Today was  whole lot of mentally and emotionally exhausting stuff. We did a lot of whole kid stuff with Jonah today and looked into how the chronic illness is affecting him as a little person. The long and short of it…he’s doing extremely well considering everything. He did art therapy, behavioral studies, and met with the child physchiatrist and did a bit of ADHD testing. Be shocked. ADHD is confirmed completely and without a doubt. He does have some fears and trepidation’s about his skin and the way others see him. He is big enough and mature enough to notice that he is different, but his responses in dealing with it are extremely appropriate and gracious. He’s amazing.payday loan

The child psychiatrist had some suggestions on maybe adding a medication for days when he needs to be hyper focused, but for the biggest part of things, he’s happy with the medication he’s on and with the low dose that our doctor has him on as well. He is also a holistic medicine practitioner and fully understands my desire to not overmedicate at all ever, but agreed that we were at a quality of life issue for Jonah before, especially considering that scratching is one of his fidgets and that is a problem for him.

One of the biggest questions that I have had and will continue to have is the effect of the divorce on Jonah and how he handles it. He in true Jonah fashion has handled that as well as could be hoped for as well. It’s been a lot of transition for him in the last 6 months with that too in his dad moving from across the street, and in Jen and Jase both getting added to his life in the same time period. He is secure in the fact that he is so so loved by all 4 of us and is also very aware of both his dads and my own giftings and shortcomings. This kid is wise beyond his years for sure.

Yesterday also included a Dexa scan to check on his bone density and verify that he doesn’t have any long term damage from high levels of steroid use (2 broken arms in a year tends to make you ask questions like that). I don’t anticipate anything more than him just being my kid and accident prone, but just in case…

Last night when we got back to the Ronald McDonald house, we were gifted some pretty fantastic tickets to the Nuggets basketball game. It was the first time either of us had been to an NBA game…and we might both be a little bit hooked (much to the delight of my favorite basketball fan). It was a late night, but a ton of fun. I’m definitely glad we went.

Today, Jonah and I will be participating in a research study, more skin care and wet wraps (he’s already looking SO much better) and final meetings with everyone. We will also get a new care plan for both school and home and future testing instructions.

So I knew that in all reality we’d have to come back. I wanted to believe that we had found a magic fix and eczema was a word I wouldn’t have to know so intimately ever again. I had big dreams that the disease this disease that is so hugely misunderstand because literally everyone knows someone with eczema…and almost all of them have it “really bad” with an itchy spot between both knees. The reality is that even when I don’t realize it… this disease runs our life. In the last 6 months, it has gotten progressively more present again. After a staph infection about a month ago, I realized it was definitely time to come see Jonah’s people. We haven’t been here in 4 years…and some things have changed…but some things have definitely stayed the same.

We got into Denver at 12:00 last night and by the time we got the rental car and got to Ronald Mcdonald…it was 1:00 am. We were in bed and asleep by 1:30 and back up at 7:00 to be at National Jewish by 8:00. It’s been a long long day with a short short night. When we got here, we met our PA who is working with the wonderful and amazing Dr. Lanser. Her name is Alex and she’s really good with Jonah. We sat down and met with she and Dr. Lanser (so so many hugs for him from Jonah) and made a game plan for the day. We had a full schedule with Allergy, Dermatology and Immunology all on board along with 2 sets of soak and seal wet wraps. I. Am. Exhausted.

Allergy ran new testing. We still get zero positives (that’s Jonah’s 10th set of negative allergy tests in case anyone was keeping track). Dermatology confirmed that we still have eczema and then we talked through some options regarding some immunosuppressants (no.), staying on topical steroids, possible UV therapy, and even a new drug that is in trial with kids right now, already approved for adults and teens, and having fantastic results. It’s CRAZY expensive though (27k/yr if insurance decides not to pick up the cost). Lots of options to work through in the next few days that offer some additional long term plans.

Immunology is where the magic happened today. Dr Gelfand managed to see Jonah and all of Jonah’s symptoms as a whole child instead of as individual symptoms. We are running a full immunology panel as well as a genetics profile tomorrow. He is also running a genetic panel on me. He thinks the genetics research that has happened in the last 4-5 years may be the key to helping us correlate all of Jonah’s symptoms into something specific. At this point, I had given up the idea of ever getting a diagnosis for Jonah and was happy with just getting a new treatment plan…at this point though…I am cautiously optimistic that a diagnosis may come…and with a diagnosis comes a cure.

We’re staying inpatient tonight for them to monitor Jonah’s sleep and get one more good solid wet wrap in for the day. We will be seeing all of the guys from today again tomorrow and will add a sleep specialist and pediatric behavioral health. It’s a crazy busy 4 days.