The secret pal struck again this morning. The Pal left three books for the kids and a note encouraging them to read during the summer.

I have been traveling a lot lately while Saint Michelle provided family duties so I notice subtle differences in symptoms with the kids more. Tyler has been practicing baseball and very excited about the Cooperstown trip we are taking next week. Yes, Michelle, Tyler and Myself will be out of town but if you plan to rob my house at that time I would not advice it. "Guido" will be staying at the house with the kids and there is always our two trained dogs to contend with. Tyler has made some real strides in his ability to be involved and play baseball. Last week at practice his coach was hitting fly balls to him in left field and Tyler was catching them. Several people called and said how cool they thought that experience was and how other kids have grown from this experience. Kyle McGriff and other friends of Tyler’s were giving him high fives and encouragement. Cooperstown...

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I have been spending some time with my Mother who is suffering from Alzheimers. Every day I want to spend more time with my kids and family. My friends and family are so much more important to me since we have started our battle against dystonia. They have been very important and inspiring to us.

Tyler went with a group of friends to the movies. He said he won a special girl some stuffed animals but she beat him in a race game.

Samantha won the Tyler Staab award for 3rd graders. She was completely suprised and very happy. She has shown excellent character and gets straight As. WE are very proud of her.

Luke found some Batman boxers and thinks he is the Big Dog around the house now. He had his last day of school on Friday and is ready for summer.

We are nearing the end of the school year for the kids. Luke, aka Spiderman gets out this Friday. All three kids seem to being doing very well again and scored very well on their recent FCATs.

Samantha keeps telling me about the annual Tyler Staab award that her school will be giving out this Friday because she is a finalist. Both Samantha and Tyler lose their aides for next year. Tyler's Aid is moving and Samantha's Aid is becoming a teacher. This is scary going into a new year without knowing the Aid. Tyler's Aid is out on vacation the next two weeks so he doesn't have anyone to assist him while preparing for his finals next week.

Tyler went tubing with a couple friends last weekend and had a blast but he worked really hard to stay on the tube because he can only grip with one hand. Any person would have been completely worn out from a day of tubing but he was having so much fun he kept wanting to do more. I find it hard to tell him to stop even though he probably should because he is eating up...

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I was very encouraged after an excellent Tyler's Hope Summit. The discussions were lively and I have heard from several researchers that they got energized from the meeting and went back with new ideas and enthusiasm about finding treatments and eventually a cure.

Tyler has been doing well this week after a difficult week with his dystonia last week. He went for a programming last Thursday and found that he was turned up to high causing some of the symptoms to be worse. When he was turned off his left arm relaxed some so they turned his programming down and it seems to have improved some. Tyler's left arm constantly pulls upwards now and stays above his head. Tyler is doing well in school again and won the student of the week award. He has his Junior National honor society party coming up and is excited about that. I wish I was the smart growing up. Tyler continues to struggle every day with his weight.

Samantha is also doing well and has made it very obvious o us that she wants to win the Tyler Staab award at school. Michelle said it is probably down to two people and Samantha is one of them. The teacher that started this award is coming up from south florida to give it again this year. Samantha seems to be starting to get some benefits from the DBS surgery. She is definitely more mobile now although not out of her wheelchair or walking yet. It would be hard for the general public to tell how she has benefited yet but it is easy for us to tell in her daily activity.

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Today is a big day at Brentwood school (Luke's school) for Tyler's Hope. The kids will all be doing activities that will help them understand living with dystonia and other handicaps. They will do some things like wearing boxing gloves to draw a picture, take wheelchairs through obstacle courses, and do a balance beam with oversized shoes. Luke is really excited because he feels like good about doing something for Tyler's Hope. Samantha gave him $5 she had for the event.

The Principals awards are going to be given in June. The Tyler Staab Award at Williams is going to be given out again. Samantha has worked really hard to try and win it. It is difficult to give it to Samantha because everyone will think she won it because of her brother. There are some really good kids in the running for the award. They all have great grades and shown enthusiasm and compassion.

In the baseball tournament this weekend, Tyler won two Sportsmanship awards(medals). One of the opposing team coaches wrote a nice letter...

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I met with a small group of people that represent different foundations in Gainesville Florida this morning for breakfast. The foundations (Tyler's Hope being one of them) have formed a coalition to work with the University of Florida and Shands Hospital to promote and enhance the health care services for children in our community. Our first venture as a group was to work with Tim Goldfarb and others to get a dedicated area of the new ER for Children. This was very successful and we are now talking with them about creating a dedicated ER for just children at Shands. It amazes me to see how well this community sticks together and how involved people are in making our community better. I have never seen a community that does a better job at supporting and enhancing themselves. Tyler's Hope continues to benefit from the way this community has rallied behind our foundation to support our efforts to find a cure. Unfortunately my meeting with the coalition and with the University of Florida foundation later in the morning...

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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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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....

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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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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...

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