Last night at 3 am Nora had another tonic-clonic seizure.
She was stirring in her sleep around 11pm and I was still awake, so I went in to lay with her. I decided to stay in her bed. She slept fitfully, was having bad dreams, so I did not sleep soundly either. I woke at 3 am and knew she was having a seizure. It lasted around 1 minute as usual; when it stopped she slept peacefully on my chest for the next hour. The time from 3-6 am passed slowly, every little twitch and jerk maintaining my adrenaline levels. I probably dozed occasionally.
Around 6 am she woke up complaining that one eye and one foot hurt. Then slept a bit again. Ted found us with the lamp on and heard the news. When she woke again she was irritable, but now seems to be feeling better with constant parental attention. She is singing and chatting with Ted as they read books and he feeds her breakfast.
I had plenty of time to ponder “why?” in the dark. The brownies I made yesterday? There was nothing new in them, although she had more cocoa and stevia yesterday than usual. Too many calories? We ate lunch at the co-op with her usual foods, but I estimated amounts by eye. Maybe I missed something? Did she eat something that I didn’t see? Is the window gel cling that she ate last week haunting us? Constipation? Lack of sleep? She didn’t nap yesterday and was not sleeping well.
Ted has been on edge for a few days, feeling that something was off. I made the decision to sleep with her last night. Can we see the subtle signs? Maybe that is a good thing, but can we keep track of the times when we were anxious and nothing happened?
What now? We are on edge again. Today the anxiety will be the worst, and it will subside if there is no more seizure activity today. What about tomorrow? Should she go to swimming lessons tomorrow? Should I stay home with her instead of having the babysitter spend the day with her? How do we add this to the graphs? We haven’t been plotting tonic-clonics. I don’t want to see another data point (that’s a joke. haha.)
Long term, why a tonic-clonic? We haven’t seen one since August–what does this mean? I can’t help but be disappointed that the clock re-starts today on the 3-month-seizure-free goal to end the medication, and the 2-years-seizure-free goal to grow out of it.
There will always be more questions than answers. As I pondered this from 3-6am, I thought that this experience is like falling into a deep pit. I feel like we hit the bottom in November. Now we are trying to climb out, but will lose a foothold and slide back down a few times before we finally make it to the top. At least we aren’t alone down here in the dark.
Sending you lots of love and hugs.
Thanks Sheryl. Nora had a good day.
Serioulsy, no one could do this like you guys. You are doing an amazing job. I would trust your ‘eyeing it’ more than I would trust my own measuring it! Be easy on yourself, ok? This just really sucks.
We love you!
Awwww, thanks Amy. I’m also realizing how many special little folks are out there with their own needs (and big folks too). You guys have been a model for us too–especially keeping up your own shiny smile 🙂