Physiatrist Appointment

We arrived home a few hours ago from Hayden's physiatrist in St. Paul, MN. Dr. Deshpande agreed that Hayden's tone has increased in his legs. To our surprise, she also found increased tone in his arms. There is a catch in his right bicep. He moves righty around like crazy, so it must not bother him too much. We have been so worried about his legs and what the increased tone means for his hips and his mobility, I don't know how we will manage if he have to try to find the time to work his upper body as much as his lower body. Thank goodness for our nurse! The Botox and Phenol are helping so we are going to keep going with that course of treatment. She wants to see Hayden back in 2 months for injections. The phenol will be used on his adductors and hamstrings and the Botox on his calves and left tibialis muscle. I get the feeling that she is trying to buy us as much time as possible before more invasive treatment is needed. Since Hayden has not yet seen an orthopedist she is going to set up an appointment for him to be evaluated and get to know them since we will be visiting them often as Hayden ages.

It was an exhausting trip as always, but a good one. We are still concerned that an increase in tone was noted in his upper extremeties. Guess that is one more thing to add to our ever growing list of things to work on. That news made the big hug from Nicholas even better when we finally got to see him. Don't get me wrong. I am not complaining about the ever growing list of things we have to work on with Hayden. We feel very blessed that he is in our lives and that we have the opportunity to have all of these things to work on with him. A child with special needs is an amazing and wonderful gift from God. We are very fortunate he trusted us to take care of two very amazing boys!