control and manipulate us. The dr.s and nurses correct 'Lou sternly when he scratches, as if he were misbehaving rather than experiencing a symptom.<br />
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It was hard for me to speak up as the only person with this point of view, but I had to say at one point, "Do you really think that a child still being breasted at almost 5 years needs emotional attention so much he has to fake symptoms for it?"<br />
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So yeah, like most other places in this country, the philosophies here are not always AP- compatible. I chose to take what works for us like Bilbo Baggins with the Ring and run with it.
I only really shared in one group in an impassioned and spontaneous reply about how we handle the rude comments of others about our children's conditions.<br />
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For me, I was restrained and politically correct. For one other mother in the group, I guess not so much. She looked at me chidingly from the lofty heights of her 14 years of repeat visits to this hospital for her child and said, "You sound angry. Anger is poison, you know."<br />
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I regarded her with genuine surprise. I truly delved into myself and tried to honestly examine the emotions I'd been trying to express. Finally I said simply, "I'm not angry. I'm determined."jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com0tag:blogger.com,1999:blog-2681304994711387294.post-61790256562046168982012-07-26T22:53:00.002-07:002012-08-05T22:17:43.884-07:00National Jewish/Denver - Day 7The theme for our day today was foreshadowed by an experience we had first thing in the morning, on our way to the hospital.
As we idled at a long red traffic light beside the curb with all our windows open to the bright and sunny morning, our little rental car filled with the acrid yet heady scent of marijuana.<br />
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I looked out the windows by the street and saw a shaggy large man sitting right on the curb we were parallel to. He was just rising to his feet and had a joint in one hand and a bundle of marijuana like asparagus in the other as he sat in front of the medical marijuana dispensary.<br />
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"Your cig-rett is sure stinky!" exclaimed 'Lou .
The burly man called back as we pulled away, "This is good medicine, skinny little man - you should tell your mama to get you some, you could use some munchies!"
All this time and money spent at National Jewish Health when Big Burly Man at the Colfax Street marijuana dispensary had the answer all along! ;-)<br />
(He obviously has never seen 'Lou eat, though - not even double mummy wraps can stop him!!)<br />
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Dr. Leung came to see us at 9 am.<br />
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Ever since his last appointment with us when he said 'Lou needs to be eating 2100 calories per day, I've been very frustrated that my requests to log and calculate his caloric intake have been disregarded or forgotten. I haven't done a calorie count for him in over 2 1/2 years and have no idea what 2100 calories really looks like in relation to a kid his age and size.<br />
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What better time to gauge how much he's eating than when he's in a controlled environment like the hospital, and getting almost all of his meals from one location?<br />
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By yesterday, there was still no plan in place to track his calories despite me asking several nurses. I finally just got a sheet of paper and started listing every single morsel or drop to pass his lips.
Sure enough, Dr. Leung opened his consultation today by saying that now that we have 'Lou's skin under control, we need to address his history of growth issues.<br />
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He is less than 3rd percentile for both weight and height at this time, despite recently having one of the biggest growth spurts of his life.
I submitted my food log to his assistant and hope to finally have a calorie count tomorrow. I am very curious to see how his normal intake measures up - sometimes this little 29 lb boy eats more than his 180-something- lb, 6' 2" father !<br />
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Dr. Leung recommends seriously considering the human growth hormone injections we've already had recommended for 'Lou and encouraged us to seek a second opinion on the matter when we return to Michigan.<br />
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Dr. Leung also explained that although 'Lou does not have the genetic variation of filaggrin deficiency, he has every indication and manifestation of having the acute/acquired version of filaggrin deficiency.<br />
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Evidently, a minority of people with 'Lou's issues can also lose their filaggrin (a protective protein barrier in the skin) they suspect from having prolonged severe eczema and excessive scratching and infections which breaks the skin and protein barrier down and results in inflammation that also helps to erode the filaggrin, though they aren't exactly sure yet why it happens to some severe allergy and eczema sufferers and not others. <a href="http://www.foodsmatter.com/allergy_intolerance/peanut_treenut/research/filaggrin_defects.html">Scientists claim peanut allergy'gene flaw' link - 03/11</a><br />
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As the Dr. spoke, I imagined a thin spiderweb-like network trying to form just under 'Lou's skin. Then I imagined his fierce and relentless scratching and digging and I saw the filament-like threads disintegrating and falling apart and his skin swelling with fluid and breaking out in bumps as the beneficial protein disintegrated and inflammatory chemicals came rushing to the spot he was damaging with his scratching, resulting in bumps and hives like he always seems to make worse and cause to spread with his violent scratching.<br />
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"...but this is really really good news, that he doesn't have the actual genetic defect for filaggrin null aberration, because this means that he can outgrow this! In maybe one year's time, with the things we are teaching you here, he can replenish his filaggrin protein and have normal skin."<br />
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Even as he was talking, my mind was racing and dropping puzzle pieces into place. This would explain his atypical presentation of eczema in unusual places and at such an extreme sensitivity, as well as his continued reactivity to contact with any irritating/allergenic surfaces despite his now perfect and completely intact skin. And why the hives and itching stop as soon as you get him away from the irritant/allergen.<br />
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They aren't true IgE-mediated reactions that might lead to anaphylaxis, they are isolated to his damaged skin that can't keep the bad things out. The rest of us have laminated skin, he has rice paper skin. It's really NOT all true food allergies!!!<br />
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I flashed back to talking to his future kindergarten teacher and Principal about him starting school this Fall. She is the teacher for his anaphylactic-peanut sister.<br />
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I remember trying to explain his 'transient reactions', as I call them: "His skin doesn't protect him, but the hives and rashes don't turn into anaphylaxis, respiratory symptoms or GI symptoms like his sister's do. If you get him away from whatever is in contact with him and causing the hives and rashes, the reaction will clear right up." It was so opposite of what we told her about his sister's allergy, that I felt bad for having such polar opposite and confusing allergy children - yet still relieved that I don't have two with contact anaphylaxis! As far as we know, he'd have to actually eat a quantity of egg, dairy, peanuts or tree nuts to have a serious reaction.<br />
