Monday, August 18, 2008

Been Busy!

Sorry I haven't updated in a bit. Things have been crazy-busy with the kids finishing up their summer vacation. Soren is done with summer school and has 3 weeks off before the new school year begins. So now he's in summer camp from 9-12 at his therapy center. He was a little grumpy the first day of last week. We think he may have thought he had to do therapy there. Once he realized it was camp, he had a good time.

And the update on his cold/seizure control is that he had this lousy cold for about a week and had no visible seizures!

We started the Clobazam 2 months ago this Thursday. That day (June 21st) was the last time I had to give him Diastat for his tonic-clonic seizures. We also noted that we didn't hear Soren have any night time seizures during our weekend in San Diego when we all shared a room. He does wake up some mornings with a little stiffness, but we really think this is because he's getting his legs into funny positions that he can't get himself out of.

Soren is alert, happy, a laughing a lot. People are really noticing the difference! Now if the FDA would just approve this amazing drug!


Thursday, August 07, 2008


Soren woke up this morning very cranky. When I was giving him his milk, I noticed his nose was stuffy. I was afraid he might have a cold. Then when I stripped him down for his bath, I noticed he was a little warm. Taking his temp, it came to 100.9. Yep. Sick.

What is unprecedented is that his cold was not foreshadowed with a round of seizures. In all of Soren's life, when his defenses are down (or in the process of getting knocked down) he has seizures. We always freak, worrying why he's having the seizures, and then the next day he'll be sick.

But yesterday he was fine. He was happy. He went to school. No seizures. Just the cold today. It's gotta be the Clobazam. And I'm crossing my fingers that, for the first time, Soren has a cold--and just a cold--like any other kid.


Monday, August 04, 2008

Team Soren Blog!

  • Team Soren
  • now officially has its own blog! There you can read about updates on Team Soren's training for the L.A. Triathlon on Sunday, September 7th.

    You can also donate to Team Soren by clicking on the DONATE button either on that blog or here on Soren's blog!

    You will also see our cool Team Soren logo! Check it out!