Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech, and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement.
It can also mean, muscle weakness and is typical of individuals with cerebral palsy.
Last Tuesday was a long day. We left the house before 8:30AM and didn't get home until after 5:30PM.
The Spasticity Clinic Evaluation consisted of an evaluation with PT and OT in the morning and a Psychology evaluation after lunch.
We added a couple extra things to our schedule while we were at the hospital: after our PT/OT evaluation we had a communication therapy session before breaking for lunch.
After the Psychology appointment we had about an hour break before going to Kevin's Dance class offered at the hospital.
During our breaks we were able to sit outside in the sun, use the walking path outside on the hospital grounds, and explore some new parts of the hospital. And guess what we found!? A family changing room for big kids/adults. Yay, hospital visits just got easier!
I wasn't too nervous about the evaluation with Physical and Occupational Therapists because the OT we have been working with in our AAC sessions and Kevin has been very comfortable with her. So I felt like that would help Kevin feel less stressed and fearful during the evaluation. But it did get stressful. I realized later after we were home, that I think the turning point was when PT asked Kevin to creep on his hands and knees. Probably brought back bad memories of all the YEARS of crawling and creeping he has done. And it went downhill from there for a while. He was mad. Trying to hurt me, throw things. The OT, left the room and brought back the Talker we have been using with her in our AAC therapy sessions. When she returned and gave Kevin the opportunity to use it - he immediately said STOP (as in I want to stop this evaluation)! And I think after that he said GO (as in I want to go, get out of here). Very appropriate. We gave Kevin a break to calm down - while they asked me a bunch of questions to answer in regards to the spasticity evaluation. He eventually completed most of what they needed to evaluate him on.
I had received a lot of paperwork in preparation of our evaluation with the Psychologist. The questions gave me so much anxiety that I couldn't complete it. I tried to let Jon do it but his answers were giving me anxiety too so we just quit. So never having met with a Psychologist, I began conjuring up fearful thoughts in my head about what this evaluation was going to be. And of course it was all in my head and as soon as I explained what happened with the questionnaire she quickly interceded and told me that she had a more appropriate questionnaire to use for Kevin instead. I also ended up feeling like this was a great addition to the evaluation. It will give the team a clearer picture of what our goals and intentions are with Kevin.
At the end of this long day, I was not expecting much from Kevin by taking him to his (second) Dance class (the first class didn't go smoothly). But he surprised me by joining in with my help and participating. He even smiled during the parachute activity. I was very proud of him!
In two weeks we will meet with the entire Spasticity Team of doctors and therapists.
Basically the Spasticity clinic will help us determine if Kevin needs surgery to help improve his walking and how soon or how long we can wait to do this. They will help us make a plan for this which is always a high priority for us. My biggest fear, regarding surgery is I don't want him to lose the walking ability that he currently has. But I desperately want Kevin's walking to improve and what if we have the surgery and then we think - why didn't we do this sooner! At this point in time, communication (with Kevin's new Talker) and improved distance walking are our top priorities for Kevin.
No comments:
Post a Comment