I grew up with four older siblings and do not remember fighting with them as much as Tyler, Samantha, and Luke fight now. It is very clear that they love each other and will help each other but I truly understand the phrase "fighting like brothers and sisters" now.
The foundation is making great progress through mainly the efforts of Anne Soeder in bringing together an international patient driven registry. The researchers and some foundations are behind this effort as well. Emily Goldstein celebrated her 12th birthday recently and has raised a good amount of money for Dystonia research through their Tyler's Hope support group in California. We continue to get checks and other donations in from their group.
A national magazine called PainPathways recently ran a story about Dystonia and Tyler's Hope. It was well written and creates a lot of awareness. I will be posting the article on the site very soon.
Tyler has been doing great. This week he has had more pain with his wrist and has more movements and overflow to the jaw. He gets programmed this Thursday and that should help. He has been working hard on his Social studies paper that counts as his semester grade for social studies and writing. He also had a book project where he had to create a cereal box based on the book he read. He had fun with these projects and did a good job.
Sam is doing alright but her balance is off more so she tends to fall more. She was fitted for her brace on the left foot and it should be done in a few weeks. Her arms are progressing and it is getting harder to write with the left arm too. This progression does not seem to affect her dice throwing when playing Yatzee. It is also harder too type so we may be looking into voice recognition for her computer at school. She is doing great in school and learning her times tables.
Luke wants to be an astronaut and his "girlfriend" does not so he told her that he will miss her. Got to love him.