It was pretty impossible to blog last night, so you’re getting a 2 for 1 tonight.

We started off Friday with a drive out to Littleton to see a dermatologist. She works in partnership with National Jewish. She was just as helpful as every other pediatric dermatologist has ever been. Yes his skin is rough, yes he has eczema, yes there are other weird things that go with it, but she didn’t think it was psoriasis yet, and she didn’t know what else it could be that would tie all of it together. I am pretty confident….ok completely confident…she could tell how irritated I was when I left. She didn’t think that a skin biopsy would be beneficial, and where part of me was glad Jonah didn’t have to go through that, part of me just wanted her to look at it anyway. I talked to our Dr. Perry on the way back and I’m pretty sure I was irritated enough that I even snapped at him.

We got back to the hospital, wet wrapped Jonah and got ready for our 2 o’clock team meeting. Right about that time, my phone rang with the scheduling number from the partner hospital. We somehow managed to get Jonah’s sleep study not only scheduled, but scheduled with 2 dates to choose from. We chose to go ahead and do it last night so it was done and over with and they would be able to hopefully get results back before we went back to Houston.
We had our team meeting at 2 with 2 of our doctors and the psychologist. The upside is that the psychologist definitely thinks Jonah has some hyperactive tendencies, but thinks they are disorder/sleep related and not ADHD because of how easy he is to correct. She also said that he was “truly delightful”. She may say that to everyone, but even if she does, I still appreciate the compliment.

We also made a plan for next week. We will be doing a food challenge with wheat to see if we can maybe add that back in to his diet. More importantly, we will be doing an antibiotic challenge with Clindamycin and with Keflex. Hopefully he will pass at least one of those. We are running out of antibiotics to use on him and adding back in even one of those would make life easier. Penicillin is just totally out. We’ve tried that one before and he continues to have reactions to drugs that are barely related to it, so it’s a done deal. He will get patches put on on Monday and they will stay for a few days and will then be read on Thursday.
At this point, they still don’t know what is causing the issue, but they have a pretty decent theory that I thought was completely ridiculous when they brought it up (twice now) but after I looked at it some more, I think they are probably onto something. He has tested positive to nickel on a patch testing before. We have tried to keep him away from most metals, but didn’t really pay much attention to it. Apparently nickel is also found in a WHOLE lot of the foods he eats (lettuce, spinach, nuts, apples, citrus, fish etc). It’s a naturally occurring element in the soil. It is not common for this skin allergy to be affected by diet, but it has happened. We are also meeting with a dietician this week to work on switching his diet away from foods high in nickel.

Jonah had his sleep study last night.  He started snoring almost immediately. That can’t be a super good sign. We have already had his tonsils and adenoids out, so I’m not really sure if we have any other options other then a CPAP machine. We are meeting with ENT on Monday and I’m sure we will be speaking with our own ENT when we get home if there are any other solutions. He has teeny tiny sinuses and ear canals and everything else, so it makes sense that there isn’t a whole lot of space for air back there. It’s frustrating none-the-less for him.

We also found an Udi’s cafe on the way home from NJH. They are the company that makes the gluten free bread we buy. Jonah LOVED finding some non-itchy pizza and he and Jason devoured a pizza and a half between them.

When we got home Jonah had a package at the front desk from a friend that we used to work with almost 10 years ago and his wife (Everett and Susan). He LOVED the anatomy book (I’m telling you, this kid is going to be a doctor when he grows up) and cars. We have had so so many people who have helped us get here and on the quest for relief for Jonah. I am terrible at letting people do anything for me and just not taking care of it myself. I am what you would call…stubborn. There, I said it, and I might even say it again later. It’s genetic, if you’ve met my grandparents, you understand. I am so thankful for everyone who has rallied around us, and mostly around Jonah. When he is at a point that he is aware that sometimes he looks different then others on anything from his skin, to his missing two front teeth, I am so thankful that I can point to everyone around him and without a doubt, he knows that he is loved. I’m not sure what it is about this boy that makes him a friend to everyone, but I am so thankful that it is a quality that he has. He’s some kind of special.