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I thought of the Post-It with titles for blog articles I jot down when inspiration strikes. The top of the list was for a story I never quite got to about his first hospitalization here in Michigan, when his siblings all caught Strep in their throats and he got it in his skin.<br />
"The illimitable strength of the boy with hyperpermeable skin."<br />
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I thought of all the times he needs stitches (4 boys here, did i mention that yet?) and how the ER docs are always completely amazed that the numbing gel sinks in and turns his skin bone white and totally numb in less than 5 minutes when it should take 20-30.<br />
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I thought of how I can't use anything but pure zinc on him for a sun block as everything else burns him like fire and gives him a nasty rash. </div>
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I thought about how he got his first wart recently- (something that people with the genetic mutation for filaggrin null aberration will be prone to for their entire lives, along with cold sores, fever blisters, etc...) and how the dermatologist said it was super tiny and only dropped one little drop of the freezing liquid on it and yet now he looks like he has a 3rd degree burn the size of a nickel.</div>
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I thought of my daughter, who has anaphylactic peanut allergy. By age 5, she'd had 4 anaphylactic episodes, the last of which happened AFTER she passed a medically supervised food challenge and had eaten her 3rd dose of peanut butter to keep her immune to it!<br />
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When we see hives on Jovie, it means anaphylaxis is on the way. I've been comparing 'Lou's hives to hers all this time and thinking that if it causes hives on him, it can be as dangerous as her allergy is and I need to get that food item out of his life completely.<br />
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And then there's our 3rd son, Jonah. He had severe reflux and tested positive to soy and peanuts (as well as a lot of seasonal allergens).<br />
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We completely removed soy from his diet, treated the reflux with apple cider vinegar and as long as he avoids soy, he remains 100% symptom free. If he gets an isolated accidental exposure, he gets hives. Just to soy. We habve a peanut free home and school, so I don't know what peanuts would do, but my point is, nothing causes hives for him except soy ingestion. It's consistent, it's predictable, it's only the thing we were told he's allergic to and nothing else. His skin is perfect 99% of the time, unless he eats soy.<br />
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It makes sense that 'Lou would eventually develop some true food allergies to the bigger and badder proteins in the worst of the top 8, like dairy, egg, peanuts and tree nuts. I know these allergies could lead to true anaphylactic reactions and would never allow him to ingest them, but now at least I feel like I understand how they happened.<br />
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I thought of our other child who'd had severe eczema. We battled it for over 2 years of his toddlerhood until he finally seemed to outgrow it. I've compared 'Lou's eczema to his so many times and not understood why I can't get 'Lou's under control when I did with my other son's. Removing dairy, frequent baths and slatherings, heavily coated footie jammies with aquaphor - why didn't any of this work for 'Lou? Now I know! Our other son had filaggrin and 'Lou didn't!<br />
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One piece of the puzzle that still doesn't fit is why 'Lou appeared to be born with skin problems if he doesn't have the genetic version of this issue, but the acquired one. By 2 days old he had strange, flattened hives all over his body, red spots and red, swollen eyes.<br />
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I asked Dr. Leung why he was born with skin issues but he couldn't say. He says not enough is really known about these skin disorders yet and filaggrin deficiency is still in the early stages of being researched - and they still don't even know exactly what causes "normal" eczema yet, either.<br />
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While there is a new cream on the market that actually contains filaggrin and which may help to replenish it, it can be costly and long-term use of emollient rich and barrier-type moisturizers can help to completely heal his skin in about a year, provided he doesn't have any major flares or setbacks and we work constantly at home and school to distract him from scratching.<br />
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I am over the moon to have an explanation that he can actually grow out of, get over or get cured of!<br />
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Another thing I love is that Dr. Leung remembers and agrees with my stance against excessive topical steroid use. He's only ordered the bare minimum use of the weakest prescriptions during our stay here and is adamantly opposed to any oral steroid use for skin flares, ever.<br />
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We did a challenge for almonds today, which 'Lou passed though he did not love eating them. He gagged for the first time that I've ever seen but finished all 3 servings with no reactions.<br />
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There was another parent group today, but I missed it due to hovering for the almond challenge. One of the kids in our program had to be transported to Denver Children's hospital today after a food trial due to a severe reaction, so a lot of us were skittish and helicopter-y today!<br />
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I went shopping tonight for his next food trial foods and stocked up for this weekend as my sister is coming from California to visit for 2 days.<br />
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I hope to take advantage of some of the free fun options for NJH patients like the zoo.
Tomorrow's schedule holds nothing but food challenges for 'Lou, so we are hoping to begin as soon as we arrive. If we start early and he has no reactions, we could possibly fit 2 or 3 foods in. I've decided I do not want to extend our stay, so I'm willing to put in extra hours when I need to.<br />
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The helpful hint of the day is about pressurized items and the high altitude. If you don't like wearing your tube of soft lip gloss up a nostril, open things pointed away from yourself!jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com0tag:blogger.com,1999:blog-2681304994711387294.post-91363337967087679912012-07-25T21:31:00.001-07:002012-08-04T11:24:17.148-07:00National Jewish/Denver - Day 6Today was a relatively uneventful day.<br />
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'Lou continues to eat corn daily and seems to not have a reaction from it, which is still like Christmas every day to me.<br />
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We challenged soy and he seemed to pass, but I'm a tiny bit dubious due to the fact that we've gone back to using topical steroids to calm down the reactions from wheat.<br />
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Next we challenged garbanzo beans and those seemed to go fine, but I really wish his skin was clear and we weren't using topical steroids so I could be sure there was really no reaction. The staff here assure me that any food reaction would break through the very minimal and low-dose topical steroids we are using only on his isolated rashy areas.<br />
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Our daily schedule (and these are subject to last minute change constantly) included a parent group on stress and coping.
