Friday!!
Today I am taking Rach into Boston for another appointment with the Optometrist and Opthamologist. I am very hopeful that I will find out what has caused the scarring (Vitamin D?) and what we can do to prevent further deterioration of her vision. This will be a pivotal appointment for me in deciding the next step of her overall treatment and if I should pursue Perkins. Her vision seems to have gotten worse in the last few months but it should have gotten better with her glasses she got late Dec.
On a side note, Clive’s Hot Chick and I took an hour last night and got pedicures. It was so relaxing and I really like her.
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.
Wow-what a heavy blog. I’m sure it would at least be a little easier if you could have some definite answers. I’m sure the vision problems didn’t cause the learning disabilities but he surely couldn’t argue that having the vision problems certainly isn’t helping her. I hope you can get some answers soon. I would definitely get some genetic testing as well. I don’t remember you talking about any major illnesses that were out of the ordinary stuff. I hope that they find something fixable and soon! Big love from Colorado!