The hyperammonemic events that Matthew endured as a newborn damaged the area of his brain that controls his motor skills. At a year old, he still struggles to hold his head up. Even more difficult is bringing his hands to mid-line or to his mouth. For a very long time he has been receiving both physical and occupational therapy. Recently we added a speech therapist and a second occupational therapist. Over the months, I’ve seen Matthew look like he’s about to learn a new skill. I’ve seen him be quite fluid at a skill. And, I’ve seen him lose skills. All along the way, I’ve been happy, angry, and frustrated with his therapy. It wasn’t until a few months ago that I started seeing real progress in Matthew (when we added therapy from a different organization). It feels like for most of his first year he has either been at a plateau or has been losing ground. I can’t even describe the frustration that I feel when I think about that. BUT, Matthew doesn’t ever give up. Even when his therapist says that he isn’t making enough progress, that we aren’t practicing enough with him, that he’s regressing.. Matthew continues to smile and keep chugging along. He’s made tiny little steps: Sitting unassisted for 60 seconds, holding his head steady for longer, tolerating belly time longer, eating baby food by mouth. His PT, however has been dissatisfied with his forward movement. She referred us to a physiologist, hoping to have him put on a muscle relaxer. Thankfully, the physiologist didn’t think that was necessary. She suggested a Botox treatment for his arms.
Just over a week ago, Matthew had 4 Botox injections down each arm. “Don’t expect any miracles” were the doctors parting words. But, miracles is what I feel like we’ve gotten. Within hours, Matthew’s arm movements were increasing in range of motion and were more fluid. He was no longer fighting us to move his arms through further range of motion. In the days since, he’s been holding toys more easily. He’s been accepting of us showing him how to shake the toys. He’s been trying to reach for things. Nurse E says that the other day he fell asleep holding his hands together at mid-line. We’ve seen a marked decline in his ‘fencing reflex’ and an increase in his coordinated movement of his arms and his bringing his arms closer together.
This morning he had another OT appointment (we love this therapist). She was so excited to see his progress from last week. She had feared he was plateauing with her. Today, though, Matthew shook a toy twice, On His Own. He brought a toy to his mouth On His Own. He pushed his body up off of the floor from flat on his belly. Normally, we have to pry Matthew’s finger open to put a toy inside and when he’s frustrated or angry, he throws his body into extension (straightening his body and going completely stiff). Today, she tried ‘activating’ his muscles by gently stroking on the back of his hand, to which Matthew responded by opening his fingers and grasping a toy. When he tried to go into extension, she gently stroked his back downward and he relaxed back into his seated position.
Botox will last for about 3 months. We are on the upward swing of the drug taking effect and then at some point it will start to wear off. The hope is that in those three months, he will be able to strengthen his muscles enough to not need any further treatments. The physiologist may not call it a miracle treatment, but I do. In one week we’ve seen massive improvement that has been a year in the making!
I’m so proud of him. Daily I am proud of him. He is such a little fighter. I love that he just doesn’t care what others think. He’s determined to prove everyone wrong, and in his own time.