Wednesday, July 02, 2008

Quick Update


Just wanted to update everyone before the big 4th of July weekend. The art opening went off very nicely last night. A few pieces sold. And the art will be up for the next month at Cartoon Network if you want to swing by and buy something. Thanks to everyone Cartoon Network for all their help in hanging the show and for throwing the party!

On Saturday, Soren will be up to a therapeutic dose of Clobazam. So far so good. He's not extra loopy or anything. Now we just have to see if it stops the seizures.

Also on Saturday, my brother Patrick will be getting married and Soren will be the ring bearer. Aaron will stroll Soren down the aisle where the rings will be handed off to me (my sister and I are standing up for Patrick). I must admit that I am both excited and nervous about Soren's ring bearing duties. Will he be awake for it or will he just shut down? Will he be happy and chatty and disturb the ceremony? Or will he be angry like he was at the art opening last night? As with everything, it's unpredictable. But I'll send an update after the event! (and hopefully pictures too)



Tish said...

Amy - thank you for your blog. My family is interested in learning more about DR. Can you please give me a summary of the improvements you've seen. We have a 21 month old we are considering treatment for and have seen the good and bad concerning Dr. Rader too. It's so hard to know what to do..... Any guidance you can give would be greatly appreciated.
Thanks so much.

Soren Patrick Rogers said...

Hey Tish,

While we haven't seen has significant of changes as we'd like, we've seen some very good progress with Soren. He had no neck or trunk control prior to his treatments. Now he has excellent control of both, though he still can't sit completely independently. After our 2nd treatment, he started laughing (in fact he laughed that entire night!). Prior to that we had heard his laugh about 2 times. He is clearly much stronger and much more aware. I fully believe he understands us.

But I have seen amazing things with other kids. One boy was in a vegetative state and now walks, is seizure-free, and is on no anti-seizure meds. Another boy can walk with a walker now and is speaking in full sentences (he was only able to say one word answers prior).

I, of course, read good and bad things about Dr. Rader as well before we made our decision. But I have personally seen more good come from these treatments that can be explained no other way.

I hope that helps!