Some days just seem to be calculated to make you feel like a bad parent, don’t they? Jade had a pretty rough weekend; we were back up to 20 to 30 seizures a day and she had a number of injuries that have just added up to make me want to cuddle her in bed all day.
The worst part is not knowing what to attribute the seizures to. She doesn’t seem to be fighting a cold, although she occasionally coughs, but that seems to be permanent with her — we all cough sometimes, right? She did have an increase in Clonazepam (we added a lunchtime dose on Saturday) but don’t know if that’s the link. She’s actually having a hard time getting to sleep, which may mean she’s more tired, which may explain the increased seizures. But we have to look back through her records to see if this happened after the last Clonazepam increases (I seem to remember the opposite) and it could be that whatever it is will only last a week or two. It’s just so hard to know; there are too many variables.
My heart was so heavy when we dropped Jade off at daycare this morning. First I had to wake her up; after a restless night, she was sleeping hard this morning. I’m scared to wake her up these days because I worry that I will cause seizures by interrupting her much-needed sleep. But I had to get to work and Michael had a dentist’s appointment, so I pulled the blanket off her and thank goodness she woke up gently and relatively happy; it’s heartbreaking when she cries to go back to sleep.
As I was getting her dressed, I noticed the right side of her face was swollen up like a chipmunk’s. That would be the result of one of her seizures yesterday evening. She was standing on a short stepladder watching me make supper. I knew she might have a seizure and was ready to catch her. Unfortunately, the one she had was so violent, it slammed her head into the top of the stepladder and then flung her back. She cut up her lip and must have hurt the inside of her cheek as well, judging by today’s appearance. There was blood everywhere as she sobbed her pain and kept seizuring. I cried right along with her, feeling completely inadequate. She’d already fallen down some stairs at the playground in the morning (not the result of a seizure and not a really bad fall, although she did a face-plant that had her mouth and eyes full of sand) and on Saturday she managed to poke a stick into her own face and leave a welt on her cheek. Although I wasn’t really thinking, I could feel that this weekend might just go down as one of the worst parenting weekends in history.
I called the daycare a few minutes ago and Jade does seem to be doing better today; despite her lopsided appearance, they haven’t seen any seizures yet today. I know they were watching her closely because a worker from the Child Development Centre was there to observe Jade (part of the developmental assessment we’re having done). With all the seizures yesterday, we ended up giving her a shot of Valium last night, so even though we continued to see a few seizures in the evening, it might be helping to calm down the seizure activity today.
I’m sorry this is another downer of a post. Ummm, on the bright side, Heather and Leah really did come for two hours on Saturday morning and left in their wake a shiny clean (if still messy) house. It was so relaxing to sit on the kitchen floor to play with Jade and look around and think, “Ahhhh, what a clean floor!” God bless them.