JT had his weekly subcutaneous IG infusion at home yesterday. We scheduled it for 5:00 so that I could be here; though he’s getting better and he’s certainly a brave boy, he still gets freaked out at the last second at the sight of those needles. I had to hold him down a little which is never fun. However, Jodi drew up all of the meds and actually stuck the needles in and she did a great job. The whole thing transpired under the watchful eye of our nurse and she’ll be back next week to oversee again. Soon, I think we’ll be on our own.

His skin is still pretty bad. He itches much of the day and though the medicines help a little, he struggles to get any relief. We simply don’t know what to do – we lube him down with Aquaphor several times a day and we keep gloves on him overnight and still there’s no improvement and no one seems to have any more ideas.

We’ve floated the G-tube questions to JT’s doctors in Cincinnati but so far we haven’t heard anything. It sounds like a big deal to me, but it would also afford him an opportunity to swallow without pain. He’ll be ready for school in a year and a half and I’m starting to feel the crunch – I’d love to have him eating again and used to his dentures and everything for his first day at school. Anyway, if the Cincinnati docs agree with the therapists in Pittsburgh about the G-tube, I think it will only be a matter of scheduling.

We’ve been loving the unseasonably warm weather – Jodi’s had the boys out throwing rocks in neighborhood streams every day. On Monday I took them out to the bike trail and we saw a couple guys flying model airplanes which the boys thought was really cool. It was great to see them running around, and as the cold rain pounds us tonight the memory makes me wish for spring.

Thank you for your prayers and for sticking with us on this long road. I told Jodi last night that I’m not sure this is ever going to be “over” and that’s a bit of an adjustment. But all in all we’re grateful and blessed and very, very happy.