Tuesday, December 31, 2013

24 hours

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.

I was worried she would fight us, then I was worried she would pull the electrodes but she was such a trooper. She sat still and was very patient.

She held on to that all organic lollipop all the way home. Didn't even touch. Was just happy to have one!

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.

Like most days she won't let you hang out in her room with her either. So this was my view yesterday for most of the afternoon. We had to watch her to make sure she didn't mess with the cord, the pack or the wrapping. The only thing she really messed with was the pack. It had a little button you pressed if she had an incident (like a violent outburst) and it would help the DR to see it on the report. She loved to press that when she was able to get the pack off. That only happened 2x. I really kept her busy with giving her lollipops over and over. So in reality this kid was a rock star with everything she had to go through yesterday.

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.

One last shot of her eating breakfast with everything. Yeah oops we didn't have a button up shirt for her so she wore that for pj's to. The electrodes also had 2 attached to her back to monitor her heart as well.

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.

She was saying, "Cheeeeeese!" here. After this she just took off running around the house! Pretty happy to be done with the EEG. We won't have the results for awhile but imo this kid though was a rockstar the last 24 hours! Superstar!

4 comments:

  1. Rockstar indeed! Fingers crossed the results are good.

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  2. Sweet baby girl. That's a lot to go through. She was a real trooper! Hope this gets you some answers. I have a friend whose daughter has a mitochondrial disease. It's been a tough one.

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  3. Happy that part wasn't hard on her!

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  4. That is a lot for a kid - and a mom - to go through. Hope you get results that help you.

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