Soren is continuing to do well. Yes, he's still having seizures. But he'll actually have days when he doesn't have them. And the days that he does have them he bounces back quite quickly.
We're continuing to adjust his new meds with success. It's a lot of guesswork, but Soren is responding well and we feel good about the choices we're making. We've gotten some smiles and laughs. He's more engaged. He lets us know when he's upset or wants to get out of bed. There's a lot more "typical" behavior going on that is very promising. When Aaron enters the house and Soren hears his voice, he tries to look for him, working to turn his head or body around to find him. When all of us are surprisingly at home, Soren gets a smile on his face.
This summer we went to Carpinteria for Aaron and my birthdays and our 20th anniversary. Seizure-wise, Soren started out good, but then he had a really rough couple days. No rhyme or reason to it. That's just how it goes. The city of Carpinteria has a beach wheelchair that folks can borrow, so we took some lovely walks along the beach. And one of Soren's favorite things to do is relax in the shade on the beach and get his toes in the sand. We've been to Carp enough that Soren is seems comfortable in the town.
Soren is also responding to familiar family members. My family went to Catalina Island to celebrate my Dad's 70th and my brother's 44th birthdays, so Soren ended up hanging out with everyone quite a bit. My brother Patrick came to stay with us a week later and when he arrived, Soren became very animated and chatty. He clearly remembered Uncle Pat and had many things he wanted to say to him. Similarly, my Dad and Kathy came over this weekend to watch Soren and Moira while Aaron and I went to a wedding on Sunday. They arrived and then went out to with Moira to get her some running shoes for P.E. After they left, Soren was clearly looking for them and chatting away. He was glad when they returned and enjoyed hanging out with his grandparents.
Moira volunteered at Soren's school this summer and she was very surprised to see how much he was sleeping in class. She totally called him out on it. Aaron and I then realized, as parents, we needed to tell Soren that we had certain expectations from him when he went to school like we did for Moira. So we spoke to him very matter-of-factly and he started stepping up his game.
When the school year began, we found out that Soren was getting a new teacher. Last year he had a new male teacher. This year he has a new female teacher. And while he has had some awesome male teachers, Soren likes the ladies. Always has. The boy is a flirt. So between the pep talk and his new female teacher, he's been staying awake in school.
I haven't updated in a while because I've been very busy working and with the family. Then I received a comment on Soren's blog from the parent whose 10 year-daughter was watching Bronies: The Extremely Unexpected Adult Fans of My Little Pony, the Brony documentary where I'm briefly interviewed. He happened to hear me talk about Soren and he tracked me down because he has a 14 year-old son that, due to a brain hemorrhage as an infant, was left with multiple disabilities and intractable seizures. He started reading my blog and realized that while our sons have different diagnoses, we've had many similar experiences. And that's part of why I've written this blog. To help other parents who are on this same journey find ways to manage things. To help them see that they're not the only ones dealing with annoying medical companies. To say, we've tried this and it worked or it didn't. I'm so glad that my little part in the Brony Doc found someone and he found the blog and that it reminded me that I need to post about Soren so that all of you can know how he's doing.
Soren is a strong boy that doesn't give up no matter how crappy his day starts out or ends. I'm constantly impressed and inspired by him.
Amy
