These last few weeks have been ones of evaluation for Matteo. He's had assessments by all three of his therapists, his Regional Center advocate, the physiologist, the opthamologist and the gastroenterologist. It been 6 1/2 hours of meetings and over 200 miles of driving. Meetings such as these are always fraught with emotion for me. Will the news be good? Will he need more intervention/therapy/surgery? Will we need to see another specialist? Will I get a hint at the future? As one might expect when dealing with a child the news is always "yes" and "no."
First was the evaluation by the Early Childhood Developmental Therapist. She did a thorough evaluation of how Matteo is doing with his gross and fine motor skills, his cognitive skills and his communication skills as they compare to normally developing children. I didn't come as a surprise to me that Matteo is behind, but I was taken aback when I read that he is testing at the 8 to 9 month level for most of his skills. It's only in communication that he jumps to the level of a 12 month child. He's 20 months old now, so he's about a year behind in most skills. The scientific/rational side of my brain knows that this is expected. After all he does have Cerebral Palsy. But the emotional side of my brain was surprised. He has made such strides recently with cruising around the coffee table and starting to say words. He's also much more expressive now. He has definite likes and dislikes and he has no problem with letting you know when he's had enough of something. I guess I was hoping for a better result. The upside was that the Regional Center Advocate was very happy with his progress and said that he had met all of his goals.
The next evaluation was with the occupational therapist, the physical therapist and the physiologist. This was the big evaluation for how he was progressing with his muscle skills and how well he was responding to the therapy. Again it was a mixed bag. His fine motor skills are progressing and he's very motivated to get up to a standing position, but he is having a lot of difficulty with his legs. His adductors, the muscles on the insides of the thighs are very, very tight. So tight that when he stands, his legs automatically cross. His hamstrings, the muscles that connect at the base of the hips and the top of the lower leg at the back, are also very tight. They tilt his pelvis backwards and cause him to have a perpetually bent knee. Imagine that you are trying to stand on your toes, with your knees bent, back curved and legs crossed. Now try to walk. It's almost impossible.
What can we do? There are three options. One, we can continue on with just therapy and see if we can get his muscles to release. This is the least invasive method, but it will delay his being able to walk considerably and he will likely lose ground with his balance and other skills. Two, we can do surgery to release his adductors and hamstrings. This should make a very big difference. He would probably progress very well. The downside is that he would likely have to have the surgery again. With my daughter, we don't even think about surgeries. With Matteo, I just want to limit them. The middle of the road is Botox. No, not for me and the new and deeper worry lines on my face, but for Matteo in order to try and release his tight muscles. He would get a sizable injection, under a general anesthetic, to the muscles on both legs. For the following two to three months, the Botox has the effect of partially paralyzing those muscles. In that window, we would do extra therapy to try to both lengthen the tight muscles and strengthen the other leg muscles that he should be using to stand. The hope is that this would enable us to we can stave off surgery until he is at least 6, or until he needs surgery for his hips. His hips are a totally different matter that the orthopedist says we'll need to deal with in the future. Right now we're focusing on the muscles.
After lengthly discussions with Patrick and my sister, the family opthomologist, we've decided on the Botox. As counter-intuitive as it is to inject your baby with a deadly toxin, it really is his best option. We've put in the request to the insurance. When we get it back, if it's approved, we'll get an appointment for the injections. I don't think all of this will happen any time soon as they only do this procedure twice a month at the hospital. In the meantime I have to figure out how I'm going to add several more therapy sessions a week, both at home and at the therapy unit, and still get things done. As it is now I struggle to do it all, and I'm behind on most things. I think in a way this is God telling me that it is time to simplify my life. I don't simplify well, but I am going to have to if I am to meet the coming challenges.
