Progressional Diary

September 28th, 2009

by Anonymous on Sunday, September 27, 2009 10:00 PM
A good friend and supporter sent me an email the other day after reading the diary and stated how he likes that the kids celebrate what they can do instead of worry about what they cannot do. That statement is so true and is exactly how I see the kids act most of the time. Their attitudes dealing with dystonia makes our lives easier. 

Tyler was able to get into his baseball game yesterday. His coach gave him a new glove to use on his right hand so he played right field. My mother was in town for a few days so she was able to see the games. Samantha and Luke also came and watched (Luke just ran around). 

My mother and I are at the beach for a few days and Luke asked if he could go with us. When I explained to Luke that he could not go with us because he had school, Luke said, "no Dad, I am going to cut school." I asked where he heard about cutting school(naturally I figured his mother taught him that) but he said he learned it from tv.



September 21st, 2009

by Anonymous on Sunday, September 20, 2009 10:00 PM
Tyler participated in baseball this weekend with his Mustangs baseball team. It was very different because Tyler was able to go on the field and actually stopped a ball that was hit to him. He will try to stop the ball with his glove and then there is a player in the field with him that will throw it in or he will take his glove off and try to throw it himself. The Mustangs had a 10-0 lead so they were in no worry of losing. It is an experience that he or other people with dystonia probably would never get if it wasn't for the team and coaches he is on. Now he wants a glove to go on his right hand(the only hand he can use).

Samantha showed some emotion this weekend and I believe a lot of it was because she is scared about the January 20th surgery(DBS). She sits on the bean bag for comfort but cannot get up without rolling over on her side and pushing with her hands. Her back pulls.

Both Samanatha and Tyler are getting great grades and doing well in school. Luke is having fun n school and had two birthday parties to attend this past weekend.


September 14th, 2009 Fast Track

by Anonymous on Sunday, September 13, 2009 10:00 PM
This morning Samantha goes into the hospital to be "fast tracked" for her DBS(deep Brain Stimulation) surgery. Fast track means that they put you through all of the tests so that they have a baseline to work with. She does not get surgery today but tthey test her functions and tell her what to expect. Everyone is a little nervous about the surgery. I feel like the more times we do a surgery like this the larger the risk of something going wrong. We had also hope to hold off on surgery for as long as possible because of Samantha's age and head growth. The longer we wait the less likely her head will keep growing and the less likely the leads will migrate and require another surgery. These things are weighed with the lack of mobility. Samantha and us feel like she is better trying to get some of the mobility back and discomfort away now.

The kids all got to go see the Gators play this past weekend and had a blast. Michelle took them while I attended the Dlorida Society of Neurology conference in Orlando. It was worht meeting some new contact for the foundation and the exposure to nuerologists all over the state of Florida.