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Progressional Diary

May 29th, 2009

by Anonymous on Thursday, May 28, 2009 10:00 PM
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....

May 19th, 2009

by Anonymous on Tuesday, May 19, 2009 1:00 AM
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...

May 18th, 2009

by Anonymous on Monday, May 18, 2009 1:00 AM
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...

May 11th, 2009

by Anonymous on Tuesday, May 12, 2009 1:00 AM
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.

...

May 6th, 2009

by Anonymous on Wednesday, May 06, 2009 1:00 AM
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...