(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.
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.
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.