I thought I’d provide an update on Felix, now that he’s two months past gene therapy.
Felix is just about ten months old. He is a huge snuggler, which I love. He’s very social and doesn’t like to be alone. He’s got three goofy teeth, he loves drinking water from a glass, and he could jump in his Exersaucer all day if we’d let him. (He got addicted to it in the hospital. We’re trying to wean him off of it.) He’s been very well since he was discharged from UCLA two months ago.
Felix still doesn’t sit up on his own yet which worries me. He’s not even close to crawling, though he can roll, pivot and turn. He’s quite behind, developmentally, in general — I’d guess he’s at about the six- or seven-month level. He doesn’t babble any consonants — he just squeals, laughs, growls, and yells. He’s just starting to put food into his mouth.
He doesn’t have an occupational therapist because we’re trying to minimize his contact with people. Our number one priority during the first six months post-gene-therapy is building up his immune system and keeping him safe.
I try to remind myself that Felix has good reason to be behind — he didn’t get much chance to develop during those six months in the hospital. He was constantly hooked up to machines, healing from surgeries and lying in bed, battling CMV. Stimulation was limited in that little white hospital room, and he couldn’t see anyone’s faces. He never saw anyone eat or talk or smile, and he rarely got to play on the floor. His toys were limited to hard plastic. His infancy was nothing like a normal baby’s — he didn’t get to go places or meet new people. He didn’t get to feel wind or smell food or pet doggies. So of course he’s behind.
But I still worry that maybe there’s something neurologically wrong. Autism runs in Ben’s family. While in the hospital the second time he started to exhibit a lot of repetitive behaviour which freaked me out — constantly rocking back and forth and rubbing his head against the bed. (That has mostly subsided since returning home. Maybe he was just losing his mind from boredom.)
I’m comforted by the fact that he is at least making progress, even if it’s slow. His body is strong and his eyes look bright. And it’s still such a blessing to watch him eat, to want and enjoy food — both bottle and solids. I had really worried if he would ever eat normally again, after all those months with the NG tube.
We still take him to the hospital two hours away ever other week for clinic visits. At these visits he mostly gets blood work done which is no biggie with the central line. We got trained to do his dressing changes (i.e. to chance the bandages on his central line, the permanent IV line in his chest), so at least we can do that in the comfort of our home whenever he’s ready. (They used to be a nightmare in the hospital.)
So far, all the data we’ve gotten from blood work has been really positive. His liver enzymes had been high without a clear reason since he was first diagnosed and have been a cause for concern; but they have slowly been coming further and further down. At his last visit they were in the completely normal range. How exciting! What a relief!! His CMV counts have been “below the level of detection” since just before gene therapy and so far have stayed that way — another huge and awesome relief.
We are still waiting for his T-cells to drop as a latent response to the chemo — that should happen in a month or two. At that point we can expect his CMV to go up again, since his main defense against the virus will be down, but hopefully not to dangerous levels. He has managed to overcome it before. If he can get through that stretch, we will be able to breathe much easier.
I’ve said before that Christmas will be sort of a benchmark for us — at that point we’ll know, more or less, whether gene therapy was successful. Some people have been under the impression that he’ll be able to live a normal life at that point. I want to clarify that if we get the go-ahead to start moving out of isolation, that only means maybe, say, his (grown-up) aunts and uncles can come visit him and hold him for the first time. Maybe we can take him to Grandma’s house. It does not mean we’ll be taking him along to the grocery store or hosting play groups. Church and birthday parties are still a long way off — maybe by next summer.
For now, he mostly stays in his isolation room on the main floor, though we take him into the kitchen for meals, and sometimes let him just sit in his high chair and watch us work. (The fact that he’s not mobile helps here.)
We’ve been having her over more and more — usually for the whole weekend. We’re even starting to keep pajamas and underwear here. It’s heavenly.
She usually stays “behind the line” (the line of tape sectioning off Felix’s isolation room), but occasionally she can sanitize her hands and come interact with her brother. She adores him and would be all over him if she could be. Interestingly, she’s totally open to the idea of having more babies in the future.
Mostly, though, she sits in the computer room and colours pictures of Elsa and asks philosophical questions about Disney’s Frozen (a movie she has seen TWICE): “Why did Elsa not want Anna to be frozen? Why did she touch her face? Why did Prince Hans want to kill Elsa?” (If you thought there was a finite number of questions one could ask about Frozen then you were mistaken.)
That about sums up our life lately.
It’s magical and terrifying and tedious and delightful all at once.