First Halloween

Jayen got to start his Halloween celebrations early. The Pediatric Therapy Center, where Jayen goes to PT and OT, had a special trick or treat session for the kids on Wednesday. Dalan and Jayen both loved the obstacle course.

We had lots of celebrations. Our mommy play group also had a special Halloween party for us on Saturday. Then we went to a friends house for a costume party. It was all so much fun.

On Sunday we went trick or treating in our neighborhood. When we were all done we came home and ate supper on our new porch. It was so much fun to sit out there as a family and pass out candy to the other trick or treaters. It was such a great weekend.

Neurology Appointment

Well we had our neurology check-up today. The doctor came in and asked how things were going. After a few minutes catching him up on everything that has happened, we both decided that it is time to start tapering him off the Topamax. YIPPPPPPPEEEEEE! We will start tapering tomorrow. It will take us 6 weeks to get off the meds because it has to be done very slow so it doesn't induce seizures.
This news comes with great joy and great anxiety. Once we are off all medicines are the seizures going to return? Are we going to keep making the progress we have been? I am just so nervous about what is to come. We will just keep praying and hoping for the best.

IS awareness week

This week starts Infantile Spasms awareness week. I want to help raise awareness because I think if it wasn't for our persistence that Jayen would not have been diagnosed as quickly as he was. I still remember the doctors trying to tell me that he was just getting startled. I got out my video camera and recorded Jayen until he had a seizure. I sent it to every doctor and anyone I could think of. I knew it was more than just getting startled. I pray that this does not go undiagnosed in others. The quicker the diagnosis the better the outcome!
Praying for a cure!

This is HUGE!

I have been practicing and practicing and practicing and look what I can finally do. I can move my tongue and bring food from the front to the sides. I am not choking on my food as often as I was before. I think I am getting this stuff now!

This has taken Jayen months of therapy to finally be able to do. We have done exercises inside his mouth, outside his mouth, with his tongue, and with his cheeks. This has been a long haul but we are finally getting somewhere.