Phenol can only be done every six months. It is done under sedation and as it gets closer to the six months the effects of the medicine is gone and his muscle tone returns with a vengeance.
So what happens when it is gone? Imagine having a sore knee. It hurts so bad when you do certain activites. You stop doing them because of that pain. Then they fix it and you can go back to doing what you had done before. Then as time goes on that pain returns.
That is like Ty and his CP. It is always there but the shots help the pain and stiffness go away. Then as they start to wear off the pain comes back.
This makes him CRABBY. Like Super crabby. He falls more and things get WAY more tragic than they were a week ago. He hits his head more. He won't eat and the already way bad sleeping is even worse. He is up super early making the already tired kid even more crabby when it comes to falling.
After a week of non stop crabby pants we decided to make sure it wasn't his ears and went to the pediatricians and got a clean bill of health. She then suggested just MAYBE, JUST maybe it is his CP and that his muscles hurt at night.
Dallas and I had talked about it and Dallas had suggested that maybe he was more frustrated by his muscles and his inability to move easily so we went with both suggestions and called his CP doc. She called in a script for Bacolofen.
I have been weary to try it but thought heck, it can't hurt right? And hurt it DID NOT! It was hard getting a pill down him the first night. He cried and I had to force it down. The next try we just put it in the straw of his drink and it was fine. Last night I tried a bite of Ice cream and it worked like a charm.
Not only did he sleep great but he slept in his own bed.
He slept through the night.
I checked on him a LOT. I hadn't heard a word and was a little nervous. But he did sleep in his own bed.
Day 4 and he has slept AMAZING. I think we might just have to keep it up.