|Cuddling with Keri in church 2 weeks ago, after her seizure...|
We are holding our breath again...
Faith has made it a week without any "noticeable" seizures. She had some odd movements in her sleep the other day, but not sure if it was a seizure or not, just really twitchy.
Over the last 2 weeks Faith has had 2 "known" seizures. They have been relatively small and fairly short, under 5 minutes.
They have both happened at church. Which really sucks.
The first week it happened was January 9. She came in and was dancing during the worship service, then all of a sudden lost her balance and nearly fell over. I caught her and brought her out of the sanctuary right away. It was just a focal seizure, with facial movements (not sure what that kind is called yet...) and it was about 4 minutes long. She came out of it and slept for the rest of the service with a friend.
It threw me off. I kind of go scattered after any seizure activity, not sure when or if I will ever get to the point where I just carry on like nothing happened. It messes with my plans, which involve coordinating Sunday school and stuff...which means I have been falling behind in that area.
She went through the whole following week seizure free. A nice week, and one we haven't had in a while.
Then came Sunday, church again. This time Faith made it through the whole worship service and even most of Sunday School. Towards the end of class we were called out of service. Faith was in seizure again. It was a little bigger then the last one, with small twitching, again only lasting about 5 minutes.
I can't figure out what the trigger would be. Church is such a different environment then anywhere else.
- Lots of people, crowds, people wanting to hold/love on Faith
- High energy environment, lots of music, dancing, activity
- Open space, lots of room to run around in
- Lots of kids in a mid-sized room, running, loud noises, crying
- Her crying hard, because she doesn't like to go anywhere on her own now
How we are going to handle it for a little while is by having someone go to Sunday school with Faith. Just to keep an eye on her, and to notice if a seizure were to start.
It is hard to figure this stuff out. It would sometimes be easier to just stay home. It is scary not knowing where or when a seizure is going to start. It sucks that Faith has to go through this (again and again). And it also sucks that I am going to have to train the Sunday School workers to notice a seizure...This wasn't supposed to be part of the plan.
But, it is our life, and we are documenting everything. We will do our best to figure it all out. And we hope to have an uneventful morning at church tomorrow.