Update on Felix: 6 Months After Gene Therapy

Felix 14 months

(This post is coming almost a month late. Next week it will be seven months! But better late than never.)

It’s been another big month for Felix, full of exciting milestones!

Medical Milestone: No More IV Meds

This month Felix was able to switch to oral versions of all his medications. No more IV meds!

Our doctor decided to leave the central line in for another month to make sure he handled the oral meds all right. We will probably wait until his next blood draw (you can take blood from it as well as administer drugs through it — it has saved him dozens of pokes over the last year) and then have it removed (which is a surgical procedure).

For the first time in fourteen months, Felix is not attached to a machine. It’s amazing. My boy is cordless/wireless!! When I pick him up, he’s the only thing I pick up!

Life is slowly becoming more normal.

eating - Felix 14 months

Lab Results

Felix’s lab results continue to look great. He’s actually in the lower end of the normal range of T-cells and B-cells! (Being able to grow these immune cells are the main goal of gene therapy). However, they’re still immature cells, and the doctors will continue to run cell function tests to see how well they’re working. Can they actually fight viruses/bacteria/fungi? That’s the main thing we’ll be looking at over the upcoming months.

We can see an end to isolation in the not-so-distant future. It’s so exciting.

Baby Milestones

Felix 14 months

Felix is fourteen months (i.e. one year and two months) old now.

This has been a big month for gross motor development. In the last month alone, he has learned to:

  • pull up to a high kneel
  • pull up to a stand
  • sit unassisted for long periods of time
  • stand for long periods of time while holding onto something for balance (even one-handed)
  • start to “cruise” on furniture and take his first few assisted steps.

We’re so thrilled.

He still hasn’t made much progress in fine motor and speech, but I’m hopeful that we’ll start seeing progress in these things now that he has good upper body strength. Now that he’s upright and not on his back or belly all the time, he actually has the chance to manipulate things with his hands more. I’m hoping that now that he’s mastered a few of these big-body movements, he can start to focus his energies on other things as well.

He’s still way way behind his peers, of course, which can get discouraging; but I’m so grateful he’s moving forward.

(This is how Felix felt about his first time in water. He warmed up to it.)

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Comments

  1. I just love this so much.

  2. This is just terrific. Thanks for the update. You and yours continue to be in my prayers – Lisa

  3. This is so wonderful to read! I’m so happy that Felix is doing well. Continued prayers for your beautiful family!

  4. An end to isolation in sight?! Holy cow! That IS exciting! So glad to hear all the good news and love hearing the developmental stuff. I love all the pics and videos of him on your Instagram feed; he seems like such a happy guy!

  5. Aw, I can hear your happiness in your words. This is an awesome update.

    And his smile says it all! (Plus he looks EXACTLY like Lydia when he smiles.)

  6. Oh my goodness!! He’s HUGE!!! And so beautiful and smiley–the picture in the crib just says it all. You can see the joy in his face.

    So glad for all this good news–you still have all our prayers.

  7. Melanie M. says:

    Ignore me if this is rude to you, but what is the necklace Felix is wearing all the time in the photos?

    • Not at all! It’s an amber necklace. Crunchy folks use them to ease teething pain (though there’s no scientific proof that it helps). We keep it on Felix because he loves to chew on it, which frees up his hands so he doesn’t always have his hands or a toy in his mouth. Each bead is knotted on separately so we feel safe letting him do that. He has never used a soother, so this is his substitute.

  8. Just getting caught up. (I don’t spend much time in the blogosphere anymore). I’m SO GLAD things are going well with Felix! I hope things continue on their forward course.

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