Progressional Diary

December 20th, 2009

by Anonymous on Saturday, December 19, 2009 9:00 PM

Samantha continues to be very uncomfortable and shows more ballistic movements. Sammy's body seems twisted all of the time and her neck stays pulled to the right. We received her directions and preparation information for her surgery in exactly one month (January 20th). Samantha is excited about shaving her head because she is going to donate her hair to locs of love but she is anxious about the surgery.

All three of the kids were given the task of choosing a charity to give their money to. Each was able to give $15 and each chose a different charity. Tyler and Samantha looked their charities up on the net and were able to tell us what it was for. Tyler chose Peaceful Paths, Samantha chose March of Dimes, and Luke chose the Lineberger Cancer Institute in honor of Mary Brooks Seagroves (because they saved a mother).  Michelle and I will be cooking dinner at the Ronald McDonald house on December 30th with my company.



December 8th, 2009 The nightmare continues

by Anonymous on Monday, December 07, 2009 9:00 PM
 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...