I've been there now through one group leaving and a new one arriving, and this new group seems to have a majority of respiratory system issues, so a lot of the focus in the groups and education classes is on asthma and vocal chord dysfunction now, which means my schedule has lightened.<br />
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We took advantage of this today and left by 3:45 for the 1st time to go out to dinner with hubby's cousin and wife. "White Fence" restaurant has a fabulous allergy-aware handout about their menu, though unfortunately not many options for anyone allergic to the biggies on the top 8 (dairy, wheat, egg). But they are VERY kid-friendly with an awesome playground and horse-drawn carriage to get you back to your car in the giant parking lot.<br />
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We brought our own rice pasta spaghetti for 'Lou .<br />
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Tomorrow we have our second meeting with Dr. Leung and I have a list of questions all ready!<br />
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We have settled into our routine of getting to the hospital early, doing his morning soak there, throwing in our laundry and starting to figure out what is still accurate on our printed schedule for the day.<br />
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We stay late and leave last, stopping by Watercourse for 'Lou's vegan, gluten free sugar cookie if he was very good that day.<br />
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A couple of nights we were lulled to sleep by the melancholy rumblings of a Colorado thunderstorm. I wish the rest of our family could have joined us, they would love it.<br />
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It's starting to feel familiar and comfortable. It's so beautiful here, I have to admit I'm going to miss it when we go back to Michigan- all this bright sunshine!<br />
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Helpful tip of the day: if you have a food you're planning to trial for your child, go buy it yourself to bring in just in case the kitchen doesn't have it. I need to go get lentils, a few kinds of beans, tuna and sesame.jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com0tag:blogger.com,1999:blog-2681304994711387294.post-22208934346865421692012-07-24T20:38:00.000-07:002012-08-04T11:10:31.535-07:00National Jewish/ Denver - day 5Today we are halfway through the Day Program here and reality is beginning to reassert itself. I had resolved to let go of my former hard-won, carefully constructed and time-tested paradigm about my son's multiple food allergies. Like an atheist in the foxhole, I was happy to embrace the religion being offered, if only they could promise to fix my son.<br />
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The allergists here believe that eczema (or, in 'Lou's case, possibly this genetic skin disorder) is the primary diagnosis in kids like 'Lou and that while they may truly have a few serious food allergies, to believe that they are allergic to the entire top 8 allergens plus a bunch more is just not realistic and not really possible. It's just the eczema or filaggrin deficiency, making their systems more irritated and reactive because their skin offers them so little protection - especially when flared.<br />
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The Dr.s here assured me that they would feed 'Lou all but his most serious allergens (dairy, egg and peanuts) and I would be amazed to see that he would not react to them. The reactions I was describing are just not normal allergic reactions. Hives within 2 hours, vomiting, breathing difficulties, facial swelling - *these* are normal food reactions. What I have been dealing with are exacerbated irritations to his improperly managed eczema or other skin disorder.<br />
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Yes, despite my many Dr.s letters certifying the severity and sensitivity of his supposed allergic reactions. Yes, despite my Dr.s letters quantifying the specific amount of one allergen he could be given before he reacted. Yes, yes, yes- in spite of my meticulous food journals, test results and allergy reaction photo albums. I might as well have left my enormous 6" thick, 3 ring binder at home, because it's all been a case of mistaken diagnosis.<br />
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You might think I'd be bitter and defensive about this, but honestly - it was a relief to consciously decide to give myself over completely to a new paradigm. Let them take responsibility. Let them prove their theories to me. Let me be wrong, let me be re-educated, just let my son be better.
And then when they told me about this genetic disorder for filaggrin deficiency, even though I didn't want to get my hopes up, it all made sense. How he can be one of the worst allergy cases the Dr.s in Michigan have ever seen, but have absolutely no GI symptoms, ever. No asthma or respiratory involvement, ever. All his problems are in his skin and his growth- which is directly affected by severaly damaged skin.<br />
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We were also sure at one year of age that he had Celiac Disease. He didn't. Then it was for sure EE. It wasn't. Then Glutaric Acidemia II would explain almost everything - but it wasn't. So I promised myself I wouldn't get my hopes up that we'd finally found the obscure answer here, after only 2 days.<br />
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But I did.
And then today we had our 1st Clinical Review. This is the first of two meetings where the Dr. in charge of our case and the rest of our medical team go over 'Lou's progress, treatment and goals.
His progress is suddenly a little uncertain because after the success of introducing corn back into his diet, he reacted to wheat the following day. He broke out in a rash and became itchy for the 1st time since reaching intact skin nirvana on day 3 here.<br />
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Only nobody was willing to call it a reaction because somehow it doesn't fit this facility's definition of a "true reaction". It happened at the very end of the 2 hour window and it didn't last long enough to be a real reaction. Which was fine with me, I don't want him to be truly allergic to wheat- I'd love to be able to feed him organic forms of it again.<br />
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So we did a food challenge with it again today. He reacted bigger and it lasted longer.<br />
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Now we can't trial soy like we had planned, because we have to wait for the wheat reaction to clear up. Which it still hasn't, almost 7 hours later.<br />
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And we have 5 days left to get through tuna, salmon, almond, white beans, pinto beans, kidney beans, lentils, chickpeas and sesame.
And I just feel the stiff and bristle-itchy tendrils of his familiar food allergy specter sinuously tightening around my heart again.<br />
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Still not willing to admit defeat, the Dr.s here are calling his reactions his "issue" with wheat, saying they don't know what might be causing "the flare" (um, wheat?) but we will give it a couple of days off and then try it again and see if it happens a 3rd time.<br />
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And I just have the worst feeling that we woke up the beast and now he's going to react to everything they try. And they are going to keep calling it anything but an allergic reaction and I am going to keep trying to see it their way and in 5 days, I am going to take my itchy and slightly flared but -very -moist -and -not -dry- or -cracked -at -all kid home and soon be back in the same boat that I paddled to Denver.<br />
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Can you tell that I found out today in the Clinical Review that the preliminary test for filaggrin deficiency came back normal? What kind of mother wishes her kid had a genetic skin condition? The kind that would rather deal with a devil she knows than one she doesn't, I guess.<br />
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It isn't the final answer on the filaggrin question, only a Cliff's notes version of what his DNA has to say. The Dr.s here feel very strongly that he has every symptom for it, but I work in black and white and don't like to dabble in ambiguity, so I've already decided he's not going to have it.<br />
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The Dr. has ordered the full-length novel version of his DNA where skin disorders are concerned, called the 'equome sequencing for EDC' test. We won't get the results from this until September.
