We just installed a video monitor in the kids' room. K is spending the weekend with us (starting tonight). She's been having seizures about every other day, despite the medication. The monitor will allow us to see her and hear her when she's in bed. Otherwise, we might not know when she's having one.
We can't let her out of our sight at all, anytime. She's had three "awake" seizures, meaning she wasn't in bed. She actually felt them coming on, but by the time she realized what was happening, she couldn't cry out for help. Her mom found her at the top of the stairs one morning, perilously close to falling down them.
Our house is full of stairs.
K has stayed with us a few weekends since she began having seizures, but she didn't have one. We were so confident she wouldn't have any more. But we know now it's inevitable that she'll have one when she's with us. I am terrified.
The seizures have become so violent that I worry about her and B sleeping in the same bed together. I'm seriously considering having B sleep with us in our bed when K sleeps over. I know K will understand, but B won't.
This is hard on our poor girl. It's affecting her school work, and she's starting to have esteem problems because she feels singled out and different from the other kids. And she's understandably worried that she'll have a seizure at school, in front of her classmates. Although she and her mom went to the school and gave a talk to the kids about K's condition and what they might see, and what it is, how can they be prepared for it when it happens? It is truly awful to see.
So this weekend. Today. Tonight. We are taking the bed (queen size) off of the frame and placing it on the floor, so if she seizes while in bed, and if she manages to go over the safety railing, she won't have a long fall to the floor.
I don't know what else we can do to prepare for what will probably happen at some point this weekend. I hope it doesn't. I really really hope it doesn't. My memory of that first time is still so vivid, my heart races just thinking about it. Actually, and in all honesty, a teeny part of me hopes it does happen, so we can start getting "used" to it. Desensitized to it. If that's possible. I'm just afraid of it. Afraid of how out of our control it all is; how K looks when she's going through it; what B will see and hear; whether or not K will be injured somehow when it happens. All of it. It's scary.
Last night I found myself praying to a God I barely believe in anymore, asking him to please take this away.
0 Comment(s)
