Update on Felix: 8 Months After Gene Therapy

Felix outside, 8 months after gene therapy

Felix is sixteen months old (i.e. one year and four months), and eight months post-gene therapy.

Last month was the first month Felix didn’t need to go in for lab work (until now, he’s had to get blood work done every month; after six months post-GT it changed to only every other month — yay!) so I didn’t have much for updates.

We haven’t gotten the results from this last blood draw yet, but we anticipate that he should be close to the normal ranges for most, if not all of, his cell counts.

We continue to hit exciting new milestones all the time!

Medical Milestone: No More Infusions!

ivigPlaying with his bravery beads and having a snack during his 3-hour IVIG infusion

Since Felix’s diagnosis at two weeks old, he has had to receive a blood product once a month called IVIG (intravenous immunoglobulins), which helps fight off certain infections. It’s a three-hour-long infusion that involves constant monitoring for any negative effects. Nurses have to take his vitals (temperature, blood pressure, oxygen saturation) constantly, and it’s very uncomfortable for him. Along with blood work and other assessments — not to mention the two-hour drive each way — our clinic visits have always been exhausting, full-day events.

This week Felix had what we expect will be his LAST IVIG ever!! His body appears to be making enough antibodies on its own so that he won’t need it anymore. Woo!

He still has his central line (which is how he received his infusion), but now that he’s off of all IV meds, he’s done with IVIG, and how blood draws are down to once every other month, we are discussing having it removed in the next few weeks (a minor surgical procedure). We can’t wait! The weekly dressing changes are always stressful, and it poses a constant infection risk, so it will be good to have that gone. (It was nice for blood work, though. Taking blood from a line is soooo much easier than with a needle.)

Isolation Milestones

Slowly, slowly, Felix is being able to engage the outside world more and more. Over the last two months he has experienced the following for the first time:

  • Touching the ground! At a year and five months, Felix touched the ground for the very first time. We even let him crawl on the grass a little. We were all so totally psyched to see our SCID baby outside! If only I could have sent a picture of it to my past self when we were in the hospital for five months straight. If only I could have known this day would come!
  • Bathing in the bathtub! Until now, we gave him sponge baths since our doctor wanted us to boil all water that touched his body (and also because he was always hooked up to an IV). He got a couple of kitchen sink baths before finally graduating to the bath tub. He freaking loves the bathtub. He goes crazy splashing around in the water and cries when it’s time to come out.Felix bath
  • Visiting grandparents! He got to see Ben’s parents’ house for the first time last week, and for Easter, he will see my parents’ house. I just wanna cry thinking about it.
  • Having friends over! We’ve had friends over on three separate occasions now. We’re limiting it to families with only single children (who are fully vaccinated and confirmed to be well), but hoping to expand that soon.

Another big step: we removed the line of tape that separated Felix’s room from the rest of the house! The whole house belongs to Felix now.

(We’d been taking him into other rooms for a while now, mostly keeping the tape on the floor so visitors would know not to cross over; but we no longer have a special area designated for Felix).

At our last visit, our doctor okayed visits to parks, libraries, malls, etc, especially if we keep him in a stroller and/or sanitized cart. ACK!! I can hardly imagine Felix out in public!!!

Baby Milestones

Felix has continued to focus on his gross motor development, perfecting his skills at cruising around furniture, pulling up, squatting, sitting, etc.

playingCausing trouble, like a proper toddler

He also decided to go back and meet an old milestone he skipped: he started crawling on his hands and knees! Our occupational therapist says this should help him with his fine motor development, as it strengthens vital muscles required for these skills.

His fine motor skills and speech are still lagging, but at least they’re moving forward a little bit — his babbling is getting more sophisticated and he’s allllmost got the pincer grasp down.

All in all, though: he had about six months of his life taken from him, when he was tethered to an IV pole and stuck in a hospital bed, and he seems to be staying about five months behind his peers in all areas. So I’d say that seems pretty okay.

(I know I said that all nonchalantly but the truth is I worry about his development every hour of every day. WORRY WORRY WORRY. Some days I’m certain he has a disability; other days I’m not sure. I constantly have to remind myself that it doesn’t matter because we will adore him no matter what.)

So that’s been the last couple of months for us!

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Comments

  1. Wow! SUCH a brave little boy, and SUCH a brave Mommy! This must be so scary for you, but you seem to be looking up and staying so positive! Glad he is doing so well and has reached so many amazing mile stones! You are truly amazing and such a brave mom! I can’t imagine going through something like this, and you seem to be handling it so well! Thanks for being such an inspiration!

  2. Seeing that first photo of Felix, standing up, outside, brought such a smile to my face! Then, reading through the rest of your post, I just wanted to jump up and down and cheer! I am so thrilled for you guys!

    Have a blessed Easter

  3. PepperReed says:

    Hooray!! So very happy that Felix continues to improve and you get to integrate him back into the ‘world’ again! Have fun and Happy Spring!

  4. I love, love, love this update. Yay for parks, libraries, family and friend visits, and the outside world! Hooray for baths! Hooray for possible central line removal! So fantastic.

    I so wish you could share this update with one year ago you.

  5. So glad to read such a wonderful update! Thinking of you guys as he gets to experience spring, the outdoors, playgrounds, and family now! Lots of love and prayers for continued improvements and milestones!

  6. What a great update. I was so happy to see that photo of Felix outside!

  7. This is a WONDERFUL update!! I don’t think I ever mentioned this when Felix was born, but he came along within a couple weeks of my daughter, so naturally–following his story has been heart wrenching (especially from reading along for however long before he came along). This is good good news!!
    Brittany Cook recently posted..My Favorites // Baby EditionMy Profile

  8. I’ve been praying for Felix and your family since I heard about his diagnosis, but I haven’t been reading your blog steadily since then—sorry, but life gets in the way sometimes, you know? Anyway, seeing Felix enjoying life and learning to be an ordinary toddler is wonderful! Thanks for sharing with us!

  9. What joy fills my heart. God is good! I have been following your story since I stumbled on your blog about 1 year ago. I can only imagine the joy of feeling the ground for the first time. Makes me looks at the little things in life differently. Thank you for sharing with gut wrenching honesty about life struggles and joys. You are a blessing to my life, even if we are in different countries.

  10. It is so extremely wonderful to hear good news like this on an update about Felix. So happy for your whole family. Your world has been turned upside down, and it’s strange how strange it is when things start looking normal again.

  11. I am crying for joy! Look at his smiling face OUTSIDE! I am so so happy for you. I’ll continue to keep you guys in my prayers. <3

  12. Coriander says:

    Thanks to God for His help to you! Your little boy touched ground!? Can now explore the whole house!? Friends over?! Real baths?! What a thrilling time for you all! I am so happy for you! So many dreams coming true! Ah, what a wonderful balm to the heart to hear of your joys!

  13. Oh this is such a wonderful update! He looks like such a HAPPY little guy! I’m so happy for your family. I cannot imagine how happy you all are.
    Michele recently posted..Blog Deleted for NowMy Profile

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