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Our time at Texas Children’s Hospital has definitely not been boring. Max’s seizures more than showed up to the party: they were the party. Like I wrote in my last update, it’s a very strange place...
We are still at the hospital. Max is MUCH more lucid than he was during the week. They had to use some pretty big heavy hitters to get things to calm down. Max was sedated and...
Since the last update, we’ve had a lot of ups and downs. I wouldn’t necessarily say UP ups, but middling ups. We were able to get Max stable and back to his baseline. We ended up...
We left off still at the hospital, with clustering seizures. That continued for an additional week. Max wasn’t really improving at all. The doctor acting in the place of our epileptologist (she was out of town...
Here comes a long overdue update. I’ve sat down to update this countless times and written and rewritten this in my head so many times but I haven’t been able to make myself do it. Some...
If you said seizures, you would be correct. This is how things are supposed to go post surgery. The RNS is strictly monitoring right now. Despite the fact that we knew that they would return, this...
We’re back to the waiting game, productive waiting which definitely feels better than where we’ve been before. Max’s RNS is doing it’s thing collecting data and we’re doing our thing uploading it. We’ll have our first...
So we’re home and settling back into a routine. Max is doing great and SO happy to be home. You would never know he had two major brain surgeries within the last 11 days. So what...
Max had his RNS surgery yesterday. It was a long day and if I haven’t said it enough, let me say it again, he is AMAZING! He came through two brain surgeries in one week and...
Tomorrow is the big day. All the data collection between mapping and this point was depending on Max’s brain. The team was able to see and record enough of his big seizures to get the final...