First of all…doesn’t he look awesome?

Today was kind of non-climactic medically speaking. We’re in the in between stages of the program where they’ve ruled out all of the normal eczema kid stuff and now we’re working on the “my kid is interesting” eczema stuff. Tomorrow we’re meeting with one of the adjunct dermatologists that splits time between Colorado Children’s and National Jewish. She is looking for some very specific skin disorders and seeing if she finds anything that maybe one of our doctors has missed. She has been armed with a specific list of symptoms that they are sending him to her for.

Next week we will begin patch testing (unless she wants to start it tomorrow and then we will start it with her) and they also want to try some antibiotic challenges with him next week since we are down to very very few that he can take without reaction. Monday we will also see ENT to get a new CT scan done to see if they can see a correlation between the amount of stuff in his face to the amount of irritation on his skin. Our ENT has noticed it before, but they want to look at films themselves, especially since he’s rinsing nastiness out of his nose.

This afternoon we escaped a little bit early and went to the zoo. Jonah LOVES zoos.
We’re hoping to go see snow this weekend up in the mountains and go to the aquarium or the science museum (both are free for people staying at the Ronald McDonald house, which is awesome). Tonight, there was a group that came in and made dinner that were all alumni from the University of Central Florida that live in the Denver area now. I think it’s kind of amazing the groups that pull together to help parents out when they are staying here. We’ve had the best experience possible so far for spending 2 weeks in a hospital with your child. Please continue praying for clear answers and a happy, healthy kid.

In what might have been the highlight of the trip so far, this peacock chased Jonah for a few steps and squawked a few times. I thought he’d hate peacocks forever…Nope. He still tried to pet it again later.

After meeting with Dr. Leung this morning, the rest of the day was kind of spent trying to make all of his recommendations happen. We switched Jonah’s face cream from a steroid immediately and will begin switching his body cream away from a steroid as well. We are in the process of scheduling a few procedures at the children’s hospital that partners with National Jewish to get some additional results. The sleep study is still trying to be scheduled and they are also trying to get him in to get some patch testing and skin scrapes done as well. He has had the patch testing done before, but it’s been a VERY long time. They will basically put a large bandaid with multiple different types of chemicals and other things he comes in contact with on his back and then leave it there for 2 days and then pull it off to see how his skin reacts. For those two days he can’t touch it or mess with it at all. It will make him super happy in the sense that he won’t have to do a bath over those days, but I’m sure it will be irritating in it’s own right. We haven’t done skin scrapings before, but they really don’t sound enjoyable at all.

Jonah also did what they call a free run test today. He ran for over half a mile and then had to stop in the middle of it to do breathing tests. Somehow his readings got better the more that he ran. He’s a unique kid. He kind of enjoyed running that long. I’m glad that he’s figured out how to run since baseball season last year 🙂

When we got back home today Jonah had a package from Aunt Becky with a card and a new book and he was super excited to get to open mail. He is pretty easy to please… It makes Christmas easy.

I’m not sure what is going on tomorrow in all honesty. We did have to start antibiotic drops on his ears, and he is draining a lot of colored junk so they wanted him to have an ENT consult at some point in the next few days. I know that I have a lot of homework for Dr. Leung to turn in, so I’m assuming we will meet with him again in the morning. We will also be meeting with our social worker for the program as well again. Please continue praying for good solid answers and a solution for our boy.

Also, In Denver, Starbucks are in a barn sometimes.

I wanted to post this while I remembered pieces of what the super specialist said.

We just saw Dr. Leung, who from the response I got from our allergist (Dr. Perry), is pretty much the begin all and end all to allergy/immunology/eczema research. I went and googled him, and I believe him.
He threw a lot of things at me and I caught very very little of it, but gave our fellow some clear direction to run with. We will see him again in a few days. The biggest piece of what we got out of what he said is that Jonah is “very very unusual” which we were already aware of, but to hear it from someone with prestige in the field that we’re looking at with Jonah was strangely reassuring.
From what I gathered, he thinks he may have a unusual type of psoriasis on top of the eczema. There is also a good chance that Jonah has had a pretty consistent staph infection that presents non-traditionally for quite a while. He also suspected a few other types of things that I honestly have no idea what he was talking about. This guy is really, really smart and he is intrigued by Jonah, which is pretty much exactly what we’ve been praying for.
We are being sent over to one of the partner hospitals to see one of the dermatologists and one of the ENT’s since we’re still rinsing out grossness on top of the other issues since he already has known ENT problems. The dermatologist will most likely be doing some pretty extensive patch testing while we are there. We are also seeing nutrition as well at some point in the next few days to see if we can find any preservative that Jonah has eaten or come in contact with that would cause any of these issues.

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.