Jodi joined Dr. Orange and the other NEMO families for their roundtable this afternoon: when I asked her about it she was sober. She told me it was reassuring to know that there’s a physician like Dr. Orange out there, a man who’s dedicated himself to helping kids like JT. But it was also unsettling. I guess Dr. Orange kept referring to the conference attendees as “pioneers” and referring to our children as “first generation transplants.” He meant it as a tribute but Jodi took it another way, that we’re all just kind of feeling our way in the dark here. I prefer to think of Odysseus.
Dr. Orange spoke to the GI issues too. He’s working hard to figure out why post-transplant NEMO kids have had so much trouble with the D and V. Evidently the NEMO mutation is also present in JT’s gut and this problem has not been fixed with transplant. He said this can cause recurrent bacterial and viral infections like the ones JT has already had. But it also sounded to Jodi like this was a good deal of speculation on his part…nobody knows much for sure yet about the disease process.
So that’s my secondhand news. JT’s rash is still bad but seems to be “browning down” into the scars instead of the open sores. We had dinner on the deck tonight, a picnic, but JT got a splinter and Jodi had to go after it with at needle. He was brave as usual. We’re all pretty pooped on this end, so that’s all for tonight. Have a good restful weekend.