They wanted to evaluate Tyler for the 2 options that just might work for Tyler. Our options are a Rhizotomy or a baclofen pump. In order to do the pump Ty needs to get a bit fatter and we need to do a baclofen trial. We would insert baclofen into his bottom spinal cord and see what muscles it will effect and what tight muscles it will take away. The trial takes all day. We have to be in the RTU ( rapid treatment unit) for up to 12 hours. Dallas will be gone on the first option for the trial so we are hoping to do it at the end. There is no way I can do it alone so we have to make some adjustments OR do it in September. But he needs phenol in between with some casting ( which isn't going to be happening because I can't carry him) and we have to have the shots out of his system. So we are kinda in a tough spot.
The Rhizotomy ended up not being an option but it was clipping some muscles in his legs and gastroc muscles. (A muscle in his legs) Apparently his tightness is not exactly where it looks at first glance and after making him very angry and upset they found the right area. So thanks goodness we don't qualify right now. Oh and we can't forget that it takes MONTHS in the hospital to recover with intensive therapy to get him to walk again.
They checked his range and his spine and watched him walk. While I was talking to the doctor one of the therapists took off his clothes so she could see his muscles move. He was TICKED. He kept screaming "My pants, my pants!" So the lady threw them across the room so she could get him over to the other side. He grabbed his pants, sat down and tried to put them on. HE was so not a happy camper.
After 2. 5 hours of poking, prodding, and screaming and being held down we were out of there. I was very impressed with the clinic. We got a lot of information. It was amazing to see the doc and the therapist hope right on the phone and call and get what we needed. I think after fighting for a year for certain things it was NICE to get the things we needed quickly. Funny cause the stroller showed up pretty darn fast!!
Ty is a trooper. What a kid to put up with it all. He was asleep quickly on the way home. HE did a great job the rest of the day!