4 hours ago
This little doll started her day with a 15+ minute seizure at 5am this morning. I had to medicate that one as it wasn’t going to stop on its own.
We’ve also been counting her seizures. It’s so hard to keep track of every single seizure, but we are doing this to be able to report back changes to her neurologist in a few weeks.
Today I’ve noted 29 seizures, including the prolonged one this morning. On a whole, it wasn’t a particularly bad day. A lot of the seizures were very small quick ones, from 2-10 seconds. Some very subtle, some vocal and very obvious.
Today, none of them made her sleep (besides the medicated one), so that’s a positive, but her morning wasn’t great. Once she actually got up, there was a consistent hour of seizures. Toward the latter part of the day, they picked up again with some heavier seizures, and constant twitchy behaviour. Her longest seizure-free-ish gap today was for 3 hours where I didn’t see any noticeable seizure activity.
Now, although I’ve written that she had 29 seizures, and although day started bad, I wouldn’t call this a bad day. I know she had a lot more than 29 seizures, and there were periods of constant background activity.
It wasn’t one of Amalie’s bad days.... but shit, this is crap. It’s not one of her bad days, because we are used to it.
This is a typical day.
How sad is that?
#amaliesjourney #lissencephaly #smoothbrain #rare #epilepsy #seizuressuck #epilepsyawareness 💜