It’s been a loooooong two weeks! We are definitely ready to head home. I’m not sure how long it will take Jonah to get used to sleeping in his own room again, but I’m pretty sure it will take me about 2 minutes to re-adjust.

As far as diagnostics go…we really didn’t find out very much on what is causing Jonah’s issues. We know the nickel is a probability and he does have asthma that we didn’t know about, but other then that, we really don’t have any other answers. I had a hard hard time hearing that in the final summary meeting. After talking to Dr. Perry, I feel better about us not having a specific diagnosis. He reassured me (after lots of tears from me) that if anyone has the research to figure this out (if it’s just an allergy/immunology thing), that NJH would be the ones to do it and that he wasn’t giving up on looking and researching either. There has to be a correlation between all of Jonah’s weirdness that just hasn’t clicked in yet. None of them disagreed that there is an issue, they just don’t have the ability to figure it out yet. I felt very very confident in every doctor Jonah saw and felt like all of them had his best interest in mind in some way shape or form. They did take extra vials of blood for them to continue looking at. I don’t feel like there’s a huge likelihood that my phone will ring in a few weeks with some sort of super insightful information, but if something clicks in one day, it’s there for them to test.

Here are the positives of what we got out of this trip. Jonah’s skin looks normal. He still has a few very very tiny spots of dry skin, but overall, he looks totally normal. He’s not itching constantly. He does still itch when he gets nervous or stressed, but nothing compared to what he was. We got reassurance that emotionally, he is doing way way better then could be expected. He does have some tendencies towards hyperactivity in the afternoon, but nothing anywhere close to even encouraging medication. He is a “delightful child” who won hearts everywhere we went. He is off steroid creams. Let me repeat. He is OFF steroid creams. This doesn’t mean that he will never need them again, but for the first week of his life post 2 months old, he hasn’t had a drop of steroid in/on him anywhere. We also know that because of the care and concern our doctor has had for him over the long term and the way he has always dosed his medication, he has no long term side effects from having been on them so much. We also know that our doctor, who we trusted was a good doctor because he is extremely intelligent, well trained, and most importantly really loves my kid is in fact an awesome doctor medically and has done a great job keeping Jonah as moderated as possible without the intense intervention he’s had here as per some of the greatest doctors in the country/world. He will continue to be Jonah’s doctor for as long as he will have us. We have a new diet plan in place for Jonah and the people around us to help it happen. We will try it for 4-6 months (it is supposed to take 1-3 months to show any effect at all) and if it doesn’t work, we will try something different…again.

I am nervous and I am scared. Jonah knows what healthy feels like now. I don’t want him to ever forget it again. I want him to know wellness for longer then a week at a time. I want him to be comfortable. It all happened here in this nice safe bubble, but tomorrow we leave this bubble with his nurses and a dietician and Dr. Lanser (his favorite person here) and Dr. Leung (who is the single smartest person I have ever met) and most importantly his new friends who are kids who know what it’s like to not touch other people’s food or to itch all of the time or to look at each other while covered in mummy like clothes and know that they’re not even going to ask you what’s wrong with you. It was 2 weeks filled with uncomfortable tests and wraps and all sorts of other things, but it was also two weeks full of safety. if something happened, they were all over any spot with a plan to take care of it. Please continue to pray that we will be able to maintain this at home as well, if not better then it has been here.