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 that things are not always as bad as they seem.
This last weekend has reminded me of the great things and the difficult things that we become accustomed to. For instance, we are used to Tyler being fed by a feeding pump and struggling with food and weight gain. We forget that he is a kid and doesn't want to have a tube sticking out of his belly or be fed hooked up to a pump each night. Tyler does not complain so we go about things as routine. Dystonia is horrible and we will win this battle but we need to hurry up.
Samantha had a great time at the fund raiser in Raleigh with her mother. There were parents and kids involved and they vowed to do more fundraisers and awareness projects. Samantha's cousin Christy, sang Sammy a song ("hero") and Michelle cried.
Luke swam a lot this weekend and wanted to show his brother and sister how well he was swimming. Luke and Tyler wrestle a lot.