We got a really encouraging email from Felix’s doctor in LA a few weeks ago. His most recent blood tests indicate that he’s right on track for the trial — he’s almost exactly in the average range for this point in time post-transplant. His lymphocyte counts are still trending down, but that’s to be expected. They should pick up in a month or so.
Our doctor sent an attachment of the lab results, which are crazy science-fictiony charts which make almost no sense to me, but one part stood out as exciting: enzyme activity.
If you will remember, Felix was born without a functioning immune system because his body couldn’t make the enzyme ADA, so he was put on bovine ADA injections as a temporary solution. We stopped giving Felix enzyme injections a month after gene therapy. This was two months ago, so if there’s enzyme activity going on in his body now, it’s all coming from his own cells. As our doctor explained, this shows that “the ADA gene engineered stem cells have engrafted and are making ADA enzyme.”
Doesn’t that sound insane? The engineered stem cells in Felix’s body are starting to do what his body couldn’t do naturally.
Our doctor summarized the results this way: “All good and suggesting he will do well.”
That’s all the parent of a medically-fragile child wants to hear.
We have been feeling so much more at ease since then.
The last time we checked his CMV levels, they were still in the undetectable range, which is amazing and wonderful. His t-cells (which fight viruses like CMV) have already dropped substantially but still seem to be able to keep the CMV under control. We still have a couple more weeks before we’ll be out of the woods, but we’re so encouraged by how well he’s done so far. None of the doctors knew what to expect with the CMV, and Felix is proving that he’s a fighter.
And possibly that prayer has power.
As for Felix’s development . . . at eleven months he’s still not sitting up on his own or crawling. I was losing my mind with worry so I finally contacted a local chiropractor who specializes in infant milestone development. He actually came to our house and gowned up to see Felix.
He basically told me, in much nicer words, “Quit worrying. He’s fine.” He confirmed that there’s nothing neurologically wrong. His spine and hips look perfectly good, too. His shoulders are just underdeveloped from lack of “experience” (his word), thanks to the extended hospitalization. He just needs time and practice.
I let out a huuuuuuuuuge breath of relief when he said that Felix’s slumped shoulders were also the reason for his constant rocking back and forth. He said kids with that problem always do that — it feels good, because it’s the only form of locomotion they can achieve.
The chiropractor also basically explained that the reason Felix isn’t sitting at this point is because he doesn’t want to. He never said it in so many words, but I gathered that the Exersaucer might have been partly to blame. Once a kid gets a taste for standing (artificially), he loses interest in sitting and lacks the motivation to work for it. I have noticed that when I try to sit Felix up he seems to almost intentionally flop over. “No thanks, Mom. Too much work.”
The chiropractor gave us some exercises to practice with him to get him moving in the right direction, but overall felt completely confident that Felix will get there in his own sweet time.
He even had some thoughts on Felix’s lack of babbling — He said Felix “vocalizes” just fine for his age. He suggested that the lack of babbling probably stemmed from a general lack of oral stimulation. That makes sense since he was tube-fed for so many months. He hasn’t had much chance to put toys or food in his mouth, either, because everything has to be so sterile. And he couldn’t see our mouths move for 6 out of 11 months. Again — with time he should catch up.
Thanks again for your prayers and support!