Monday, November 24, 2008

Maybe tomorrow

Sorry so long since an update. Honestly, I haven't really been in the blogging mood. The new pressure of the vigabatrin trial has been seriously taking a toll on me.

I can't say one way or another if anything is happening yet. One day spasms are low and he's in a great mood...the next is the complete opposite.

It's been 6 days so far. Nothing to celebrate yet...I'm trying to be patient and remember that 3 days, 5 days, and even 6 days is waaaay to soon to start making assumptions. But, there's still a part of me that's disappointed that it's not making any difference yet. I wanted so bad for him to be one of the ones it helped in 2 days. If anything, after 2 days they were worse...then better by day 4. Now, today, they're worse than they've been since we started. 67 in 2 1/2 hours. That's with a baaad cluster of 55 though.

So, it's too soon to report any major news. Every day is different. That's why I didn't update when he only had 20 one day (which for some kids that would be a bad day...for him it's pretty good).

We are trying to take it one day at a time, and this day stinks.

Maybe tomorrow.

1 comment:

JSmith5780 said...

DON'T lose faith or give up yet. Though some kids respond quickly and at low doses, there was one little boy on the IS group, younger than Austin, who needed 2000mg a day. A LOT for a little boy! Here is his blog or just send a message to the IS board titled Tina- Connor's mom.