How would you spend 24 hours?
Yesterday we spent about 24 hours of our Christmas break by having a 24 hour EEG done on Avery. In November Avery had a neurologist appointment. I wanted to talk to the DR about her sleep and possible mitochondrial issues. Her sleep in not so many words is: jacked up. It is just all over the place. Some days she'll sleep through the night, other's she's up at 2 or 3 am. Sometimes she falls back asleep, others she's up for the day. Which makes for me a very stressful life. I say me because I can't remember the last time my husband woke up with her. He works, drives over an hour for work and doesn't hear her he says. This then falls on me. So who doesn't get sleep if she wakes up? Me. Good times.
The DR though wasn't that concerned about her sleep. He said we were putting her to sleep to early and wanted us to push it back. Saweet. That's hard. She is just DONE by a certain time. While school was in session there was no luck in pushing it back. Since the break we were able to push it back a bit more. She's had good and bad days. There seemed to be about a week where she was sleeping through the night then poof 3 days in a row where she wasn't. That was right before the EEG appointment.
The DR requested the EEG to make sure she is not having any seizures that we can't see. He said that could be a reason for her sleep to be messed up and for her to have violent outbursts. We were to log all violent outbursts and all incidences.
We went to the clinic to get her set up on Monday. Obviously we have had issues with DR appointments before and I was hoping the set up there wasn't a tiny little room and it wasn't! She was kinda of iffy at first but she was such a big girl.
When we got home we were suppose to set up a video recorder. What would happen is if something were to happen and it was recorded on the electrodes the DR could see what was going on. Well what happens when you give a recorder to a child with a 4 foot cord? Um she tries to stretch it as far as she can. And she won't sit anywhere in the 4 foot radius.
At night we put her to bed with the video monitor in front of her. I thought she would mess with it and she just stared at herself on the monitor and fell asleep.
Another part of the process was that I had to sleep in the room with her to watch her incase she woke up and messed with stuff. That I think was the hardest part. I like my sleep. Well what little of it that I get. I have a very comfy bed. I slept on the old futon mattress we have in her room. My sleep was horrible last night. I also realized that Avery moves around in her bed a lot. She's also moves her feet a lot and I know this because she kicked off her blanket at least 2x in the 6 hours I was in there.
Finally at 8am we could take it all off and give her a bath and wash the gel out of her hair. She was kinda of miffed she had to take everything off but in the end she was happy.