"GOT YOUR NOSE!"
Due to the spasticity in Cole's hands, when he gets excited his little hands ball up into tight little fists, with his thumb tucked in as if to be playing "got your nose".
In the above picture he is very excited and 'trying' to talk. He still is unable to actually form words, other than the very occasional "maamaa" when he is upset.
More often than not he only makes the ahh-ahh-ahh sounds with his mouth wide open like a baby bird waiting for a worm from it's mother.
I love hearing him try so hard to even get the volume forced out and I can hear that it is a happy sound. He definitely has NO problem getting the volume out when he is upset or screaming.
We have decided to go forward with the botox for Cole. I truly appreciate all the input I received when I asked for your honest opinions. I've madly been researching all that I could, and still researching. I really need so much more time in a day and probably still would never find everything.
I've spoken with Cole's pediatrician, all of his therapists and neurologists. And, I feel in my heart that this really is the best option for him at this time.
His therapist explained it to me like this... There may not be any major improvements, meaning this will not necessarily mean he will be able to just reach out and pick up a cup, but by reducing the spacticity in his hands and arms it will provide the perfect opportunity for productive therapy.
We provide therapy for Cole and we will repeatedly perform a task to try to retrain his brain that 'this' is how you accomplish 'this' task. For example, we may have him reach for his cup by stretching out his arm, then we have to pry his hand open to place around the cup and we have to hold the cup and his hand or the weight of the cup forces him to drop it and we will bring it back to his mouth. This shows him how to do the task of drinking that is so simple for us. In this process not only is he having to think about the movements but he also struggles with trying to force his tight arms to be straight and forcing his hand to open.
Right now the harder Cole tries to apply any movement in his arms or hands, the tighter they get and they draw or close up. We are hoping with the botox it will relax these muscles so he can move them in the correct direction.
While Cole does seem so young to receive the botox this is really the best time to 'teach' or retrain his brain how to move his muscles.
Once again, I truly appreciate all of your advise and apologize as I was unable to reply. Please keep Cole in your prayers, send positive thoughts or whatever you feel will help him have the best outcome. He is scheduled to be treated on Monday, May 4th and I will post about the procedure as soon as possible.
