It was 6 months ago today we received the official diagnosis of Rett Syndrome. A date that stands out in my mind like her birthday.
Before then:
1. Words like seizures, gait trainer, and miralax were not part of my vocabulary.
2. Things like wheel chairs, switches, and an adaptive van we not on "my wish list."
3. I did not know about AMAZING "rett" girls like Taylor, Caitlyn, Edda, Brooke, and Ella.
Thank you to EVERYONE that has been a part of our lives over the past few months. We would not be as strong through all of this without you!!!
Love,
Kelly, Charlie, & Brooklyn
Wednesday, November 21, 2007
The 21st
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2 comments:
These milestones are hard, but they do get easier. December 2nd marks 2 years since Caitlyn had her blood drawn for the test, which no one expected to come back positive. On December 1, we were still holding on to the words "Developmentally Delayed." Happy 6 months with Rett...More importantly, Happy 2 1/2 Years with Brooklyn!
Hi Kelly, you posted a comment on my dad's blog the other day and I wanted to return the favour.
She's so easy to love! They truly know how to live in the moment, I've really learned a lot from her. I'm sure you know you're not alone, there's so many websites and organisations to meet and share stories and tips. The latest dilemma for us has been finding gloves that will stay on. She hates not being able to feel, and she'll just shake off anything we put on her! Recently we've found really small tight gloves work with mittens that go up to her elbows works best. Anyways thank you for your post, and I wish you the best through your journey with your Angel, I've heard many heartwarming stories and am experiencing some now too!
-Brenna
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