Thursday, October 11, 2007

Catching Up!

Whew! It's been a busy time. I'm sorry I haven't posted in a bit. My 20 year high school reunion is this weekend and I'm on the committee, so I've had that. Then Soren's 2nd IEP was last Friday, so I had to prepare his binder. And Soren's been having a bit of a rough time with seizures. So, finally, I'm here to catch you up on all of that (well, not my reunion, though that's been quite a to-do!).

The IEP went VERY well. We had our advocate there, which was really good because, as a parent, it's hard to be objective and think of all the questions you should ask. I had put Soren's binder of information together. That was much easier than last time, but still time consuming. I even wondered whether I should bother. Last year, nobody knew Soren. This year we were just trying to get him to continue with the same services.

But, as usual, I'm glad I did the binder. While they had all the PT and OT reports, I have been keeping a log of Soren's medical stuff (testing, seizures) so I was able to give them that update. And then there was his Feeding Therapy Report, which they didn't have because it isn't one of their services. It's paid for by the Regional Center. So it was good to be prepared.

We got everything Soren needed. Since they now know him well, we were able to set realistic goals for his progress. It all went exactly as I'd hoped.

As for Soren's seizures, last Thursday he had two, then Friday had one, Saturday two, Sunday one, Monday one. So it's been a roller coaster. They've only been Tonic seizures. And they seem to be knocking him out for less time. The Friday of Soren's IEP, he had a seizure in the morning, but then went to school and had no others. We haven't had to give him Diastat because he hasn't been looping. Still, it puts me on edge. He (knock wood) hasn't had any seizures since Monday.

Soren also had his 4 year pediatric check up yesterday. Besides his brain, this kid is healthy is a horse. Good heart, good lungs, growing (and growing, and growing).

Next week (after the reunion is done) I begin to tackle new Soren projects--getting ramps for the house, getting the van retro-fitted for a wheelchair, getting his tests off to different hospitals, getting him into the Clobazam study. Whew!

So I'm going to whoop it up this weekend to prepare for my next battles.


1 comment:

Daniel's Hope said...

Hi Amy,

Thank you for all of the info on this website. We are preparing to take our son Daniel to the DR for the second time. It is so wonderful that you guys have been so open about Soren's treatment. We, too, saw success with Daniel the first trip. We almost lost him over the summer but I am convinced that he is still with us because of all of his treatment regimens. Please look at Daniel's page and we will continue to watch Soren's. Connie Sacripante