Tyler had six boys over this weekend for a sleep over. Since Tyler's birthday is Novemeber 2nd they celebrated early with the sleep over and then the next day they went and played paint ball. They had a lot of fun. After staying up all night and playing soo hard, Tyler slept most of Sunday. We checked his batteries on Monday morning because his left side was pulling and uncomfortable and we found that he was turned off. This showed us that although the system isn't perfect, the DBS is working.

Tyler and the six boys came to Michelle and said they all want to do something for Samantha's surgery. They said they want to raise ten thousand dollars in honor of Samantha before her surgery. They said they will all dye their hair pink if they can do it. The coolest thing about them coming up with this idea is that we had nothing to do with it and these kids wanted to do something for Samantha although they give her a hard time all the time. Pretty neat to have an idea to help a charity when you are 12 years old...

Read More »

Samantha is set for surgery on January 20th and on February 26th, 2010.

Recently there has been coverage in the news media about a woman developing dystonia after receiving a seasonal flu vaccine. Tyler's Hope for a Dystonia Cure is not aware of any information or research showing that the seasonal flu vaccine causes dystonia. As with any medical procedure or treatment option, Tyler's Hope for a Dystonia Cure encourages you to discuss the risks and benefits of getting the seasonal flu vaccine with your doctor. Tyler participated in batting practice this weekend with his team, The Mustangs.  Here is an email I received from his coach today:

 

Tyler's smile yerterday and the way his teammates rallied behind him were the highlight of the year for me.  We played a stick ball game and we have special lines for the boys to hit past to get a single, next level a double and hitting the fence is a triple.  I also make marks for Tyler. (I told Tyler if he hits the ball to one of the clay areas like...

Read More »

Yesterday Tyler and I went to the Jacksonville Zoo on a field trip with his class. Tyler was able to go without taking his wheelchair. My group of boys were some of Tyler's good friends so I spent most of the day trying to keep them focused. I was looking at the animals while the boys wanted to ride the merry-go-round or run through the bamboo playground. I got them to at least look at all of the exhibits because I had rented Tyler a wheelchair when we got there and the kids liked riding on it. They would sit on the arms of the chair and on Tyler's Lap. It was a long hot day and Tyler got worn out. When we arrived back in Gainesville, Tyler fell walking to the car. A lot of his fall had to do with his fatigue. He scraped up his knees and elbows on the cement and was embarassed. I carried him to the car after that.

Samantha has a cold but is doing well. Her back and ankles keep her uncomfortable because of the dystonia. Her school work continues to be great and she does some of Tyler's Math problems just...

Read More »

Tyler had a big weekend of baseball games in a tounrament about an hour north of where we live. The Mustangs ended up losing in many extra innings but played great. Tyler played in both of the first two games. Coach gave Tyler a right handed glove(cannot use his left hand) and he plays in right field. If he gets a ball hit to him he will either take his glove off and throw it in or give the ball to another player near him to throw it in. He really feels like part of the eam now because he gets in and I can see him look over and make sure I am watching him.

Samantha has had a rough week. Her back is pulling a lot more and it is uncomfrotable in just about an position(sitting,standing, or lying down). She rarely complains. She is scared but also ready to have the Deep Brain Surgery in January. We are hopeful that it will give her some relief and more control. She is doing fantastic in school and works hard at it. Tyler and Samantha both have all As in their progress reports.

Luke is still not showing...

Read More »

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.

 

...

Read More »

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.

...

Read More »

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.

...

Read More »

I went to meet my syblings in NC this weekend to get some closure to my father's house and divide up the heir looms. I was not looking forward to it as many will know or find out that syblings have different agendas and deal with things differently. The weeks leading up to this past weekend made me dread the process. I will say now that it is over, things could not have gone better in my eyes. We had a huge fight early that was worked out and it probably let all of the air out of other fights. Everyone ended up getting the things done that my father would want without fights. It ended up being very good for our relationships which is most important. It was emotional to go through my parents things in order to close the house. My father was a big supporter of Tyler's Hope for a Dystonia Cure and will continue to be through his estate gift to the foundation.

Tyler has been  meeting new friends, getting to know his baseball team better(won both of the double headers this weekend), and reading. I am very proud...

Read More »

School is in full swing now and each of the kids goes in a different direction since they are all at a different school. I try to take Luke to school while Michelle take Samantha and Tyler in the truck so that she can bring their wheelchairs.

Tyler has been walking so well lately that he was able to take the bus to school yesterday. It is a long work for him but it gives him independence while saviing us time and money. Tyler worked with his aid today and had a good day at school. He has started to go to physical therapy again because his hips are starting to slide up. He puts almost all of his pressure on his right leg when he walks and the left leg is shorter. His physical therapists is trying to stretch his hamstrings and hips instead of having surgery. He is doing well right now.

Samantha is getting worse and is showing more symptoms. She is more uncomfortable at times now. Her back twists and her arms are bad. When we play chess or uno she needs help now. She is getting very pretty and slender...

Read More »

People with dystonia deal with daily challenges that we forget about. We have become accustomed to them so we do not talk about them as much but they don't go away. Small tasks to numerous to describe are real challenges. I wish I could call all of the people we have met that are dealing with dystonia every day and just encourage them to stay positive until we cure this nastiness. As my good friend Brian said this weekend, "it is just unacceptable".

I had a great meeting with some advisors yesterday and we will be voting on some very good research projects next week. We have several grants we will fund this month.

As a reminder of what this disorder is like, I have a story that is just a small perspective of what these kids deal with each day. Tyler and Samantha don't complain so we forget what they are doing until we take a deep breath and watch. Tyler wanted to sleep in his own room upstairs last night so he could get some good sleep in his bed. About a half an hour later we thought we heard Tyler...

Read More »