Saturday, April 18, 2015

Sleepy, Lazy Day

Mira had a very sleepy day, which isn't surprising after she had two intense seizures yesterday - one in the morning and one in the afternoon. Both of them completely drained her and I think much of that exhaustion spilled over to today.

It rained here off and on all day, which added to the sleepiness for everyone here, especially Mira. She woke up later than usual and as soon as I got her in her chair, she started having some intense myoclonics, so we avoided the toy altogether this morning. She quickly drank two bottles and wanted right back in bed. From there, she slept off and on for 3 or 4 hours. She was quiet as could be and we ended up waking her up for a late lunch. Again, she started having heavy myoclonics in her chair, so we had to remove her toy. She dozed off and on in her chair and then became fussy right before dinner. She drank and ate a lot for dinner and we tried the toy once again. This time, she didn't have any drops and ended up playing for over an hour, before wearing herself out before bedtime.

At this point, her toy really seems to be a big trigger for her and I'm really not sure what to do. It's terrible for Mira because she really loves to play with it, but her seizure activity goes through the roof lately when it's in front of her. It doesn't seem to matter what time of day or her mood either - it just sets her off.

We sent in the paper work to GeneDx to see if we can get any sort of break on Mira's comprehensive epilepsy panel, since our insurance denied coverage. I am not optimistic that GeneDx will come back with a reasonable out-of-pocket cost for us, but we will keep following through with it.

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