In the meantime, I've learned how to minimize and control his eczema - at least in a hospital setting.<br />
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I've learned that you can call it what you want, but so far 4 of the allergens I have always eliminated for him are still going to harm him in some way if I give them to him. It's going to be up to me if I want to spend all my time and money soaking and slathering his skin and replacing his greasy, ruined clothes and wrapping him like a mummy every night so he can eat wheat and whatever else he doesn't have a "true" reaction to, or whether I'm just going to keep eliminating it.<br />
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I guess I'm getting prematurely discouraged because if he really doesn't have this genetic disorder, and we got his skin as perfect as skin can get, why is he still reacting to the things they said he wouldn't?<br />
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And if he truly does react to more like I am afraid he will, this question will only get more and more amplified for me. I asked it today and they said they didn't know all the answers about why eczema acts the way it does and it can be different for everyone. But I talk to all the other parents here, and nobody has a kid this allergic to this many things who ONLY has skin and growth issues.<br />
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They all have respiratory and GI symptoms, too.
I just feel so frustrated, like I keep brushing my fingertips against something and it keeps skittering away.
Thinking about going home in 5 days without knowing for sure what causes him to be so sensitive that he reacts or "flares" to everything is going to feel like driving a car with a faulty radiator. Yes, I can stop every couple of miles and fill it up with water or radiator fluid and probably get everywhere I need to go like that eventually.<br />
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But a human being shouldn't live life being topped off many times daily to get through a day. And honestly, everything they've taught me to do to make his skin soft and clear, I could have learned just as easily from a website with directions.
I need so badly for this trip to be worth it. Worth asking all my friends and family for the help and favors, worth leaving my other kids and hubby, worth losing 2 weeks of summer with my family and 2 weeks of pay from hubby's job. I just had my heart set on finally understanding exactly what is behind 'Lou's issues, not just maintaining them.<br />
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The team mentioned the possibility today of keeping him longer. They'd have to admit him for inpatient hospitalization because we can't afford any more hotel costs. I know if he keeps reacting to more than the wheat, there just isn't enough time to get through all his allergens. I should be grateful just to have corn back, but I have an insatiable need to know exactly where things stand - and why.<br />
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So...if you've been keeping up with this blog, this part is like the season finale cliffhanger. Will we find out that his overreactionary system has been activated and he's just going to keep reacting to every thing they try now...or will he be fine with soy if we can try it tomorrow and we can go home with several new foods back in his diet?<br />
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And then the extended season premiere in September - will it all finally be explained or take the easy way out like "Lost" and never tie up those loose ends?<br />
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Anyway, we also did seasonal/environmental testing today and his grasses were extremely high - which is not news to us, and he showed a small reaction to commercial dog allergen (I wonder what kind of dog they use for this test and if it is only one breed?)<br />
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We were slated to lose our room today, which would really be a shame for us. Our daily schedule is to get 'Lou up and get him there right out of the hotel bed.<br />
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The less time he's naked here, the better he does. We also stay late every day to minimize hotel time and exposure for him. Really, we are only promised a room overnight for the 1st night and they have held it for us for 5 program nights *plus* through the weekend. We are welcome to come sleep there any time he can't sleep here, which is not the usual plan for this program and would pose paperwork difficulties for NJH with our insurance company, yet they put our needs before those concerns.<br />
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Parents are supposed to provide for their own food, while the child's meals are covered, yet they have extended me the courtesy as a breast feeding mother that my meals are covered by the hospital also and served with 'Lou's .<br />
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We didn't have a refrigerator in our new room today and before I knew it, our nurse was wheeling one in. If anyone reading this blog ends up doing this program, you could never find a more devoted advocate for your child and phenomenal nurse than Sandy.<br />
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'Lou got her extension and calls her at least 27 times a day. From our room. From the play room. From the desk 2 feet away from her own desk.<br />
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She never loses patience, she never forgets a promise, she knows exactly how to teach different people different things. She knows which Dr.s are the best fit for which patients and she pulls all the strings to match them up, even against scheduling conflicts. For us, Sandy personifies everything good about this program, as well as just about every other professional there. But if people were lottery tickets, Sandy would be a 50 million dollar jackpot winner.<br />
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I still wish they controlled for cross-contamination better and hold my tongue when they speculate about what else could be causing 'Lou's "issues" after the wheat challenges (um, the nuts the girl was trialing at our table? The cow's milk the toddler spilled on our chair and his mother just wiped up with a dry paper towel?) but I promised myself I wouldn't be challenging or contentious (yes, I know - I hear you LOLing right through the computer) during this hospitalization and I said something on my 1st day and was assured it was carefully monitored, so I've had my say on the matter.<br />
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Now for my helpful tip of the day: they will tell you that the pots and pots of aquaphor are going to grease stain your clothing, but soap nuts gets it right out! I get mine at www.naturoli.com.<br />
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Other items on our agenda today included a therapy session and parent group.
And my small triumph of the the day - 'Lou had his 1st jello ever today - orange. He declared it to be "super awesome booby jiggly good."
Here's hoping for clear skin tomorrow and no need for an extended stay.<br />
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<br />jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com2tag:blogger.com,1999:blog-2681304994711387294.post-36589346625936608512012-07-23T23:01:00.001-07:002012-08-04T10:59:25.813-07:00National Jewish health/Denver – Day 4Today was frustrating. I will keep it short and sweet, as we are utterly exhausted.
