Today was a lot more of the same from yesterday.

    We are confident now that he is allergic to Desonide (one of the major steroid creams used for “sensitive areas” and for mild/moderate outbreaks. We will be meeting with one of the research skin doctors tomorrow to get his thoughts on Jonah. He has proven himself to be a puzzle at every new layer they uncover.
We also met with a sleep specialist today who is as confident as she can be without a full sleep study that Jonah has sleep apnea. They are trying to get him into a sleep study at the neighboring children’s hospital while we are here. If they are unable to schedule it, there is a specialist in Houston that trained at National Jewish who we will schedule with when we get back. He is also having night terrors on top of that, which luckily he has no recollection of at all.

     The rest of Jonah’s skin testing came back negative…like always. They did blood tests this morning. It was disastrous, but Jonah recovered pretty quickly with a few stickers. We should get most of those back tomorrow. I’m honestly not even sure what they were testing for. I’m sure they were vitamin deficiencies and immune system irregularities.

We are also running into a little bit of an issue with the baths (other then the total meltdown he had about the first two today). Jonah needs to have his ears submerged because of the cracks in his ears, but it is causing fluid to accumulate in his ears and drain out with just a little bit left after each bath. We are praying that this doesn’t turn into an infection. He is getting to be basically a professional with the wet wraps and his skin is already way way softer then it was when we got here after only 2 days.