It seems like our focus has been turned a lot towards Samantha. Tyler continues to deal with symptoms of his dystonia that most people could not comprehend but his resilience has afforded Michelle and I some tie to deal with the next wave of unexpected symptoms. Tyler no longer uses his wheelchair which allows him to have much more independence with simple things to us like using the bathroom. He still needs help with those type of tasks but not as much as he once did. Tyler also gained 3 lbs on his last visit which is huge for him.

Samantha on the other hand has progressed rapidly as of late. Her ability to manage by herself has drastically decreased. Management of her symptoms are nothing to us because we do not mind doing whatever it takes for her but sometimes we are helpless to give her comfort. Both psychologically and physically she has been much more uncomfortable. I am staying up each night now and not sleeping again trying to do as much as I can while I am home. I watch my daughter have difficulty getting into a chair. I watch her spend a lot of time just trying to move her leg with an arm that is not cooperating but she does not want to complain. It is very laborious for her to accomplish anything because it takes all of her power and will to do simple tasks. She needs help with her clothes, using the bathroom, sitting still, and most physical functions. She, unlike Tyler does not have a problem with her ability to eat or talk yet. Remember hat she and all kids that have this disorder have at one point lived without it and it has to be a constant reminder of living like they are in a locked up jail cell.

There are a lot of collaborative efforts in research all over the world now that never existed and I am excited about the amount of dollars being invested in solving this disorder. Although the amount is nowhere near most other diseases and disorders, it is encouraging to know that it seems to be drastically increasing and the foundations have started to work together with the Feds which also has given recent focused grants for dystonia research that have not been provided before.

The Secret Pal has struck several times since the last update with gifts for birthdays and for the holidays. This really cheers the kids up and makes me feel good also. Thanks again Pal.