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Lou's appointment with the urologist from Denver Children's hospital - Dr. Campbell, was way out in the middle of nowhere (Broomfield) and somehow my GPS got me lost. After checking in, the receptionist told me blithely, "Oh yeah, we've been here over 4 years and we're still not on the GPS system correctly yet." <br />
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The treatment for his foreskin issue is extremely strong topical steroids for 12 weeks. If it does not work, he might need a circumcision.
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He did a food challenge for wheat today and failed.
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The only good thing today was that we got to meet my husband's cousin.<br />
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To end on a positive and helpful note, let me say that bringing overnight bags on wheels with retractable handles is another thing we have done that has helped tremendously !
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Also, despite the discouraging events today, we managed to get in all three soak & seals
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And get a big load of laundry done at the hospital.
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AND! 'Lou is already down to only needing dry wraps on his extremities at night now, over his aquaphor.<br />
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Sent from my iPhonejackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com6tag:blogger.com,1999:blog-2681304994711387294.post-847696569269121192012-07-22T22:56:00.000-07:002012-08-04T10:57:01.763-07:00National Jewish Health/Denver - Days offIt's only been 3 days of treatment for 'Lou and it somehow already feels like it's been weeks. All of the new information, directions, people, treatments, protocols, and places are downright disorienting. I take notes every time I talk to someone. I program addresses into my GPS as soon as I get them.
A couple of days off were sorely needed!<br />
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We had planned to get out of the hospital on time Friday and go out for a dinner date to one of the only 2 restaurants in town that might be able to accommodate 'Lou's remaining restrictions: Watercourse or City O City.<br />
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Our dinner was hardly begun before 'Lou experienced severe pain related to the complications his long-term eczema has caused to his foreskin. We went straight back to the hospital for his bedtime soak and the Dr. on duty examined him. It wasn't
quite an urgent care situation and the bath helped to soothe his discomfort, so we just did his bedtime wrap routine (just hands and feet now) and came back to the hotel.<br />
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By morning, his symptoms had completely abated so we were able to plan a fun outing to the Denver Aquarium with friends who happened to be visiting Denver at the same time as 'Lou's hospitalization.<br />
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We still hope to make it to the Zoo, (country's only mountainside one!) which is totally free for NJH patients.<br />
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Friday I was able to get all 3 of 'Lou's required soak and seals in, Saturday I did 2 but slathered him up with cream in a bathroom at a restaurant to tide him over.<br />
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Saturday night he woke up at 4 am in our hotel room, scratching and crying for over an hour.<br />
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We both had gotten stuffy noses and I was head-achy.
If I could make any improvements to NJH and this program, one would be that they buy a building near the hospital and make their own allergy-friendly suites - with no carpet - to rent to patients and their families. Another would be the hospital menu.<br />
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We tried to tell the weekend food manager about green smoothes and got a cantaloupe and spinach watery, frothy mess. But I digress.<br />
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We couldn't get back to sleep this morning at 4 am, so we packed up our laundry that needed washing and headed to the hospital with 'Lou still in his bedtime feet and hand wraps.
We arrived and did laundry, gave him his morning soak and slathering, ordered breakfast from the kitchen and promptly took a 3 hour nap in the clean, chemical and allergen free, bright and sunny room they have held for us.<br />
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Wanting to spend as little time in the hotel room as possible, we checked out Cherry Creek Mall near the hospital and 'Lou got to burn off some energy in the play area. I wanted to wait until the fiercest part of the 102 degree heat burned off and then maybe swim in the hotel pool.<br />
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In the meantime, I stopped by the giant Rite-Aid in the mall parking lot and asked if they had a spare box in the back I could have. I got lucky and scored a fairly large one. Now I can ship home some of the things we've gotten that won't fit into our luggage. Toys he gets as rewards at the hospital, supplies they give us like 1 lb tubs of aquaphor, nasal irrigation kits, etc...<br />
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We came home and swam and then watched our 1st Denver thunderstorm through our hotel room glass doors.
Tomorrow we have an appointment with a urologist at Denver Children's Hospital and then should be having some more food challenges and/or scratch tests done.<br />
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I wish we had more time to explore some of the fun stuff here - they have tons of it. There's a huge amusement park and water park near the Aquarium, as well as a Children's Museum. The people here are easygoing and friendly, (courteous drivers here, too!) though everyone is sad and in shock about the shooting at the 'Batman' premiere right now. Everywhere we go, someone knows someone who was there and President Obama was here today to meet with the survivors.jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com0tag:blogger.com,1999:blog-2681304994711387294.post-40576086121937164812012-07-21T00:49:00.003-07:002012-08-04T10:57:59.931-07:00National Jewish health / Denver - Day 3Day 3 is Friday and we landed in Denver on Tuesday. Apparently, this is just enough time for us to be getting homesick and overwhelmed with the long hospital stay, because we both woke up feeling edgy and blue.<br />
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I did 'Lou's wraps by myself last night and he slept in them all night. He still woke up with a slightly rashy face and cracked eyelids. It turns out that the residence inn we are staying at (on Zuni street) is a pet friendly- only hotel. They have no rooms that have been pet free, a fact I discovered just before flying out of Detroit and which they tried to remedy by cleaning the carpets 6 hours before we arrived.<br />
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Needless to say, the damp carpet flared 'Lou's feet and ankles up and the pet residue made his nose stuffy.
We went in to NJH early again today to do a load of laundry so he'd have enough socks and footie jammies for the day's soak and seals (they said to bring 6 pairs of tube socks- trust me, you need like 12) and to eat breakfast there before starting our daily schedule.<br />
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The 1st business of the day was that NJH set up an appointment for 'Lou with a urologist from Denver children's hospital for Monday. They also provided me with a large packet of info on the genetic disorder they are testing him for: filaggrin deficiency.
Next came a blood draw for 'Lou to test for the genetic disorder and some other things. Seeing as how we'd already started the day off on the wrong foot, he obligingly kept it consistent and screamed and yelled his fool head off for the entire blood draw.<br />
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We also got the results back on his yeast test-scrapings - negative.
