Saturday, March 21, 2009

I love her sweet smile!


video


Valentine's Day 2009

Emmaleigh was filming and didn't want her voice recorded so this is just a shot of my sweet girl enjoying the ride with a little music.

I wonder what she thinks about....

I sooo wish she could tell me!

Wednesday, March 18, 2009

Is my big girl ready for her big girl bed?

Most nights Karlie sleeps very well in her new "big girl" bed but occasionally we find her in some pretty funny, yet worrisome positions. During the night, we put a gait across her doorway but any unsupervised time can be dangerous even in her bedroom. This is how i found her the first morning after she had slept in her new bed.
I think she rolls over in her sleep and her legs fall out of bed. Once she gets down on her knees, i don't think she's able to get back up into bed and lay down. This is a skill that's extremely hard for Karlie to manage while she's wide awake little lone half asleep.
Lately the weather here has been beautiful and we're very excited that tomorrow is the first day of Spring! We've been taking evening walks and Karlie loves being outside! Here's a pic from our walk yesterday. Happy Saint Patrick's Day!
Please join us on Karlie's Rett Syndrome Journey ~ Until we find a CURE!

~During Vital Stim Therapy~

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My photo
I am four years old. Last year i was diagnosed with Rett Syndrome. Rett is the most physically disabling neurological disorder on the Autism Spectrum. I can't speak or use my hands anymore but i'm a very happy girl and my blue eyes speak volumes! Typically, Rett only affects females and strikes between 6-18 months. Less than 4,500 girls have been diagnosed in the US but many have been missed. Currently there is NO CURE but researchers are working hard and Rett was recently reversed in mice!!! Please join us in supporting funding for a cure. Please visit www.girlpower2cure.org and www.rsrt.org to donate. I was born healthy and developed as i should have. I could roll over, sit up, crawl, play with toys and i could even talk a little but then things started changing. My hands stopped working and i lost intrest in almost everything. Instead of laughing, i cried. My walking improved, but my words went away. I stopped playing with toys, i couldn't feed myself, i couldn't even scratch my own nose anymore. My world was changing around me. I knew it, but was helpless against it. This is my Rett Syndrome journey. Please donate $$$ to unlock my world and so many others!

~Sand between my toes~

~Emmaleigh & Karlie~