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Progressional Diary

February 24th, 2009

by Anonymous on Tuesday, February 24, 2009 12:00 AM

Tyler is doing great. He had a programming to help tweak the left side some. He is walking better and talking a little better. He can extend his left arm and hand. He can even write in the lines on notebook paper which is huge. Before it was so big it would not even fit on the paper. He still used his dynavox and computer for most schoolwork but likes to write his math out. He applied to middle schools and the letters are due back this week. . .

February 15th, 2009

by Anonymous on Sunday, February 15, 2009 12:00 AM

Tyler has been having some ballistic movements on his left arm. Dr. Okun thinks that it could be a good sign because he is due this Thursday for reprogramming and this may be a sign that they are in the right area as well as remapping of the brain . . .

February 6th, 2009

by Anonymous on Friday, February 06, 2009 12:00 AM

The secret Pal delivered some birthday gifts for Samantha. Samantha went for her weekly casting but her foot and ankle were pulling too much to recast her foot without significant discomfort. They put her in a type of splint which allows her to take it off and put it on when she wants. Tonight is her birthday party. She has nine girls over for a sleep over. . .

February 2nd, 2009

by Anonymous on Monday, February 02, 2009 12:00 AM

Tyler had baseball practice yesterday and was able to hit the ball off of the tee and run each of the bases without his chair. It was very fatiguing for him but it was also really cool. Tyler’s participation at any level in these team sports helps in a myriad of ways. . .

January 27th, 2009

by Anonymous on Tuesday, January 27, 2009 12:00 AM

I have been very proud of Tyler for his hard work lately. Tyler has been reading a book outside of his normal class work. This has been difficult for him but I try to impress upon him how important reading is. Last weekend the Mustangs (Ty’s baseball team) had a tournament down in Leesburg Florida. On Saturday we went for the first game that they lost to the state champs 3-2 with our bases loaded. . .

January 17th, 2009

by Anonymous on Saturday, January 17, 2009 12:00 AM

Tyler started back to OT and PT. OT will help with his left wrist and they will redo his brace for that hand to wear at night. PT is to retrain his walking. They will work on strength training in his legs. He will do some weights and treadmill work. The PT is concerned about his back and neck. His neck and spine turn some now and he is concerned that since he is still growing that it will grow that way. . .

January 12th, 2009

by Anonymous on Monday, January 12, 2009 12:00 AM

On Saturday myself and two Tyler’s Hope board members, John Marti and Patrick Banis built garden boxes at Tyler and Samantha’s school. We worked from 9-2pm and had a blast with a bunch of other kids and some other parents cleaning up an area at the school that needed some help. We planted trees, gardens, built sitting benches, and planted a hedge of bushes. There was no other reason for my friends to help this school out except that they are good friends and good people and they took their Saturday to help people that needed it. . . .

January 7th, 2009

by Anonymous on Wednesday, January 07, 2009 12:00 AM

I have been dealing with our health care coverage for two months now because Blue Cross and Blue Shield of Florida has my families plan all screwed up. They first canceled my insurance because they said that I was terminated??? Funny thing is that they did not refund any of my money from my payments for the past three months. They also entered my daughter name . . .

December 31st, 2008

by Anonymous on Wednesday, December 31, 2008 12:00 AM

 Last day of 2008. We made some very good progress this year with research and with helping kids, families, and others struggling with their Dystonia care. I have been getting excited because I believe that something huge will happen for us in 2009. Some breakthrough or big stride towards a cure and treatments will happen. Some big celebrity or pharmaceutical company will step up and develop something new. . .