This week Michelle and Tyler went on their trip to Washington DC with Tyler's class for the annual safety patrol trip. I am not sure who was more excited about the trip, Michelle or Tyler. Tyler was able to take his electric wheelchair on the bus. Michelle said they walked many miles the first day so it is very good that the school was able to work out a handicap accessible bus. The bus driver has been very good to Tyler. Having his chair is essential for him to be able to keep up but it would have been worse with his dystonia acting up due to fatigue. The fatigue comes from lack of sleep. They did not sleep much on the 16 hours bus trip and I don't think Michelle is getting too much sleep now.

I have been enjoying spending time with Samantha and Luke by myself. We have been swimming a lot and last night we went to Yamatos for dinner. We saw Tim Tebow there last night. For those of you who do not follow football, Tebow is most likely going to be considered historically as the best college player ever but the thing that is most inspiring is how he motivates others by being such a good/caring person. Tebow is a real role model.  Samantha is not a small girl so it is much more difficult for me to pick her up than it is to pick up Tyler. Her left foot is very turned in right now but she is due for more botox in a couple of weeks. We play games while swimming but it is getting more obvious the difficulties she has with her legs and arms when she tries to swim. She loves to swim but you can see how hard it is to propel yourself without the ability to control your leg movements and even raise your arms over your head to swim.  She has been killing me in games like UNO.

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Today is the last day of school for both Samantha and Tyler. We are very proud of them both for doing so well. We know of so many dystonia sufferers that are unable to continue to go to public school or struggle because of medications and symptoms. Sam and Tyler are definitely fighters and excel regardless of their dystonia. Sam and Tyler both received principal awards, which means they had good attendance and good grades throughout the year and bug awards which means they brought up a grade without dropping any. Tyler received the President's award for maintaining a 3.8 or higher all year and earlier this year he was awarded the citizen of the month award.

Today their school gave out the Tyler Staab Award again to the student that is chosen to have excelled academically, never gives up no matter what challenges they are faced with, is kind to others, shows integrity, etc… This award is given each year by Mr. Hall who comes up from south Florida to present the award to the student and parents of the winner. This year's winner is Yuanqi "Reggie" Cai who received every award possible including perfect attendance. Yuanqi Cai received a trophy, his name on a plaque at the school as the third recipient of the award, and $750 was donated to Tyler's Hope for a Dystonia Cure in his honor.  

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The first day of the hurricane season.

I started writing this blog when Tyler was diagnosed so that people could understand what dystonia is like as he progressed. I found out that the blog acts in many ways that I did not anticipate. Doctors from overseas have emailed asking about updates because of their curiosity with the progression of the symptoms as well as the treatments. Patients and families have emailed me saying they read it to see what to anticipate with their symptoms or loved ones. I try to give some insight into what we as a family deal with while dealing with generalized dystonia. I rarely if ever talk about too many things outside of what is directly affected by the dystonia. There are many struggles and great things that happen to us as a family that I could not put into a blog. Everyone has their own struggles but by airing out some of my families dealings with dystonia I have seen where it has an impact on individuals that may normally have taken things for granted or need a subtle reminder...

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This weekend is the Garden Party fund raiser in Raleigh held in honor of Samantha. Samantha was excited because she and Michelle were able to fly up for the event. It will be a great girl’s get-a-way.

Michelle and Samantha were concerned with how they were going to get around in North Carolina since Samantha needs a wheelchair most of the time now. They called the airlines and were told they could ship the chair through or even leave it planeside as they took their seats. Things never go as smoothly as people say they will. Their flight took them through Atlanta with a two hour layover. They sent pictures of the two of them making faces and playing around so I was happy they were having fun. They asked the check in desk if they could preboard and go to their seat first so that Samantha would not have as much difficulty going down the aisles as one of the last on the plane. They were told that would be fine but when they tried to board the plane they were told they had to wait for their zone to be called....

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Samantha has been feeling some pain and complaining of her body jerking and pulling. Her left foot is also turning in more. I spent some time last night trying to flex her ankle and foot but it was harder than usual and she grimaced some in pain. Although we do not talk about it much, I am a little worried of how her symptoms will progress. Will it affect her back? Will it affect her speech and eating like Tyler? What is the next area we will need to deal with?  I just found out that the secret PAL visited the house today and brought Samantha a cool orange and blue bracelet for her first communion. She was suprised and after all of ths time we still don't really know who the PAL is.

