Monday, December 8, 2008

Hoooray!!! The My Tobii is here!!!

As you can see, we're pretty excited to have received the My Tobii today! For those of you who don't know, this is possibly Karlie's window to communication. Due to Rett Syndrome, she is unable to talk or use her hands, making nearly all tasks impossible. The My Tobii is an advanced eye gaze computer system that speaks when Karlie simply looks at her choice. Karlie first tried this amazing piece of equipment
in Chicago at the Rett Syndrome conference and then again in July. Immediately after, Kate (Bean's Speech Therapist) started the long process of paperwork so we could rent the My Tobii for two months. This is truly a remarkable moment for her to have access to such technology and i'm so happy it's finally here. She's still so young, but i think she'll catch on quickly. This could be a major life changing opportunity for all of us! Now, it will be up to me to supply all of her demands, lol. I can't wait to hear, "i want a drink, i want to eat, i want a drink, i want Elmo, i want to play"....the list goes on and on.
Here's a few more sweet shots of Miss Karlie. The lighting is terrible but who doesn't love the glow of Christmas lights?
I love her beautiful smile and eyes! This is Bean at her best! She's been in the best mood all day. I think she was happy that we stayed home waiting for the UPS man. She hung out in her room and watched movies but i guess i would prefer that over school too, lol.

3 comments:

Brooklyn said...

YAY! I can't wait to hear how she does with it!!!! And yes....BEAUTIFUL pictures of a BEATUIFUL little girl!!
Hugs from our part of Indiana.....

Avery said...

waiting patiently for video of ms. Karlie using her mytobii!

Our silent angel Victoria Rose said...

Kim you have done a fantastic job putting this together I love it. You are a very strong wonderful mother I admire the work you put in to all you do for your family you are a blessing to many. Karlie is blessed to have you as her mother...Jesus knew..Love in Christ Vickie

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~