Happy New Year

Has it been almost a month since I posted? I started out my last entry this way also. So much for New Year’s Resolution number 2. Number 1 is to exercise more and I am not doing well there either. This week was long since the boys had two weeks off before going back to school. Hopefully we have the routine down again to make it a little easier. “New Grandma and Grandpa” and Uncle Mike visited for a week at Christmas, this year was the first year in the last several that I actually could take some time off while they were here.

Quick update on Brandon and Jeremy. Brandon’s sight is diminishing, he has been bumping into things more, even around the house. He still is a very happy young man who loves his Pokemon, SpongeBob and occasionally Star Wars. Jeremy is also happy most of the time although he has his moments. His eyes are also deteriorating, although he still does not need a cane for day to day activities. He has had much more difficulty with losing his sight than Brandon had, he still doesn’t understand why he can’t play sports with his friends anymore. Jeremy asked me at bedtime the other day “When I die will I be lonely?” Another one of those moments that left me speechless and crying.

We have also received word about our court case versus Charlotte Mecklenburg Schools. We have reached the Federal District court after CMS has appealed both of the rulings so far(each was pretty much in our favor) We are set for a mediation date on February 3rd and if an agreement is not reached we will be going to trial in April.
I hope that 2009 brings you happiness, hope and a prosperous year!!!

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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