After breakfast, we did his first soak and seal of the day and he was thrilled to hear that he no longer needs his head or face wrapped.<br />
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Then down to the real business of the day: the highly accurate form of skin testing that NJH is known for - the "puddle test". This is where they take the potential allergen and soak it in an ampule of water over 24 hours before the test, then mix it well and use that to scratch onto the patient's skin. No preservatives, no additives, no alcohol.<br />
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We did the puddle test for corn and 'Lou had no reaction.<br />
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The next step is the gold standard in ruling out an allergy: the food challenge. During my stay here so far, I have seen that many children are fearful or reluctant to even taste the food they've been told for so long can make them very sick. They have to be bribed, coaxed, encouraged or threatened to do it- and some still won't and more creative efforts must be employed. Not so my son. He saw those sun-colored niblets of joy and the nurse nearly lost a limb.<br />
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He passed three corn food challenges today with nothing more than transient redness and bumps across his face and arms. I had to keep telling myself, "this is not a true allergic reaction- this is his very thin and damaged skin being sensitive to something. This is not going to be the beginning of a big flare like I've consistently seen from corn in the past, because we've got his skin in the best shape its been in, in his life. His skin can prevent him from having a true IgE response when it is healthy and if this does turn into a persistent issue that messes up his skin, I know how to clear it up now!"<br />
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It was very liberating and empowering. Let's hope it keeps working this well when we get home!
By the time we got done with the food challenges and waiting for 2 hours after to be safe, it was well past 3 and the puddle tests for our dogs, shea butter and soap nuts were ready.<br />
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All four were completely negative for any significant reaction from 'Lou! This is a huge relief because even though I have never seen 'Lou have a reaction from our two Great Danes or the shea butter or soap nuts,we rehomed one of the dogs and often wonder if we need to remove the second one.<br />
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Some of 'Lou's Dr.s are also skeptical about the unknown entity that raw shea butter and soap nuts represent and now we can all rest assured that these items aren't adversely affecting him.<br />
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In addition to the above, we did puddle tests to beans, peanuts, almonds, lentils, chickpeas, soy milk, milk and egg. Milk and egg caused a considerable reaction; soy milk, chickpeas and some legumes and beans caused milder ones. Even his weals are atypical and flattened, another indicator of filaggrin deficiency, according to staff here.<br />
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I'm waiting for the food challenges as the real indicator of what we can feed him. Egg and milk probably won't be challenged as they give every indication of being "true" allergies as they cause hives upon contact and have test scores high enough to indicate potential anaphylaxis.<br />
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The last task for our day was learning how to irrigate 'Lou's sinuses, something which I already did my own version of, but this is much more thorough and causes the flow of water to go in one nostril and out the other.<br />
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When I first registered for NJH, I was told we'd be at the hospital from 8am to 3pm on weekdays and that evenings and weekends would be ours. The truth is, we are really devoting about 6am to 6pm every day to getting and being there. We go in early a lot to do laundry we will need for the wraps, eat breakfast before all the tests and meetings and just to lug all our stuff from hotel to our hospital room.<br />
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Even though it's only been 3 days, It is really starting to feel like home base. The staff fold and return our laundry if I am with a Dr. when it's ready. They've made special arrangements as a breastfeeding mother to provide all my meals while in the hospital, along with 'Lou's. They've told me to come in over the weekend as often as I like - for meals if we need safe food to eat, to do 'Lou's soak and seal there if I don't like doing it in the hotel.<br />
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Tonight he had worsening symptoms of the complications from eczema to his foreskin and I rushed him in there at 10pm to have it looked at and the Dr. invited us to just spend the night, saying it might make me feel better to have him in the hospital just in case.<br />
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Today I learned that a building next to the hospital is actually a school with about 80 students that the hospital funds and provides medical care to, who have substandard insurance or finances to get the allergy care they need otherwise. Now they can go to school safely, with their health and medication needs met. I was also very surprised to learn that NJH has a peanut desensitization program! I had not realized that any major hospitals were doing that, let alone a giant in the allergy world like NJH!<br />
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Tomorrow we might go to the zoo. It's free for NJH patients. It's going to be strange having time that isn't scheduled with every minute accounted for. If we sit still, we are going to get avalanched by homesickness.<br />
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Some of my best tips that are saving our lives on this trip are:<br />
Bring adjustable water sandals - they are the only thing that will fit over the foot
wraps.
Bring an iPad or other entertaining electronic gadget- perfect for skin scratch tests.
Buy extra underwear for your child - theirs will quickly have the elastic ruined by all the ointments and creams.
Bring a rolling overnight case for both you and your child to take between hotel and hospital. Yours for medical records and whatnot, theirs for all the tube socks, footie jammies, sweats, creams, lotions and toys the hospital will give them.
Don't bring clothes for yourself that you care about- they will get greasy, oily imprints all over them.
Do bring something to put your hair up with if it is long. You will get greasy, oily ointments and creams in it.
If you come in spring/summer, use the rooftop play area for when your child is getting cold in the wet wraps. The heat it retains there is marvelous.<br />
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<br />jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com2tag:blogger.com,1999:blog-2681304994711387294.post-49188528732395405592012-07-19T21:29:00.001-07:002012-08-08T16:36:25.328-07:00National Jewish/Denver – Day TwoFor day two, I was looking forward to our first meeting with multiple doctors.
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'Lou slept in the wet wraps all night long and awoke this morning in the hospital with much improved skin. Our nurse, Eileen - was wonderful with him and so patient with my repeated fretting over everything from the mild steroids on his skin to using our own sheets from home on the beds. Her mild manner and supportive help showed me more than any words could have, that nothing was going to happen here that I was opposed to.<br />
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The food service manager and I are learning our way around each other's needs and limitations and have established a mutually satisfying relationship for getting appropriate food to 'Lou and I.<br />
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She makes fresh fruit smoothies for us every morning and I request that she drop in a handful of spinach leaves or honey to increase the protein & calories and she does so with pleasure. It takes so much stress off this situation to know that we have a safe food source ensured!
