Update on Felix: Ten Months After Gene Therapy

playing with seashell

We reached a couple of really big and exciting milestones with Felix in the last few months. What an exciting time we’re living!

No More Central Line!

central line dressing change

This was a biggie. Felix has had a central line in his chest since he was only two months old, and was on continuous IV for the first fourteen months of his life. The central line stayed in for one more blood draw, and then it took a while to organize the surgery.

Last month, at the age of seventeen months, he finally had the line removed. It had been a part of his body for almost his entire life. It feels amazing to be able to see his whole chest. (It was always covered in a big dressing. His right nipple hadn’t seen the light of day since he was a newborn.)

No more worries about the line getting yanked; no more worries about getting a fatal line infection; no more stressful weekly dressing changes. (Just imagine holding down a screaming toddler, peeling a big bandage off his chest, sterilizing the whole area, and then replacing the bandage, all while trying to maintain a completely sterile environment and making sure the line doesn’t get yanked out of his chest. Every week of his life.)

It felt so wonderful to get rid of all the medical supplies related to the central line. Get out of our house!

medical supplies

Hooray! Our boy is 100% cordless!

no more central line!

(The one downside, of course, is taking blood. He now has to get all blood taken the regular way — via needles in his skin. His last blood draw took three pokes and three adults holding him down. It’s heartbreaking, but honestly, nothing compared to a lot of the suffering he’s endured. I’ll take that over shoving a tube down his nose any day.)

No more Antibiotics!

Felix has been on antibiotics since his diagnosis at two weeks old, to protect him from infection in the absence of a working immune system. His cell counts are finally high enough that his doctors felt comfortable taking him off of them.

He’s down to only one med now — just an oral antiviral, just to make absolute sure his CMV doesn’t return. (It’s probably unnecessary but our doctors don’t want to take any chances, since he’s the only child in the trial with CMV). I cannot wait for the day we can take him off of that one, too!

And here’s the best, most exciting milestone of all:

An End to Isolation!

stones

Felix is finally allowed to do just about anything. We can take him out to friends’ houses, take him into restaurants, take him to the grocery store, take him to the zoo, etc.

IT’S SO INCREDIBLE TO SEE FELIX OUT IN THE WORLD!!

I get a thrill every time I see him laying out on the grass, looking up at the trees swaying in the wind. It fills my heart with joy to see him giggle at the sight of other kids playing in the same room as him.

At long last, Felix finally has the rich learning environment he deserves. He gets to see people of all ages talking to one another, gets to crawl around on grass and tear apart flowers with his fingers. He gets to feel different ambient temperatures and smell different aromas and move around on different textures. He can play freely in water and sink his hands into containers of dry rice and beans. He’s seen dogs and chickens and cows.

sensory table

It never gets old. Just one year ago he’d never seen a person’s face uncovered and wasn’t even allowed to see his sister. He’d only seen two rooms in his life: the hospital room in which he’d spent his first five months, and then our living room, which was scrupulously cleaned and sanitized every day.

We still have to be a little careful — he won’t be going to the church nursery or Early Years center any time soon. We’re supposed to avoid big crowds and wash everyone’s hands regularly when we’re out. But we’re pretty close to normal life now, and I hope I never take it for granted.

Oh, and there was one more milestone I almost forgot, because it was so unpleasant:

Beating His First Big Virus

Our whole family (and extended family) got hit with a nasty norovirus. We were all vomiting and experiencing severe “digestive distress” (if you catch my drift) for weeks.

Felix got it too. And he beat it.

It took him longer, of course. He was sick for almost three weeks. I pretty much held him through the whole thing.  He didn’t eat a bite of solid food the entire time, and I think he lost some weight.

BUT HE DID IT. He has enough of an immune system that he was able to overcome it.

A year ago, he would have died. This year, it just meant a really sucky couple of weeks.

Praise God!

We are so grateful to have our boy.

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Comments

  1. Hooray! Best news ever. What a difference a year makes. GOOOO FELIX!

  2. Gracious, this made me tear up. Such a joy to see Felix thriving and healthy. Much love to your whole family, Kathleen. xoxoxoxoxoxo
    Beth recently posted..Comment on How I Use Mind Mapping to Help Declutter My Brain by Thinking on Paper | Educating for LifeMy Profile

  3. This is so wonderful to read!! So incredibly special to see him finally getting to experience everything his big sister has. And what a weight off your own shoulders. xxx

  4. Elyse B. says:

    YAAAAAAAAAAAAAAAAAAAAAYYYYY!!!! Today’s my birthday, and I can’t imagine getting better birthday news!!! :D :D :D

    Praying for you with love and joy.

  5. Incredible. INCREDIBLE!!!! So happy to read this post.

  6. Maria Unger says:

    I loved reading every word of this update! Thank you so much for not keeping the good news to yourself Kathy. It’s absolutely A-MAZING!! Thank you Jesus.

  7. PepperReed says:

    Hooray!!! So very happy and thankful that Felix and your family are settling into a good routine.

  8. I have followed your journey and I’m PRAISING GOD with you for this miracle! Enjoy your summer!:)

  9. This is all so awesome.

  10. Thank you Jesus! I am so so happy for you Kathleen! And Felix too… What a big boy he is! We’re joining you in praising God over here…
    Sara recently posted..Seeing Red…My Profile

  11. What a wonderful update. I am so happy to hear about your joy in every day with your family. May God continue to richly bless you and yours

  12. Coriander says:

    What a thrill! What good times you are having! The freedom! Grass and open spaces and people and animals?! His body fought it off! And cordless?! Woohoo! Thanks and praise to God, for His help and comfort in times of trouble! And for the happy times! What a handsome fellow he’s growing to be! Those cheeks, and that hair! I’m so happy for you all!

  13. I’m crying. This is all so wonderful. What amazing news! Go Felix go! Praise God from whom all blessings flow! Happy dance! Huzzah! I will dedicate a hymn of praise to Felix today, because what joy!

  14. This just fills me with so much joy. So thankful for the way the Lord has worked and is working in Felix! Happy day!!

  15. Laura W says:

    Yay! Yay! Yay! Rejoicing with you!

  16. This is just miraculous and I LOVE it. Yay Felix! Yay gene therapy!

  17. Just as all the other comments said, hallelujah!!! Happy tears reading this. Thank you Jesus. <3

  18. This makes my month! Way to go, Felix!

  19. So so good. Thanks for sharing. We are all so happy for all of you.

  20. how wonderful to read! what a little mini ben. enjoy all that gardening :)
    alison recently posted..We had a daughterMy Profile

  21. Nicola Pryor says:

    This post makes me so joyful. Xxx

  22. Julie S says:

    I just recently found your blog and have read the pain and trials your family and this little guy is going through. I am thrilled for you and your family!!!! Both of my rainbow daughters are similar ages to your kids and we will be homeschooling too. <3

  23. Yes! What a great update! I’m so glad to hear how things are going. Even that he beat the Borobudur on his own, as awful as those few weeks were I’m sure, is AMAZING!
    Michele recently posted..Blog Deleted for NowMy Profile

  24. Wow Im not an emotional person but this just moved me so much. I came to your site looking for the piece you had on minimalism but this story of Felix had me clicking to read more and more! I have a 2 young boys myself and I often think about if I am spiritually mature enough to handle my boys being ill. I know no one is ready but GOD uses that move through us! Your honest emotions from despair to hope and enduring faith is a true inspiration! GOD Bless you for using this platform to bless others! GOD BLESS!

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