Update: Five Months After Gene Therapy

Ben and Felix(^An opportunity to show off the hats I knitted for my boys^)

This last month has been a big one. We just passed the one-year anniversary of Felix’s diagnosis and hospital admittance, which I am still carefully blocking from my mind. A lot of new stuff has entered our lives. So many feelings, so much change, so much positive momentum. So much Lydia!

Allow me elaborate . . .

Lab Results

We got wonderful news from Felix’s last big blood draw last month — his T-cells are on their way up! T-cells don’t often start climbing so soon after gene therapy, but we’re already seeing a rise. His next test will be in the next week or two, and we can only expect it to be even higher.

We are so thrilled. Gene therapy is working! He’s starting to build up an immune system.

I’ve started smooching him on the cheeks. What a delight! Those round, squishy little cheeks have been begging to be kissed for the last year, and I finally get to do it! A whole year without kissing my baby . . . I didn’t think I’d make it. But I did it. And the reward is heavenly.

(I’m a huge baby kisser. The genetics doctor who first saw us about Felix’s diagnosis said she’d never seen a mother kiss her baby so much.)

Isolation and Lydia

We reached another huge milestone this month: Lydia moved back in full-time. For nine months we only got to see our daughter on weekends; for the last three months we’ve had her over more and more.

The first time Lydia realized she was having three “sleepovers” at our house in a row her eyes shone. “It’s like I’m living here!” she said.

Yes, baby girl. You are living here.

Last week my mom brought the last of her clothes and bedding home. This is her home again. We finally feel complete.

We’ve also been allowing Lydia and Felix to interact with one another more and more — in part because of Felix’s improving immune system, and in part because of Lydia’s increased isolation. Since she’s almost always with us now, there’s little chance of her catching anything. She doesn’t go to the grocery store, or church, or play groups. We even had to turn down a birthday party invitation.

(We’re also allowing more contact because she’s older now. She’s a full year older than she was when Felix was first diagnosed. She’s much more responsible. She now keeps a watchful eye on us to make sure we’re sanitizing our hands enough!)

A few weeks ago Lydia saw me editing a photo of Felix on the computer. She climbed up onto the desk and excitedly stroked the screen, saying, “I’m touching him! I’m touching him!”

computer

The poor girl has been separated from her baby brother long enough.

Until recently, we pretty much prohibited Lydia from crossing into Felix’s territory at all; now she crosses the line freely (she just has to sanitize her hands first). She plays with his toys and reads his books and strokes his head.playing

Watching them interact makes my heart want to explode. They were completely separated for most of his infancy, and when Lydia finally did get to see him we were all, “Don’t touch! Don’t cough! Don’t sneeze! Not too close! Wash your hands! Wash your hands again!” She woke up in the night crying, having nightmares about accidentally making him sick and causing him to die.

I worried she would always resent him.

So far, I only see affection. (And sometimes regular big-sister annoyance.) It’s so sweet to see her laugh and tenderly caress his face, and to have him reach back and smile.

siblings

Between infertility and Felix’s long hospitalization, I had to wait more than three years to finally witness Lydia enjoying the company of a sibling. I don’t want to take it for granted for a second.

Having Lydia at home full-time makes life super-busy, though. She’s always been a SUPER-intense person, and that hasn’t changed a bit. She easily eats up three times more of our energy than Felix does. (She never stops moving/jumping/yelling/shrieking/arguing/demanding/questioning. Ever.) Between her constant demands, Felix’s normal baby needs, his therapy and his appointments (more below), I have almost zero time for blogging.

Felix’s Therapy

This month Felix finally started physiotherapy, occupational therapy, and speech therapy. I’m really happy that he’s finally getting the support he needs, but it has been overwhelming.

The first appointment with physio and speech lasted almost three hours, and focused mostly on what he wasn’t doing yet. During that time I learned Felix would need leg braces and a walker to correct his feet (which have curled in from all those months he spent in bed rather than on his feet), and that he likely wouldn’t be walking before his second birthday. The speech therapist seemed befuddled by Felix’s complete lack of babbling. It was very disheartening.

But since then Felix has made noticeable progress in almost every respect, which is exciting; and we’ve switched to focusing on what he has been achieving. And I’m getting used to the leg braces, just as I’ve gotten used to bottle-feeding, the central line, and daily antibiotics. This is just our life now.felix playing

(Look at his sitting like a big boy!!)

The therapists all keep reminding me that Felix didn’t have a normal infancy, and there’s no reason to believe he won’t eventually catch up.

Thankfully, the therapists all come into our home, since Felix still can’t go out into public. But with three different appointments a week, plus all the exercises I’m supposed to do with him every day, I feel like it’s all we do anymore.

Good thing we can’t go anywhere anyway!

Overall, I’d say we are all feeling very, very happy. We’re thrilled to all be living together again as a family. We’re hopeful about Felix’s progress and health.