I almost feel guilty saying "we" because my kids and others live with the pain physically and have to endure the handicaps that we do not have to. It will eat you up thinking about how dystonia affects people and you cannot help. I will do anything for my kids to make them feel better and have the same advantages as others but...

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The in-laws from Miami came into town to see Samantha's first communion. My father-in-law is Jewish so it was big to get him to the church for Samantha. We caught him trying to take the money out of the collection basket until we told him to put money into it. They are good people and always support the kids and us very much.

Samantha did great at her first communion. She looked beautiful in her dress. Samantha has had difficulties walking as she has progessed so she was in a wheelchair throughout the first communion. A friend of hers, Grace, helped push her chair and it was really nice. Samantha's aunt Barb drove down from Atlanta to support her as well. Samantha's godfather spent all day with her and was wonderful to the kids as always. Between getting her godfather back into church and getting my father-in-law into a church, I was looking around for some crazy excitement to start up. If you know either one of these guys you would understand.

I spent about 35 minutes last night stretching Samantha's...

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A local family magazine is doing an article about the Tyler's Hope for a Dystonia Cure Foundation and were taking photos of the kids at a park this afternoon. While taking the photos, a lady named Misty from the Leadership Gainesville class came over to Samantha and asked her if she was Samantha Staab. Misty explained to her that she was familiar with the foundation and with how much love and kindness that Samantha had given Tyler while dealing with his dystonia. She said that Samantha was her hero and she admired her for her courage and strength. I was not there but I am recapping what Michelle told me happened. This was very big because Samantha hardly is recognized for her efforts and strength. That small act of kindness both helped my family and taught Samantha important things. Thank you Misty!

Samantha is having a harder time walking lately. Her difficulties are most likely the natural progression of dystonia. She continues to do well in school and is some kind of grand wizard at board games like CLUE. She kicks our butts all the time.

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Tyler and Samantha having been working with Michelle on the annual walk-a-thon fundraiser for Tyler's Hope that their elementary school is holding on Friday. The students and the teachers have really made this a fun event. Each participant gets a Tyler's Hope for a Dystonia Cure t-shirt. So far both Tyler and Samantha have raised over $800 alone.

Tyler has been busy with school, the Mustangs baseball team, the fundraiser(walk-a-thon), and a science project he is working on.

Samantha has been busy with school, classes for her first communion at church next weekend, and the fundraiser.

Luke has been planning his future and we were able to go hit some golf balls. He has learned to be a good basketball dribbler but I have not taught him anything, he has learned on his own.

After reviewing the recent proposals by the University of Florida marketing students, we have heeded their advice and interviewed more interns for Tyler's Hope. Today we placed the events planner internship with an energetic...

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The secret Pal hit again yesterday. Each of the kids got a flameless candle nightlight that projects cool images. Last night was the first night in a long long time that all of our kids were able to sleep upstairs in their rooms. Normally they sleep on the couchs, beanbags, and downstairs bedroom together. Luke has been sleeping with Michelle and I in our bed with us when he allows us to have some room. This was a big step. They were able to do this because Samantha can walk some with her new brace and Tyler has been able to walk more. Some of our worry has always been Tyler's ability to make the bathroom or call for help(can't yell or talk well). Tyler is older and it is not as scary for either of us because we know he will take care of whatever arises at night now.

Tyler has been going to school without using his wheelchair. I am sure that it is difficult for him and he gets tired by the end of the day.

Samantha went to school today and never used her wheelchair. She was able to walk all day with...

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Today is going to be different. Normally we celebratemy father's birthday today. He wasn't big on presents so if we were near each other we would play golf, if we were not, he would play golf. My father was not happy about thekids having dystona and stressed about it. I know if he has a say from above that he has it cured.

Tyler was sick yesterday so he didn't go to school. He is feeling better this morning so I ams ure he wil go. Ty does not like to miss school. It is very difficult for him to get caught back up. Tyler's left hand has improved. His fingers stay straight now where before they would curl backwards and show more seperation. He goes to programming every six weeks now instead of four weeks. Sometime during the fifth week his dystonia starts to get worse so it makes it easier to see the programming when he goes to the office on the sixth week. His tube has been itching him. It is time to replace it but noone like to do it so he puts it off.

Samantha gets her brace on Friday and she is...

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