Progressional Diary

July 16th, 2010

by Anonymous on Thursday, July 15, 2010 10:00 PM
The 5th annual Tyler's Hope golf tournament is coming up soon and we are sold out again. I am starting to get excited as I talk with people that are also excited about this year’s event and how to make it special. A number of corporate sponsors have stepped up and we will raise a lot of money to fund research at a critical time.

The kids:

Tyler has been very busy after returning from Cooperstown NY with his baseball team. He started computer camp this week and ends today with a visit to Disney to check out their animation. It is definitely ok to think of yourself as a jock and a geek. Tyler had some pulling in the left side of his face last week. Although it was a new symptom and scary, I believe it was induced by the fatigue from Cooperstown. He seems to be doing much better. We are trying to give him extra shakes and nutrition since he was not able to take shakes in Cooperstown.

Samantha has been having pain and difficulty. She often has trouble getting to sleep at night which makes her symptoms worse. It becomes a vicious cycle and can be painful. The kids have developed a high pain tolerance so when the pain brings them to tears it is heartbreaking. Samantha is very independent and does not ever let people help her. She manages to get around pretty well but really labors at simple tasks because she won’t let us help. She must get that stubbornness from Michelle's side of the family.

Luke is as crazy as ever. He started a golf/swim camp this week and is having a blast.


Tyler's Progressional Diary