National Jewish/Denver - Day 9

Today saw 'Lou waking up almost completely cleared up from his breakout last night after the horrible stomach pains in the restaurant.

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.

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.

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!

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.

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.

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.

I met Dr. Erwin Gelfand today, who is the head of pediatrics here.

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!

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.

 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! 

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!

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. 

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 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.

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 .

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.

 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 !!


Nikki said...

I am so thrilled for you. Safe travels to you two superheros! :)

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