I know, I know – it’s been way too long since I’ve updated the blog. My apologies. As a consequence of my negligence, this entry is a very long one. Before you read further, it may be a good time to get yourself a fresh cup of coffee and settle in…

Happy New Year. We sat around last night after the boys went to bed and recalled the joys and heartaches from 2007. It was a moving experience. And for all of its blessings, Jodi admitted that she wasn’t too sad to see this one go. We’re ready for a new year.

Our Christmas was wonderful in the literal sense of that word: full of wonder. As I mentioned earlier, until this year we’d spent exactly half of our Christmases in the hospital under uncertain medical circumstances. This Christmas broke the tie – now we’re 3 for 5 at home.  It was everything we’ve hoped for and the days together were sweet and fleeting. I rolled out dutifully this morning when the alarm went off to go to work but I could have used another day (or two) of simply being together here at our new home.

Some big things have happened since I last wrote. 

First, the comprehensive immune system studies…Dr. Filipovich wrote in a pre-Christmas email to us that we had “a lot to celebrate.” Overall the picture is very promising and his immune system is getting steadily stronger. His engraftment remains at 100%. We are unbelievably thankful. At the same time, there’s always mixed news. Some of his counts were a little off and his liver numbers were somewhat odd so they’re going to draw some more blood this month to check things out again. One of the doctors mentioned the possibility of something viral going on but JT has tested negative for the one they mentioned as most likely.

The subcutaneous IG at home has gone mostly well. In terms of travel and exposure, it’s a godsend. The infusion is once a week and only lasts an hour. Once it’s up and running it goes quickly and JT seems comfortable. But getting it started is another thing altogether. The last two times he’s come unglued when he sees the needles. Jodi and the nurse apply numbing cream and I watched carefully the one time I was able to be here. I really believe that the actual sticks don’t hurt him. But he’s afraid and he gets worked up to the point where they’ve had to hold him down. Not fun. The goal is for us to become proficient at administering this ourselves so next Wed the nurse comes at 5:00p.m. so that I can be here to help while Jodi inserts the needles. Obviously, this whole thing is a prayer request. Dr. Filipovich told us that it’s possible we could discontinue IG therapy this spring so hopefully the end is in sight.

In terms of his skin – it’s certainly better than it was but it’s far from good. He still has the raised angry red blotches covering most of his arms and a good deal of his face. His hands continue to develop the thick calluses. He peels all the time. We give him anti-itching meds before bed but he’s been waking up in the middle of the night crying for more. We’re still taping on the gloves. And the thing is – we don’t have any idea if this will go away when we stop IG therapy or not and nobody can tell us. It’s certainly a big quality of life issue and we’re grateful for your prayers.

And finally, the feeding update. I was able to attend JT’s therapy in Pittsburgh on Monday and we were able to ask pointed questions. “Sobering” is the word I’d use to describe the answers we received. They said it may be 2-3 years before JT is eating normally again. I guess I wasn’t prepared for this. Further, they want us to pursue surgery to insert a G-tube for feedings to go directly into the stomach. Jodi has long expected this but it freaks me out. Plus, I worry about his skin – it’s so volatile that I wonder about how it will heal around a permanent tube. However, they feel that he’s had the NG tube for longer than anyone expected and that he may have damage in his esophagus that is causing him significant pain when he swallows. They want it out. Moreover, they said that once he progresses to taking 2 ounces of Pediasure three times a day (and we’re a long way from that goal, modest as it sounds) he might benefit mightily from “inpatient therapy.” We asked for how long, anticipating a few days. The answer was six to twelve weeks. It’s intense – meals six times a day and therapy of all sorts. But I guess that kids can make real gains this way. Anyway, our plans for the summer have shifted in a big way…if we can get him ready, it looks as if we may be splitting up again – one of us with Justy in GC and one of us in the hospital in Pittsburgh with JT. Once again, please pray over this situation. We’ll do whatever is best for him and it seems like this might be the thing.

Last, and this is the grand finale of what’s turned into an epic entry – we have had contact with JT’s donor. It’s hard to know what to say about this. After all, by her free gift this woman very literally saved our son’s life. If you do nothing else, please pray that she will be blessed richly for what she’s done - for the entirely different world she’s given us, for the life that she’s given JT.

I won’t wait so long before writing again – once a week at least. Good night!