So remember me talking about the VNS implant?
And remember me mentioning that Christian will be having surgery to implant the VNS for seizure control?
Well, that surgery is a week from today! It snuck up on us just like his third birthday and just like the first day of preschool.
But, also remember how I said I wasn't scared? Well, I'm not scared...just a little nervous.
I've discussed it with myself a dozen times:
What if it makes things worse?
Should we really be doing this?
What if there are complications? What if he's in pain?
Will this be too much for him?
What if it doesn't do anything? We've been through that before but is putting him through surgery worth it?
Will this make things better?
And this track just repeats over and over again in my head. On his best days I wonder why we're doing this. But on his worst days, when he cries all day, I think we should have done it yesterday.
The truth is that I'm used to his seizures. They're small and short. They've changed over time and we've learned to live with them. And I think they may have brought on his smiles.
There is a period of time after Christian wakes up where he has seizure activity. He used to have a continuous and rhythmic jerking that would occur in clusters over the span of 30 minutes. (No, it wasn't a 30 minute seizure.) Waking and falling asleep are times where a lot of seizure activity can occur in kids with epilepsy. That's why when children go in for EEG's, sometimes they are required to be deprived of sleep. I guess that's when the seizure party starts.
Anyway, during this post sleeping period Christian used to jerk with his head and eyes to the right. It was suttle and rythmic, one at a time. Then after the 30 minute period, he'd snap out of it and it was back to regular Christian. This period has changed over time and weaning of seizure meds. At one time it was extremely physical with his arm jerking him over, almost knocking him off the couch. And at some points this period has subsided and gone away completely. Right now, it's not as long a period. It only lasts about 10 minutes. But now it's the BEST 10 minutes of our day.
Instead of jerking, he smiles. It coincides with this time and I'm pretty certain it's related to seizure activity but I don't care. I'll take this over nothing. It's a little desperate, yes, but when given the choice between no smiles and smile seizures, is it really a choice?
Below is a video of what this looks like. And if you listen very carefully over Dr. Phil blaring from the TV and me trying to coax Christian to smile (because he will respond to stimulation by smiling even during this seizure period), you can actually hear him make a sound while he does this that sounds like it could maybe be a little happy sound.
And then after the 10 minute period is over, it's over. He won't react the same way, in fact he gets pretty mad if I tickle him and yells at me. It's over until next time he wakes up.
I know the VNS surgery is supposed to take seizures away. But if this is Christian's version of smiling...and it has to be accompanied by a seizure...what if VNS takes it away? I don't want it to go away.
March for Science
6 hours ago