Samantha continues to be very uncomfortable and shows more ballistic movements. Sammy's body seems twisted all of the time and her neck stays pulled to the right. We received her directions and preparation information for her surgery in exactly one month (January 20th). Samantha is excited about shaving her head because she is going to donate her hair to locs of love but she is anxious about the surgery.

All three of the kids were given the task of choosing a charity to give their money to. Each was able to give $15 and each chose a different charity. Tyler and Samantha looked their charities up on the net and were able to tell us what it was for. Tyler chose Peaceful Paths, Samantha chose March of Dimes, and Luke chose the Lineberger Cancer Institute in honor of Mary Brooks Seagroves (because they saved a mother).  Michelle and I will be cooking dinner at the Ronald McDonald house on December 30th with my company.

 

...

Read More »

 It seems like our focus has been turned a lot towards Samantha. Tyler continues to deal with symptoms of his dystonia that most people could not comprehend but his resilience has afforded Michelle and I some tie to deal with the next wave of unexpected symptoms. Tyler no longer uses his wheelchair which allows him to have much more independence with simple things to us like using the bathroom. He still needs help with those type of tasks but not as much as he once did. Tyler also gained 3 lbs on his last visit which is huge for him.

Samantha on the other hand has progressed rapidly as of late. Her ability to manage by herself has drastically decreased. Management of her symptoms are nothing to us because we do not mind doing whatever it takes for her but sometimes we are helpless to give her comfort. Both psychologically and physically she has been much more uncomfortable. I am staying up each night now and not sleeping again trying to do as much as I can while I am home. I watch my daughter have difficulty...

Read More »

Happy Thanksgiving!

I have not been able to update the diary for a little while due to a recent shoulder surgery I went through. I didn't feel up for doing much probably because of the Percocet.

The kids have been doing well. Tyler has nothing out of the ordinary to report but has taken a few falls lately and it seems it is because his DBS turns off. We are trying to figure out what is causing that to happen. Ty continues to play baseball on the North Central Florida Mustangs and has seen more playing time in the field(right). The coaches are great with him and it makes a huge difference in his life.

Samantha is uncomfortable a lot. It is hard for her to sit still. Her back twitches and pulls so much that it will throw her to the ground or make it very difficult to fall asleep. Fatigue makes dystonia worse so it becomes a viscous cycle. We are all eager and scared about her January 20th date for DBS surgery.

Luke occupies his time with Sponge Bob, dancing, drawing, and playing catch...

Read More »

 

I am in Charlotte North Carolina with my mother this week. I am able to catch up on a lot of the things I have not been able to catch up on for a while but I miss the kids and "the Saint"(Michelle). I just got back from Washington DC where we held the first Dystonia Coalition meeting and it was a huge success. I am excited about what we can make happen for the development of a cure and treatments. Email me if you want to know more about the coalition but it is too much for a diary.

Reports cards came out last week. Tyler and Samantha got straight A's. Luke does not get letter grades but was evidently asked four times for his hand in marriage.

Samantha had a sleep over at a friend's house last week with several of her friends. She had a great time but when she gets tired she stresses. It is embarrassing and difficult for her to crawl to the bathroom when she needs to go. I think about how they deal with crap like that all of the time and sometimes it makes me very angry. It is hard to fight...

Read More »

How great is the Secret Pal? The secret Pal has visited the kids twice this week, once for Halloween and the other was this morning for Tyler's birthday. This is a special person to my kids and us and always keeps us positive through anonymous giving. Whoever you are I am sure you are a happy and fulfilled person.

This weekend was the 1 year anniversary of the loss of my father(Dr. Edward V. Staab) and a very important man to not just my family but many more. His impact on society, medicine, Tyler's Hope for a Dystonia Cure, and his family will not be forgotten.

Today is Tyler's birthday and he turned 12. Wow, he is growing up and as parents, Michelle and I could not be more proud of him. From Tyler's school work to his compassion for his siblings, Tyler is da man! I try to learn from him every day on how to make the best of things and be positive all of the time. I can swear to the fact that there is never a day or probably 1 hour that Tyler doesn't smile. Tonight, Tyler and I are going to Hooters...

Read More »

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 »