Monday, April 6, 2009

A relaxing weekend...and a thought.


We had a fun and relaxing weekend at the festival. Jake warmed everyone's hearts and yelled "HI!" to everyone that came within a few hundred yards. He ran around the place until well after dark and danced. "Wan go up front, wan go see music." He slept like a rock all night. Unfortunately Manny didn't. Steve was half sick and made plans to take the boys home around dinner time on Saturday night. I got to stay and hang out with some of the most special people in the world. I was surrounded by friends, and althought I missed my men, I enjoyed staying up until the wee hours dancing. It was a great release.




Thursday, after taking into consideration some of the things that Dr. Michaels talked about and pointed out about Manny and Jake, I started doing some online research. I'm not going to put a ton of time into this, only say that my boys and special needs members of Steve's family exhibit a vast majority of the symptoms of Phelan-McDermid Syndrome (also known as 22q13 Deletion Syndrome) Everything that I have managed to dig up has been dead-on, right down to the curved pinkies, loss of skills, deformed toenails, facial features, autism, Manny's sudden loss of skills and worsening muscle tone, and on and on. I don't have the energy to type my thoughts on this, however it would explain a lot. The genetic testing will either confirm or rule-out my fears.