It’s crazy to think that it’s already been two months since Felix had to have surgery on his skull for craniosynostosis. At the time it felt like the worst thing that could have happened to us but now it’s faded into the background as we’ve moved to our new house, started summer vacation, and gotten used to living with a baby in a helmet. I actually forget that the top of his skull is missing sometimes until I’m washing his hair and there’s no bone there.
It’s not actually as gross as it sounds. I thought it was going to be gag-inducing that he would just be a brain with some hair on it but it really is like the soft spots babies have when they’re born, if you took all the soft spots and shoved them together into one mega spot on the top. It was a little nerve wracking to have the kids be around him before we got the helmet, since head injury seemed inevitable, but we made it through the two weeks of post-op recovery until it was time to start helmet therapy.
I don’t love the helmet. It’s clunky and since he gets sweaty in it occasionally it has a high-school-locker-room aroma that is no bueno. We wash it out with alcohol wipes every night but the trick seems to be to occasionally wipe the whole thing out with a handful of purell, rinse it with hot water, and put it out in the sun for a half hour. That’s not medical advice, mind you, since I’m pretty sure they told me not to do stuff like that, but I can’t cuddle with something that smells like a gym sock even if there’s a cute Felix underneath.
They estimated that he’ll go through four helmets over the next year but so far he’s only been in the first one. They scan him in something that looks like a big copier machine every four weeks to see how he’s progressed because his job is to grow from side to side while the helmet’s job is to keep him from getting any larger front to back. There was a huge shift right after surgery and the one month comparison was pretty crazy:
Since then he’s been shifting so slowly that I can’t really see it but the computer can pick it up on the scan. It’s hard because sometimes I get paranoid that his head is actually going back to the “bad” shape since kids have relapsed and had to redo the surgery before but he still looks much different than he did. I don’t know – I’ve always thought he’s handsome.
As for the scars themselves, he’s got some cradle cap right around one of the incisions that’s been a little stubborn but he never had an infection or any kind of irritation following surgery. The stitches dissolved on their own so we didn’t have to worry about that and the surgeon barely looked at him during follow up so I guess that isn’t something they’re losing sleep over.
We go back to see neuro and plastic in about a month and I’m secretly hoping he magically did all of his head shifting faster than any baby ever because those helmets cost us $500 out of pocket. To be fair, though, then he’d just be back to being a big soft spot out in the open so I guess I want the helmet to stick around for a little while. At least he rocks the helmet look!