Monday, August 7, 2017

even the magic hour breaks

I've been diligently tracking Trevor's seizures the past two months. I stopped using SeizureTracker because it was just too busy.  I tried the Epilepsy Foundation's My Seizure Diary, and it was even more difficult to navigate than ST. I needed to simplify. My brain can only handle so much right now. 


So, I printed up a simple grid divided by hours from 6am-8pm. I don't know why I included 8pm, he's always tucked in by that time. Or the 1pm row, because that's his daily rest time. Anyway, I put a tally mark in the corresponding square each time he has an event.




He's averaging 3 seizures a day. Sometimes more, but never less than 2. He's had a seizure every single hour of the day he's awake, except for 5pm. He's had seizures at 6, 7, 8, 9, 10, etc. But 5pm was the "magic" row. That blank row was like a little ray of light in this dark valley we're treading. Silly as it may be, seeing it tally mark free made me happy. 



Today, even that was taken from us.



My 5pm line is no longer blank.



Sigh. 

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