Sunday, July 31, 2011


Nanan left today and I'm so sad.  I had great snuggle time with her, especially at night when mom and dad were putting Aidan to bed and trying to get dinner cooked.

Aunt Destin manages to keep me dressed in the the most fashionable outfits even if Daddy and Uncle Widg can't seem to figure out how to put them on.

Thanks to Mom and Marmee's friend Gail my family is following leads from Canada to the Philippines about a little boy who had a similar diagnosis as me and is now doing well, seizure and medication free.  We are trying to reach out to their doctors in Canada to see what direction they might lead us in.  We are sticking to our motto, hoping for the best but preparing for the worst.  Just in the few days that my Phenobarbital dose has been reduced I have been more alert for longer periods.  I still tire very easily and become very overwhelmed/over stimulated when too many things are going on.  It's nice to get out of the house but it does take it's tole on me.  I took Nanan for a birthday brunch with Mom, Dad, Aidan, Uncle Widg, and Aunt Destin.  I pooped ALL over Mom - just to keep things interesting.  I became really over heated and had to be rushed to Uncle Widg's house to cool down.  Mom and Dad worry if I get stressed.   It will be easier when it is not so hot since I enjoy sitting out on the patio in the evening with my family.

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