Leo's surgeries are next week
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Lewis/Laczko family
What I keep saying is that this surgery experience is the one big thing, the massively difficult hurdle, and after this, it's all about Leo's development. It's possible his brain will start seizing again in the future, but this surgery will give him the best shot at eliminating seizures. Once we're home and he's recovered, we'll start PT and OT twice a week each, and we're hoping his developmental and speech therapists will work with him at a child care facility.
What's next: We go back to LA for what we hope is the third and final time next week. Leo will have an intracranial EEG on Monday, during which the neurosurgeon will use robots to make a bunch of tiny incisions and place electrodes directly onto his brain. The neurology team will aggressively wean him off his anti-seizure meds with the goal of capturing seizure activity on the EEG. Even after they get the information they want, Leo will stay in PICU until his next procedure: either a frontal lobectomy (also called a resection) or a hemispherectomy.
We're hoping for the former but prepared for the latter. What we weren't prepared for was them shaving his head. For girls, they said, they're usually thoughtful and conservative about the hair they remove. For boys, they typically lop it all off. It's the smallest of potatoes, I know, but our boy has long blond hair, and seeing him without any hair will make him look like a sick patient, like it's real. My heart hurts.
The main surgery — either the resection or hemispherectomy — is scheduled for Friday but could be bumped into the next week depending on if they get the info they want in time; the neurology team conferences on Wednesdays.
Two hiccups:
What's next: We go back to LA for what we hope is the third and final time next week. Leo will have an intracranial EEG on Monday, during which the neurosurgeon will use robots to make a bunch of tiny incisions and place electrodes directly onto his brain. The neurology team will aggressively wean him off his anti-seizure meds with the goal of capturing seizure activity on the EEG. Even after they get the information they want, Leo will stay in PICU until his next procedure: either a frontal lobectomy (also called a resection) or a hemispherectomy.
We're hoping for the former but prepared for the latter. What we weren't prepared for was them shaving his head. For girls, they said, they're usually thoughtful and conservative about the hair they remove. For boys, they typically lop it all off. It's the smallest of potatoes, I know, but our boy has long blond hair, and seeing him without any hair will make him look like a sick patient, like it's real. My heart hurts.
The main surgery — either the resection or hemispherectomy — is scheduled for Friday but could be bumped into the next week depending on if they get the info they want in time; the neurology team conferences on Wednesdays.
Two hiccups:
- PICU only has space for one adult to stay with Leo. Brian and I plan to alternate nights at a hotel, which we've reserved for three weeks.
- Brian, Leo and I did mouth swabs for a genetics test a few months ago, at UCLA's request. There was a lengthy back-and-forth with Leo's health insurance, then once the lab processed our tests, it turns out they didn't get enough DNA. It's too late now to redo it, and UCLA said it isn't worth delaying surgery, though they'd hoped to learn more about how Leo developed polymicrogyria (PMG) as well as if he has a metabolic issue. Instead, they'll take a sample of brain tissue during his second procedure, from the section of the brain that's disconnected.
The good stuff (because there's a lot to be grateful for):
- Leo crawls, pulls to stand and cruises. His gross motor skills continue to progress, on his own time.
- He says "mama," "bye-bye" and "uh" (up). He signs for "more" and "all done," nods for "yes" and shakes his head for "no."
- He'll eat everything except bell peppers and strawberries. He particularly favors watermelon and carbs.
- He likes splashing in the bath, closing doors, dumping out snack bowls, chasing after someone who's crawling and turning light switches on and off.
- The only "toys" he cares about right now are books. He wants to look through them on his own and be read to.
- He wants to be outside all the time, despite the Nashville heat.
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Susan & Brian Laczko
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