Just wanted to give you all a quick update. It has been and continues to be an extremely busy month for us.
On the 6th, we took Daylon in to the pediatrician to see if we could get into an allergist. He was having a weird reaction (almost looked like hives) anywhere his bm touched and some other GI things (which he has always had) that made us think of allergies or GI issues. She referred us to the allergist.
We saw the allergist on the 11th, he did not feel that it was allergy related but went ahead and tested him for 9 food allergies and 16 environmental allergies. All came back negative but he felt that with D's constant runny nose and occasional dry cough we should treat it and see if we can get that resolved. So, he prescribed a daily dose of Claritin, and an albuterol inhaler for the days he has the cough, and referred him to a Gastroenterologist to go over the GI issues. We were very excited to see the GI, because it is something that we felt should be done also.
We saw the GI specialist on the 15th, and she felt that Daylon has enough going on that we should run some other tests that have not been run before. So, on the 25th Daylon will have a Gastric Emptying Study, on the 27th he will have an Endoscopy, and on the 29th he will have a sweat test to rule out Cystic Fibrosis. In the meantime, she has put him on 2 boxes of Boost a day.
Daylon had his Endocrinology appointment on Thursday and he is doing GREAT!! He was 34 7/8 inches and 29 pounds. His height may have been a little off because he was not cooperating well, but this puts him between the 1st and 3rd percentile for height and 25th percentile for weight. I asked our endo about his weight, because of the GI's concerns and he told me that we could give him the Boost on the days when "his attitude is bigger than he is and his halo turns into horns (when he refuses to eat) otherwise consider him boosted." We also asked how long Daylon will need the growth hormone shots and what would happen if we took him off of them now. He said that Daylon will be on the shots for another 10-12 years and that if we were to stop in the near future it would be like going from here to Chicago and stopping in Denver, on the right track but we have to keep going to reach our final destination. So it looks like we have years of this ahead of us. He did say that he doesn't think Daylon's other issues are related to the growth hormone axis deficiency.
On the 7th we did hear back on part of the genetic testing that he had done. His testing for RSS came back normal, which we knew would most likely be the case. Now, we are just waiting on the Microarray results. Hopefully we will get those soon.
Thankfully Auntie N. came back from Missoula with me, so she can watch the girls while Daylon and I are doing his testing this week. It will be a very busy week for us.
Thank you all for your support, it means the world to us!!!