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 . . .
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!”
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.
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.
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.
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.
(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.