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Progressional Diary

Monday April 26th 2010

by Anonymous on Sunday, April 25, 2010 10:00 PM
Tyler had his battery replaced on Friday. The surgery did not take long although the day was long between getting him in and letting him go home. The surgery went well but Tyler has some pain in the healing process from them cutting into his muscles and chest. The battery that was relplaced is the one that controls his good side of the body(right) and was in his left pectoral. Tyler's bad arm is on that side and has been pulling upwards lately which puts more stress on the incision area. He continues to be a real trooper though and went back to school today.

Samantha has not seen a lot of benefit from the surgery yet but seems to have a little more stability and is able to sit up and pull herself up more now. She looks very cute with short hair because I can see her face now but he hair continues to grow out.

Every day I worry about Luke and watch to see if his arm shakes when shooting a basketball or if he is abnormally clumsy but I can't tell anything for sure yet. He is very energetic and has now graduated into kindergarten for next school year.

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April 13th - Back to school

by Anonymous on Monday, April 12, 2010 10:00 PM
Back to school today for Tyler, Samantha, and Luke after a week of sping break. We had a great time all week at the beach with the kids. There were some real challenges with Samantha and getting to the beach. We brought the Jeep out on the beach eventually and that solved our problem. The kids saw lots of friends and were able to play with them when they got tired of Michelle and I. Luke learned how to play lacrosse and is pretty good at it. He catches some of the balls and can handle the stick pretty well and throw the ball really well.

Luke has been worrying me lately. It is getting closer to the age where symptoms would show up if he was to get dystonia. It is probably a little early because Samantha and Tyler didn't show symptoms until they were seven years old. It scares the crap out of me and Michelle. I really hope he doesn't get it. He spilled some things this past week and of course my first thought isthat he is having troubles but it was more than likely that he was tired from swimming and playing....

April 4th, 2010 Easter Sunday

by Anonymous on Saturday, April 03, 2010 10:00 PM
We are spending Easter in St. Augustine Florida at the beach. The kids are on spring break.

A few days ago Luke tried to get to close to Gator while he was eating a raw hide bone and either was scratched or bit. He ended up in the ER until around 3am and recieved two stitches in the skin right under his right tear duct. The stitches are long and get into his eyes. We bought some steri strips to try and tape them down and away from his eye. He is not able to swim for 7 days because the stitches are dissolvable.

Tyler has been doing well except he was thrown into the pool (pushed his Dad to far) and his cell phone doesn't work anymore. He had his cell in his pocket. The cell phone is his best way to communicate.

It is very difficult to get around at the beach with a handicapped child but two handicapped children is extremely difficult. Samantha is not light and in order to go from the pool to the beach I have to carry her. The wheelchair will not go on the boardwalk or the beach. It is very tiring and the worste part is that Samantha knows it is difficult and feels bad about it. Once on the beach the challenge is going from playing in the sand to sitting in the water. Sammy's feet are cut and scraped up from her trying to walk in the pool.

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April 1st, 2010

by Anonymous on Wednesday, March 31, 2010 10:00 PM
Since today is April fool's day, I thought about writing something totally off the wall and outrageous but I decided against it because I want people who read this diary to remember how serious this disorder and our mission is. It seems that we are making some progress in the research for finding a cure for dystonia. Several recent papers have been published about the discovery of some drugs that may be effective in treating dystonia. Soon there will be clinical trials run and this makes it even more important to sign up for the registry if you are a dystonia patient.

At times I wonder how life could be different and the things we could do if we were not constantly fighting the battle with dystonia. That doesn't last long but it makes me look deeply into my family and the daily tasks we both take for granted and the ones we are thankful to be able to perform.

Tyler received his botox injections yesterday in his jaw and his arm. The botox injections will help him close his jaw(he has been having a...