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Progressional Diary

June 10th, 2009 Week without MOM

by Anonymous on Tuesday, June 09, 2009 10:00 PM
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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June 5th, 2009 Last day of school

by Anonymous on Thursday, June 04, 2009 10:00 PM
 

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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June 1st, 2009

by Anonymous on Sunday, May 31, 2009 10:00 PM
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...