Every moment we spend together is a gift.

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Comments

  1. Wow! Wow! Wow! This is so amazing. I’m so happy for you and your family. Praise God!

  2. This post made me cry happy tears for you! It’s so thrilling to see photos of Lydia and Felix just loving each others’ company. What a gift. So wonderful to see him doing so well!

  3. Such a wonderful post to read! Yay for Lydia & Felix (and their parents, of course)!!! Great job persevering and believing, Quiring family!!

  4. So so happy to hear all this good news, most of all that Lydia is back full time with you all!! That is so wonderful and I am just thrilled that you get to be together all the time. xxx
    Fiona Lynne recently posted..When you stop trying to unravel it allMy Profile

  5. Such wonderful news and I love those sweet sibling pictures ♡

  6. I am so happy. Those sibling pictures remind me of the ones you have before he was diagnosed. What a beautiful finish to the story. Together again, the way it was meant to be. And praising God with you for each gift, each day you have together.

  7. All such hopeful news and they are darling together!

  8. My eyes misted up every time you quoted, Lydia. I am so happy for you that she is HOME and that after such a long wait, she is enjoying time with her brother.

    I’m listening to the “Rain for Roots” children’s advent CD as I type. There is a song on it that always makes me cry with the refrain, “It’s hard to wait.” I’ve never been a situation quite like yours, but oh boy, it sure can be hard to wait in our busy, frantic world. What a gift to see that some of the things you have waited for so long are finally happening! The Lord is wonderful! Strange and beyond our comprehension sometimes, yet full of grace for the waiting.

  9. Love love love this update! Lydia’s non stop chitter chatter may just become your blessing in disguise as it could encourage Felix to start talking back to her hehe :)
    Last week when Lydia was over at our house she panicked when she realized she had forgotten her bottle of hand sanitizer! I assured here I too had a bottle she could use and we would all make sure we went and washed our hands regularly and didn’t put any toys close to our mouths. She accepted and seemed relieved. It made me smile :)

  10. PepperReed says:

    YAY!! What a Blessing to have your Lydia back with you full time and I’m so Thankful that Felix is on the mend. Keep pace, Mama! You can do it! Many continued prayers for your family.

  11. Hallelujah! Happy tears definitely happening over here. =’D
    I just wanted to say that even though you will always remember everything that Felix has gone through, and that is absolutely horrible and I’m sorry you have to deal with that, one good thing to think about is that he won’t remember any of this. He’s going to grow up and be a happy, healthy boy and never remember being sick. Maybe that brings you some comfort. I’m so glad your family is doing well. <3
    Heather recently posted..Milky MonsterMy Profile

  12. Nicole A. says:

    This is all wonderful news. SO happy for you and all the progress being made. Enjoy every moment!

  13. Alice Connor says:

    I don’t even know you but have been following your blog for a couple years now. I know in my own mom-ness I often feel like a shit mom. But we aren’t. We are pretty damn decent. So, from someone who doesn’t know you really, know that you’re a good mom. And your kids are beautiful and all manner of things shall be well.

  14. Yes! Thank the Lord. My church and myself have been praying for this little boy. So Thankful that you get to be a family again. I pray that Felix keeps improving and beats all the odds.

  15. This is the best. I’m so happy for all of you. Hallelujah!

  16. Ahh! Kisses! That is the one bit of news I’ve been waiting for, for you to be able to kiss your son again. It just fills me with joy. Praise God for all this good news.

  17. This makes me so happy:) Continued prayers.

  18. kisses! that says it all! i’m a huge baby/toddler/now little kid kisser as well. i can tell by how much sam kisses all his friends….i probably need to tone it down a bit!
    these are all great things!
    alison recently posted..Up, up and…outta hereMy Profile

  19. YAAAAAAAaaaaAAAAAAAAAaaaaaaaaaaaAAAAAAAAYYY!!!!! Oh, this is wonderful news! So much joy! I am just thrilled for you and your family. The pictures of your two children together (!) are just the sweetest thing.)

    Also, can I just say those are the cutest leg braces I’ve ever seen? The technology these days!

  20. What a wonderful surprise and delight to see Lydia and her baby bro together! Fantastic!

  21. Kathleen, what a life you are all experiencing together! I join those who have been praying for your family during this journey. God will sustain you all.

    You may already know about this but Vitamin D therapy (with a Vitamin D lamp) does WONDERS for the immune system. I have not had a single cold in the three years since I began using my lamp. I suggest it for the whole family to keep Felix’s exposure to cold and flu germs to a minimum. They are available on Amazon.

  22. Keeping Lydia from other children and not letting her immune system work itself out in the first years of life could have a negative and lasting impact on her health. I urge you to read scientific research on letting children’s immune systems get strengthened by letting them interact w other kids.
    http://archpedi.jamanetwork.com/article.aspx?articleid=191522

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