Yes, we're still here.
I've been SO out of touch with just about everyone these days. I've got a boatload of reasons, but I'll spare you...
The main reason...there just hasn't been much to report. Seizures have been extremely high (& extremely intense) so my eyes stay on Austin all day (sometimes all night) everyday. In my spare time I completely shut down and focus on doing anything I can to distract myself from thinking about seizures. So, there's the condensed version.
I'm updating because I actually have something new. We had a 23-hr EMU study done at TCH last week (that's an EEG for anyone who doesn't already know). Still no hypps, but still no focus either. Still generalized...blah, blah, blah. It didn't give us much to go on in the way of treatment options.
So...after much discussion, debate, and procrastination, we've decided to go ahead with the ketogenic diet. We check in Sunday, Feb. 7 and will be there until that Wednesday or Thursday. While we're there, we'll most likely get a repeat MRI scan and lumbar puncture.
I'm sorry I haven't been better at keeping in touch with everyone. I've seriously needed a break from this though. It all just became too much to handle -and I'm still working on it.
I'll try to check back in soon...
