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.