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The hospital utilizes a computer system to log each child's specific allergies and intolerances. When you call the kitchen and give your child's name, they automatically see the restrictions your child has and prepare their food accordingly. Debbie and Margaret bent over backwards to keep up with 'Lou's insatiable food demands and their role in making us feel at ease while here is possibly even more vital than any of the medical staff!<br />
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After removing his wet wraps and moisturizing Lou thoroughly, we had breakfast and then waited for our first consult with Dr. Leung – the hospital's eczema specialist.
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While waiting, we had to go get his stats. Between July 9 and today, he somehow lost more than 1 pound. This fits with his usual pattern of only gaining well when he is extremely flared up. He has not been very flared up at all for the entire month of July. I am not going to feel discouraged until we get home and I can compare his weight on the same scale he usually gets checked on.<br />
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His blood pressure was also a little low, which should tell you how comfortable he is in a hospital setting!
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Dr. Leung made his appearance before 9 AM. He examined Lou and noted that his eczema is not the typical pattern for a child his age. He also did not feel that Lou's growth chart made any sense, given how well he eats and how well we eliminate his allergens.
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He said that 'Lou's skin problems appear to be more caused by extreme dryness than actual reactions or flareups. He recommends that we discontinue the minimal use of topical steroids within another day and go exclusively to sealant – type moisturizers. He was also adamant that oral steroids should never be used to treat or manage 'Lou's eczema.<br />
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He also recommends that we check 'Lou's cortisol levels and check his skin for yeast.
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His final recommendation is that we check 'Lou for a genetic disorder called filaggrin null mutation. It could potentially explain the excessive and severe food allergies, the constant flared state of his skin with unusual presentation and his growth problems. Children with this disorder at 'Lou's age need to get 2100 calories per day.
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All roads seem to lead back to a genetic disorder with 'Lou. We will do the test for it tomorrow and should know within a week. I am not going to invest much time or energy in this possibility until we get a test result that indicates I need to, as we've been down this road more than once before - and he never has what they think he has!<br />
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However, Dr. Leung did say that this genetic disorder is primarily found in very fair haired and fair skinned people with Northern Irish and/or Scottish descendancy. He seems sure that 'Lou has this and sent me a big stack of recent research on it.<br />
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<a href="http://www.ncbi.nlm.nih.gov/pubmed/21377035">Loss-of-function variants in the fila... [J Allergy Clin Immunol. 2011] - PubMed - NCBI</a><br />
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<a href="http://www.ncbi.nlm.nih.gov/pubmed/18774165">Filaggrin in atopic dermatitis. [J Allergy Clin Immunol. 2008] - PubMed - NCBI</a><br />
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<a href="http://www.nejm.org/doi/full/10.1056/NEJMra1011040">Filaggrin Mutations Associated with Skin and Allergic Diseases — NEJM</a><br />
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<a href="http://www.dermaharmony.com/eczema/eczemageneticsfilaggrin.aspx">Eczema—Eczema Genetics and Filaggrin Gene</a><br />
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In the meantime, it could also explain the abnormality 'Lou is experiencing with his foreskin. Dr. Leung wants us to see a urologist at Denver Children's Hospital while we are here, and has warned me that a surgical remedy might be necessary. I am way too overwhelmed and frankly devastated about this possibility to even process it right now.
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My feelings aside, it was a wonderful breath of fresh air to have a specialist in a hospital setting really spend time explaining and speaking frankly to me. I definitely got the feeling that he spent a lot of time researching 'Lou's history and all of the medical records I provided.
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We had breakfast and did another wet wrap on 'Lou while we waited for our appointment with Dr. Fleischer, the hospital's food allergy specialist.
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We were able to wash a couple of loads of laundry, which is another perk that is worth its weight in gold.
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Dr. Fleischer is one of those doctors of the persuasion that eczema can cause many false positives on food allergy tests.
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He says he is only going to assume that 'Lou's very worst reactions and highest test scores are true allergies: egg, dairy, peanut, some tree nuts and sesame.
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The rest of the foods that we are eliminating, he feels are fair game for food challenges. He says time and time again the families of children like 'Lou eliminate a vast number of food options unnecessarily.
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We decided that I would stay late today and we would fast track doing a skin allergy test before deciding which foods to food challenge for Lou – as soon as tomorrow!
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If we are really going to try giving him corn and beans and lentils and soy and wheat, I want to do it as soon as possible so we have as many days as possible to see any delayed reactions.
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Lou's skin is not quite perfectly cleared up yet, but the skin testing still only showed moderate reactions to most legumes, beans and some nuts. I have a feeling the doctor will want to challenge them tomorrow, as well as corn.
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I am very excited – if there was ever a time and a place to absolutely confirm or rule out a problem with certain foods, it is now. Additionally, another fabulous opportunity available by being at this hospital is the chance to bring in specific items from home and have them tested.
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I brought dog fur and dander that I carefully combed from our two great Danes. The doctor also requested a soap nut and my raw Shea butter to test, as well. He will perform another skin scratch test with these items sometime this week.
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He agrees that he is not happy with 'Lou's growth charts and would also like to see him consuming 2100 calories per day. Even if 'Lou does not have the genetic disorder Dr. Leung suspects, Dr. Fleischer theorizes that constant extensive skin damage can take up a lot of calories and energy to heal, thus slowing growth.
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After seeing Dr. Fleischer, I went to attend a parent group on helping school children with chronic health conditions and 'Lou was off to art therapy class!
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While we discussed 504 plans drawn up to include our children being moisturized halfway through the school day, he painted a beautiful picture and got to socialize with the other children in the program.
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There are play therapists waiting to watch your child and play with them while you attend education classes or have meetings with doctors. I am still trying to get used to basically having a babysitter at any moment and leaving my child with them. 'Lou has not so much has batted an eye at being left with a stranger for an hour and a half!
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They use a reward system of stickers to fill up a page for good behavior. When the page is full, the child gets to pick a toy out of a large toy closet. They get stickers for things like cooperating with the wet wrap process, being brave for blood draws and skin scratch tests, taking a bath when they hate them, or eating foods they may not want to during a food challenge.
