An Update on Felix, Three Months After Gene Therapy

11 mos

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.

Development

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!

Related Posts Plugin for WordPress, Blogger...

Comments

  1. That’s so great! And it all makes very good sense :D So glad you had the chiropractor out — that is really fantastic. :D

  2. Such wonderful news! Prayer does have power.

  3. Our daughter didn’t walk until 16 months old, nor did she actually crawl until 15 months, she was simply content to be where she was, maybe we had too many hands just ready to scoop her up ( she was spoiled lol). I am glad you had someone come in to assess, it is nice to have the peace of mind everything is AOK :)

  4. PepperReed says:

    Hooray! So Thankful that Felix is continuing to improve. Many prayers still being sent (especially for Lydia to SLEEP and Mama & Papa, too!).

  5. He is absolutely gorgeous and CUTE! Enjoy those snuggles with him. So glad to hear this news!

  6. YAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!!!! All terrific news! (Isn’t it great when a medical professional tells you to stop worrying? :)

    You guys are in our thoughts and prayers every day.

  7. This is so wonderful! I’m breathing a little deeper/better as a result of reading this too :) Thank you, Lord, for hearing our prayers. (By the way, my son is 8 months old… Started army crawling at 6 months and we never put him in the exersaucer… And he too has No interest in sitting. None. So maybe the lack of interest in sitting has nothing to do with standing and everything to do with taking an active interest in everything else? :)

  8. Much thanks and many blessings. May you all continue to find grace and healing.

  9. Yes! Prayer DOES have power! And Felix has had a very different first 11 months than most babies, so it’s not surprising that he’s going to need some extra time to learn some things. Plus, there’s such a huge range of what’s “normal” anyway. Sounds like your little guy is doing just fine. =]
    Heather recently posted..Happy 11 Months Birthday, Cody!My Profile

  10. SO happy to read this update:) Go Felix!

  11. That is such great news. I think most people are way too hung up on developmental milestones. Developmental norms are just a tool. When my youngest son was hospitalized for heart problems, he had some catching up to do. But he’s doing just fine now. I wish I could say that the worry has gone away but that probabally won’t happen. I guess that’s partly what prayer is for.

  12. What a fantastic update! My kiddo is two weeks younger than Felix and I have been following your story with prayers in my heart. Go, Felix, go!

    There is nothing sweeter than hearing your baby is going well. <3 <3 <3

  13. Hey Kathleen,
    I am assuming that Felix has the support of an entire team of specialists and don’t want to step in when I’m not needed. I’m a speech pathologist and I know that there are countless ways of supporting a child’s language (babbling, first words) that are fun and will help your little man along in a positive way. I recommend a look at the Hanen Center’s website (www.hanen.org). You are welcome to contact me as well. I am in Australia, but it’s a big global world these days, so feel free. I hope it’s OK to make those suggestions. In any case, I wish you all the best. I have come across your blog a bit by accident, initially for all your wonderful sustainability ideas. The title “Becoming peculiar” made me smile! I’ve adopted your vertical folding strategy and am starting to believe I might become house trained after all!

Speak Your Mind

*

CommentLuv badge