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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Samantha has been having some sharp pain in her abdomen where her battery pack is located on the right side. Dr. Foote is concerned that this is the first sign of an infection. They called in a presription for an antibiotic that she started taking.

Today I came home a little early from work because Michelle is very sick with the flu and Tyler just called bcause he is sick also. When I picked him up, he had just started throwhowing up. Today I get a small taste of what "the saint" (Michelle) does all of the time. I have Samantha needing me to write her homework and help her while Luke is running around getting into everything. Michelle and Tyler are throwing up so I bring them water, cold towels, and whatever they need helpe with. I try to stay connected to the business so I have the phone to my ear half of the time. Sickness doesnt help the dystonia because fatigue and stress exasperate the symptoms.

I have spoken with several families lately that found out they know someone that has been diagnosed...

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Samantha continues to have some pain but continues to have less pain from her surgery every day. She went to her fisrt Deep Brain surgery programming on Thursday but we have not seen improvements yet. It is still early so we are not concerned with not seeing anything yet.

Tyler was checked last week for his programming and they found that he will need to replace his battery pack on his left side very soon. We are scheduling for it to be taken out and replaced the end of next month.

Samantha has a hard time sleeping at night. It is hard for her to lay flat on her back because it irritates her staples in her head and turning on her side is very difficult. She has adjusted some and is sleeping a little better but for several nights we have been up all night with Samantha.

Luke has woken up on several occasions and complained about his legs hurting. It is always when he is tired and I am not sure if they are sympathy pains beause he hears his syblings or growing pains or worste of all posibly...

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Samantha had the second part of her DBS surgery yesterday where they implanted the battery boxes into her abdomen. We arrived at the Hospital at 6am and she was in surgery by 8am. A lot of people recognized her from the Gainesville Sun article and some asked her if she was the girl from the Lacrosse game. It was really cool and she felt like a famous person. The surgery lasted until sometime after noon. Samantha had a hard time coming out of her anesthesia and was emotional. We ended up leaving the hospital around 5pm and headed home. Samantha has a lot of pain but we expected that. She has a hard time moving her neck and her stomach hurts from the incisions there. She had six different incisions> four in her head to run the wires down to her stomach and then the twp om either side of her stomach. She has 19 staples in her head but the surgeon only shaved a little area on her head rather than her whole head. She was turned on yesterday and will recieve her first programming this coming Thursday. We appreciate all of the well wishes and emails.

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