Progressional Diary

October 30th, 2010

by Anonymous on Friday, October 29, 2010 10:00 PM
The secret pal stuck this past week. They each got five dollars and were very excited.

Last night was a real adventure. Tyler decided to have a sleep over for his upcoming birthday on Election Day. We worked on the bus and got it night ready (fixed running lights and head lights). We piled 9 13 yr old boys and Luke onto the bus and took them to the Corn Maize in Newberry Florida. The corn maize is pretty spooky and there were some rides for Luke to take that were not as scary. We stayed on the corn farms until around 10:30pm then came back to the house where the boys decided to play some game that is similar to hide- and- seek. Since they were all on the golf course hiding, the sprinklers came on and soaked many of them (that was funny). They all went upstairs and did some kind of wrestling base on the noise. Around 2am I went up to find that someone had mased all of the kids with copious amounts of AXE cologne. After settling down for about two minutes they snuck downstairs and raided the pantry for chips...

October 24th, 2010

by Anonymous on Saturday, October 23, 2010 10:00 PM
Tyler turns thirteen on Novemeber 2nd. It is hard for me to believe. Some things are good because he is not in his wheelchair while some things remain huge concerns. Tyler has not put on a pound of weight in two years. He works dilegently at trying to get enough calories into him but does not seem to be making progress. His grades are great and he amazes me how smart that he is. I am not sure what to do next except support his abilities and fund money for the cure.

Samantha is in simialr shape except the symptoms show up differently. Samantha is in a wheelchair all of the time and her back/neck pull  a lot making her uncomfortable but she speaks and eats fine whichis the difference between her a Tyler for the most part. Samantha started a series of casting of her left foot to try and straighten it and give her some relief.

Luke is the big deal for us right now. I am very worried that he will start having symptoms. Yesterday I told Michelle that I thought I saw his foot turning in when he ran. She...

September 10th, 2010 or 10/10/10

by Anonymous on Saturday, October 09, 2010 10:00 PM
We held the first Dystonia International Patient Registry webinar this past week and it went very well. More people have signed up for the registry and are getting the word out about its importance. It was recorded so we should be able to share it in the near future.

The "Season of Hope" Run will be held on December 11th and it will benefit the Tyler's Hope center at UF. There will be a 5k and a 15k run. I will post more information on the calendar soon. The courses have been layed out and measured and it is now on

Luke is alread in a k-1 split working at a first grade level. Luke has been learning to sound words out and has read three books tonight by sounding out all of the words. He really is starting to excel in his learning and it is fun to watch.

Samantha continues to have some difficulties with her dystonia and has not made much progress with her feet. She went to get reprogrammed last week. She is still waiting to start her serial casting but it was delayed due to a change...