UCLA reached out yesterday to say our neurosurgeon wants to move Leo's surgery up by a day, to April 18. We don't know why, but we'll absolutely take it; it's (hopefully) one less day with seizures.

Sterile medical info: A hemispherectomy doesn't guarantee he'll never have seizures again. Instead, it disconnects the hemisphere with the malformation, which is the side that seizes. We're opting for a functional hemispherectomy, keeping the brain tissue inside yet disconnected, instead of an anatomical hemispherectomy, which entirely removes the hemisphere. That's our personal preference, and it's also what UCLA recommended. It's possible his seizures will migrate to the healthy side of his brain or that a connection is missed during surgery, which could mean another surgery or more seizures later on — yet presumably, with the main seizure source disconnected, any later seizures could be better controlled with medication. Essentially, we'll never feel completely out of the woods, but we expect to feel like life is no longer hanging in the balance.

Why surgery? The reason surgery is pursued in a case like Leo's is that two or more meds have already failed to squash his seizures; he's currently on three anticonvulsants given every 12 hours, and we have had to increase dosages periodically when seizures start again. At that point, surgery is the next step. Few people with hemimegalencephaly (HME) live their lives without knowing they have it. Some have occasional seizures, like when they have a fever or are going through puberty, that meds mostly control. Some babies are diagnosed by ultrasound, have a stroke in utero, or are born seizing, and in those cases, treatment is pursued right away. Leo was diagnosed at 6 months, and the younger a child is for surgery, the better: The brain's neuroplasticity means it can rewire to move some functions and skills typically held in one hemisphere to the other.

Leo's seizures are linked to his sleep and tend to happen when he's woken from a deep sleep. During one of his naps yesterday, he sounded like he was breathing weirdly. Checking his monitor, I could see his eyes open and that he was having a seizure. Brian and I calmly coached him through it, removing Leo's pacifier, setting a stopwatch (a seizure is dangerous once it lasts 5 minutes because of the limited oxygen reaching the brain; at that point, you give an emergency med and go to the ER), singing him songs, moving within his line of sight to determine when he could start tracking us again. It can be hard to tell when a seizure has ended because he's a little dazed.

His seizures also leave him paralyzed for a few minutes afterward on his right side, but we breathe a sigh of relief once we see his lopsided smile. That means he's back with us, and the seizure is over.