Wednesday, March 4, 2009
I found myself caught up in the hopeful -not that that's a bad thing. I mean, that's what we're riding on here...H O P E!!! Buuut, there I was, once again, finding myself picking up the pieces of more disappointment on Sunday. I really should know by now to give it more time...but, how can I help it??? When Austin has these amazing days -or a week even...it's hard not to start imagining life without seizures. Because I start getting a little taste of how it could be again.
Saturday was just about the best day he's had in months. Very, very few seizures to speak of...I even remember sitting there feeding him and I had to ask Chad, Can you remember the last spasm he had? I honestly couldn't recall having seen one in hours. HOURS people! That does NOT happen very often. Then, I started thinking about the whole week in general...good moods, few seizures...HEY!! Could it really be?? The med FINALLY kicking in?
I was on cloud nine that night. I was even thinking about our upcoming trip to Detroit...maybe a total waste of time...we'd get there and he'd say...I don't know why you even brought him here...he's seizure free! Yep, my mind was ALL OVER the place with excitement.
But, Sunday morning he woke with a cluster...then another in the high chair...then head drop after head drop...all day.
That was THE worst...these awesome days seem to be followed by horrible ones. I wonder why that is? He doesn't typically have just a mediocre day after a great one...Weird.
Anyway, they've sort of leveled out a bit for the moment. About average, I'd guess.
They're different. They're not as intense as before. They're clustering more. There are very few slams on the floor. Very few.
I don't know what's going on. I'm counting down until we see Chugani.
About that, I got the rejection letter from insurance in the mail today. It didn't even mention anything about what I was concerned about. It said, ...it is not considered medically necessary for final evaluation of patients who are being considered as candidates for resective surgery. Member is not eligible.
Still waiting to hear from Sarah about that. She emailed me earlier and said she's still waiting on the fax from them. We'll see what she says about that.