Friday 830am with Dr Ware, a Developmental Psychologist at Children’s.
Monday 1130am with the School Principal and Director of Student Services
Next Thursday afternoon an MRI under Anesthesia (ordered by Neurology to compare to her previous MRI from 16 months ago)
Lots of others TBD.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
thinking of you guys. We’re just 20 minutes away if you need local support and friends.
‘sorry’ doesn’t cut it, of course, but continuing to take it one step at a time is all you can do.