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Friday, June 2, 2023

Awake!

He woke up! 

Yes, it's that big a deal.

He's been tired since last weekend, and mostly asleep since Tuesday night. 

We would see eyeballs occasionally, but not for long, and pretty much not at all since we got here.

He's also been fevering and nothing we did changed that.  It was 38.5 most of the time, sometimes fluctuating between 38.3 and 38.7 (100.9 and 101.7).  Tylenol, Motrin, rescue storming meds. Nothing touched it. 

It's 37.5 (99.5). 

The V EEG is going and he didn't show anything for the first 24 hours or so. Pretty sure we've seen two seizures in the last few hours. While I wish he wasn't having them, I'm grateful he's "performing" while the test is going. It will run for two more days, unless there ends up being plenty of data before then.  Sigh...

But awake, yeah.

I don't have to tell you what it does to a mama's heart to watch her child lie sleeping, hour after hour, day after day.  And it's really only been a few days. But somehow, it seems to stretch and feel like much longer. 

Here's hoping for steady improvement and moving forward.  

He is asleep again, but seizures are exhausting.  That's okay. Baby steps... 

"The hardest part of being a parent is watching a child go through something really tough and not being able to fix it for them."
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