The Summit has ended and it was huge success. A big thank you goes to Medtronic for their sponsorship of this year’s Summit and to MT Chophouse restaurant, AP Limo, Fresco’s restaurant, and Coke. Jen Reichwage, the Tyler’s Hope Center coordinator organized this year’s Summit and deserves credit for a lot of its success. I believe we will see some breakthroughs in research this year.
We are moving forward with the international registry and have garnished the support of other groups such as the DMRF. The registry will soon be offered at doctor’s offices, clinics, and on line. It is named DIPR for Dystonia International Patient Registry but I liked the play on words with the star from Tyler’s Hope and this being named the "dipper."
Tyler had botox last week and seems to be moving his left wrist better. He had FCATs all week and was able to finish them in a timely manner. He takes the science FCAT next week. He is reading his book right now and he will be going to the Gator Nationals Races this weekend. AC Delco has invited him to their box to watch them. He is working on his civil war project. Tyler appears to be improved.
Samantha had Botox yesterday. They injected both legs again with four shots on her left calf and two shots on her right calf. She was scared and worried before going in to get the shots but did really well when it was time to receive them. It is becoming harder for her to write with either hand and she is asking her aid to write more for her. Their school, Williams Elementary is doing the walk-a thon on May 8th for Tyler’s Hope again. We feel this is great for the school to do because it helps them understand what Sammy has and what she is going through while educating them on Dystonia.
Luke fought off his cold like a Jedi and is feeling better. He explained to Michelle and I what a paleontologist does. Although we are constantly on the lookout for symptoms of Dystonia, he is not showing any signs.
The secret Pal came by the house and left all of the kids a dominos game set.