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.

So after an EXTREMELY long day yesterday (up at 5 am…went to bed at 12 am in a different time zone) I was definitely not appreciating the internal alarm clock that went off at 5:45. We checked into National Jewish at 8:30 this morning and did a tour of the unit, met our staff and got acquainted with procedures here and that sort of thing.

We have seen 2 specialists already and will see at least one more tomorrow. I really like our primary doctor. He and Jonah have made fast friends and he seems to get the frustration that we’ve had. They ordered skin testing and did half today and half tomorrow. Everything came up negative, just like always.

The only definitive from today is that Jonah has asthma. It’s not bad enough to really require any intervention at all at this point, but it does need to be monitored. Jonah had his first official NJH wet wrap. He did not appreciate the face wrap or wet pajamas at all. After they wrapped him up, we went and found a playground where Jonah had a chance to unwind and run some.

They will be running labs first thing in the morning, so they can minimize the number of times they have to stick him. He also got to go to art therapy today where he got to draw an island and take all of the things that make him happy and healthy. He took his vitamins, creams, hearts, his family, Mr. Brian (our chiropractor) and Dr. Perry (who was riding a horse???). He also made sure there was a playground there. He loved meeting other “itchy kids” Tomorrow is a day of more skin tests and labs. There are only 4 other kids here so he’s getting lots and lots of attention.

Also tonight we are noticing a reaction to one of the steroid creams and we remember why we had stopped that one. We will try it one more time tonight and see if it reacts again. If it does that cuts out one of the major medications out of our repertoire.