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.
Read Moreis coming up with a new daily …
is coming up with a new daily schedule to try and balance life and kids a little better. (And I get a little more “me” time out of the …
Read Moreis sitting on the front porch …
is sitting on the front porch enjoying a chilly spring breeze.
Read Morereally really wants to feel we…
really really wants to feel well. It’s 2am and my little bed buddy (London) is NOT snoring!!!!
Read Morehas a very nasty virus and rea…
has a very nasty virus and reallllllllly wants her husband to close the shop early.
Read MoreBeing up all night sucks. At …
Being up all night sucks. At least I can aim when I’m sick. LOL
Read Moreis trying to fall asleep while…
is trying to fall asleep while my 3yo is playing star wars on YouTube in bed next to me.
Read Moreis crossing her fingers in hop…
is crossing her fingers in hopes of Rachels lab results being in tomorrow before the cat scan.
Read More
Is taking London to have his t…
Is taking London to have his tonsils and adenoids out today.
Read MoreWe had the best day!
The weather was great and the kids played outside for hours. We ate at home like Kings and took a long walk to get ice cream and walked home on the beach. ‘Twas the best Sunday in months!
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.
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