Wednesday’s infusion of subcutaneous IG was by far the best we’ve had. I didn’t have to hold JT down at all; he sat on the couch bravely and watched The Incredibles while Jodi stuck the needles in. No tears, no thrashing, no yelling. He was afraid, no doubt about it, but in his own words, “I’m getting through it.” The nurse only watched from afar and this Wednesday we’re on our own. 

The skin is still troublesome. It looks better but he’s still got bright red inflammation on his hands and arms and face and the itching is terrible, especially at night. We don’t know what to do. We keep giving him itch medicine but he itches frantically in his sleep. We don’t want to accept this but the only other alternative is steroids and those suppress his immune system. We continue to hope that his flare-ups will subside once he no longer gets the IG infusions and that time could be approaching in the spring. But waiting is hard; JT is covered in scar tissue – the scar patches now take up more surface area than his regular skin. Will these ever heal? We don’t know. One night this week, when he’d woken up itching and crying, he told me through his tears, “Daddy, it isn’t easy.” He’s right and we’re at a loss as to what to do. Our encouragement is that it’s so much better than it was – maybe one day it will be all better again. 

He’s making slow, slow progress with the feeding issues. He’s complaining more vocally about “something bothering me in my throat” and even I am slowly coming around on the G-tube idea. In fact, Jodi and JT will return to Cincinnati in ten days (January 30) to meet with the GI docs for a consultation. We had hoped that he could have the surgery during the same trip, but the hospital won’t put him on the surgery schedule until after the consult. The operation seems like a big deal to me but they do it as an outpatient procedure. I believe the main concern is how his skin will heal up around the tube after the surgery, especially given all of his skin problems.

Our working plan is to get him ready for an inpatient stay at Pittsburgh’s Children’s Institute over the summer – they told us 6-12 weeks and that’s the only time we could swing such a thing. And when the immunologists give us the green light it will be time to start looking at dentures too.

So. We have a few prayer requests: G-tube surgery, skin, eating, dentures. It seems like a lot as I write it down.

But please know this: life is very sweet. JT loves the world and delights in his life every day. He runs and plays and roughhouses and laughs and basically enjoys the heck out of himself every moment. Jodi the boys just walked in from playing on the ice at the park and you never saw a happier bunch. When I update the blog I tend to illuminate the physical and medical challenges but believe me, they are only one part of the overall picture. We’re home, we’re blessed and lucky, we’re happy. Yes, the road stretches out in front of him but we remember too: this time last year JT was literally fighting for his life. This year he’s reveling in it.

Thank you for remembering us and please keep praying that JT's healing will one day be complete.