So, it's been almost 3 months since Aaron had his RNS implanted - the device that is both a constant EEG, and stimulator to stop seizures. We didn't get it turned on until December 10, at which point we learned the EEG part had not been doing much. It only recorded 2 seizures out of dozens. So they made adjustments, and turned on the stimulator...and it has made a world of difference.
He still has seizures, but I was convinced not as many (a few a week, rather than every day). And, he seems to be recovering from them faster - no more weakness and twitching for hours afterward. I wanted to find out if the device was capturing his seizures, so I contacted his doctor (we don't have another visit until 2 months from now). And sure enough, he said that Aaron has been having many seizures daily. And we are not seeing - and he is not feeling - many seizures daily. Which means that it's working.
It's.
WORKING.
It's hard to have a lot of hope long term, because things have worked before and then the seizures always came back, usually with a vengeance. But he is 8 school days into the new term, and hasn't had to come home even one time for seizures. I can't remember the last time he had 8 class days in a row without a call from the school nurse. I have glimmers of hope.
And even with all that, my fear isn't gone. I mean, I have had 11 years of waiting for him to fall and break a limb, or hit his head so hard he can't wake up, or just not wake up from a regular night of sleep. I will probably always want him to slow down, be careful on those stairs, don't do things that might cause him to fall because I know he can't catch himself. I don't know if that will ever go away. I don't know if the shivers of worrying the worst is going to happen will ever really subside.
But it IS a current victory, and I'm incredibly grateful and happily surprised.