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There is also a meeting provided with a licensed clinical social worker who is basically there as a therapist for you and/ or your child. I had mine today and was pleasantly surprised that she did not spontaneously combust when I told her that I am not in a hurry to get my child out of my bed nor wean him.
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<a href="http://www.nationaljewish.org/search-results/?term=jennifer+darr">Jennifer Darr - National Jewish Health</a></div>
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In fact, National Jewish and the staff there have far surpassed my expectations. I have seen families from every walk of life and every national demographic in every state of stress and sickness – and all have been treated with the utmost care, concern and professionalism. I have seen kids of every temperament being treated with equal nurturing and patience. There is no feeling of being rushed or that you are just another number.
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Even though the philosophy about my son's food allergies does not jibe with what I have learned and experienced, I have decided to open my mind completely and cooperate to the fullest and make sure that I make every minute of this trip worth it.
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I sensed that they were expecting some resistance on my part to many of the proposed food challenges. But I am adopting a "you break him, you buy him" attitude about it. What other time am I going to be afforded the opportunity to see if my son truly reacts to the foods I think he will – and if he does, I have an entire hospital there to help him?
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I already know they won't even touch any of his potentially anaphylactic foods, so all we are talking about is more eczema and rashes or possibly hives. I'm excited to have the chance to find out once and for all – it has been so long since he has had so many of these foods!
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Sent from my iPhonejackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com2tag:blogger.com,1999:blog-2681304994711387294.post-37167968679992614222012-07-18T22:45:00.000-07:002012-08-05T22:42:05.122-07:00National Jewish/Denver – Day OneToday was our first day of treatment here at national Jewish health.
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The day began with a physician's assistant, Elizabeth - taking a meticulous history about Lou's symptoms and diet.
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Next we met the Dr. on duty, Dr. Spahn. This is how he looked to 'Lou and I:<br />
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and this is how my older boys back home think of him: </div>
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He was kind, patient, gentle, soothing and very reassuring. 'Lou liked him instantly. He was there so much that 'Lou is sure he lives there.</div>
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We knew that we would be spending this first night in the hospital, so we were sure to bring the jammies and tube socks for the wet wrap treatment we were told to expect.
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Lunch was a little tricky, as they do not have very many options that meet lou's restrictions. In fact, I have to admit that I found the printed menu to be somewhat shocking for an allergy hospital. It consists of pizza, hot dogs, milkshakes, cheeseburgers, bean and cheese burritos and other dairy and allergen- laden options. Gluten free items are not even listed on the main part of the menu – you have to call down to the cafeteria and speak to a cook to make a special request for them.
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After lunch, he was given his first "soak and seal". He was fairly cleared up until the trip here. Exposures on the airplane and in our hotel room caused him to flare up. I had been hoping to decline the steroid application during the soak and seal process, if his skin was clear enough.
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For the first one, the doctors agreed to let me try nothing but our raw Shea butter. If it worked well enough, I could hope that we would not need topical steroids at all.
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However, his skin was cracking and peeling and the Shea butter was not enough. For his second soak and seal, we did mild steroids topically.
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Staff at national Jewish plan and present an itinerary every day for the parents of their patients. Today mine included a class on atopic dermatitis.
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I was surprised that more information on food allergies was not presented.
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When making arrangements for dinner, I learned that there is a refrigerator in the common eating area of the patients – only floor of this hospital and that parents may bring their own food into the refrigerator here.
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To my great surprise, there were no allergen restrictions on the foods brought in whatsoever. Families eat dairy, eggs and even nuts in this area. In fact, food trials are carried out in this spot and I saw a bag of nuts right on the table before dinner time today.
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The mother of an anaphylactic – reactive peanut allergy child in me was aghast. I had to suggest to myself that perhaps most atopic – reactive children do not also have anaphylactic reactions. Or the staff here are a lot more careful than appearances would indicate at first glance.
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The plan is to continue doing the soak and seals three times daily until they get his skin perfectly cleared up.<br />
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In the meantime, I will be seeing an eczema specialist, a food allergy specialist, a psychosocial development specialist and attending classes to educate myself on Lou's condition.
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Once his skin is perfectly cleared up, the food allergy testing begins. After the test results are obtained, we will do actual food trials.
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The gist of the philosophy I am picking up here is that eczema is the primary diagnosis for kids like 'Lou and food allergies can often be mistakenly blamed.
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I am almost being guaranteed that we will discover that many of 'Lou's restrictions are unnecessary. False positives are extremely common with children who have skin as bad as 'Lou's.
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So the plan is to get his skin perfectly cleared up and teach me how to keep doing the same thing at home. The next step is to show that we were restricting things we really did not need to and begin feeding him allergens we used to withhold.
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This part of the hospitalization thrills me as much as it terrifies me. To think that they might actually try to feed him dairy – which he has never had so much as a single crumb of in his life yet! Or egg, which he also has never so much as tasted.
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When you have to eliminate so many allergens so religiously for so long, there is almost a brainwashing effect that has to take place. To think of anyone ever giving your child forbidden foods almost feels like sacrilege! I am working very hard to overcome my mindset and try to expand it while I am here.
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I really and truly hope that we can add some foods back into our diet. However, it has been my experience that reintroducing an allergen can take several weeks to cause Lou to begin reacting. Not to mention the daughter I have who passed a food trial with flying colors and then became re- allergic to peanuts to an even greater and deadlier degree than previously!
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One of the best parts of this trip so far is meeting the other parents. We have the same sense of humor about our children's issues and the impact it has on our family and finances. We have had the same experiences with doctors who don't listen and don't understand – or don't seem to want to.
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For day two, I've been told that I can get some help with finally getting my allergy child out of my bed and learning to discipline him because so many parents are over-permissive when their children have been this sick for this long.
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Please send thoughts for patience, tact, and the common sense to shut my mouth if I'm outnumbered.jackhttp://www.blogger.com/profile/00429431886149351540noreply@blogger.com2