10 years ago
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.
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- 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!
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8 comments:
Wow, that has to be uncomfortable! I hope she gets adjusted to staying and sleeping in her new bed. Cute picture of the girls!
Awwww....what a sweetie. I hope she gets the hang of it! Too cute though! Love the last picture of the girls too - I hope this nice weather is here to stay!!
You know, I think Caitlyn did the same thing when we moved her into a toddler bed. We decided it was because she needed something bigger. Up until last summer, she slept on a twin matress on the floor. It worked great! Hope she gets more comfortable.
That is a cute picture though! Hopefully she will figure it out soon!
Ok. Last time I checked was a while ago. I'm bad. looks like you need more bedrail. DOn't you just wanna go in and ask her where she thinks she's going?
What a beautiful daughter you have. I'm sorry for the struggles you are going through but admire your bravery and grace.
I will be checking back in!
Hi, Just wondering how Karlie is? Many hugs. Lori. xx
OMG, I'm so glad I found you again! She's so beautiful and getting so big! I'm adding a link to Simmi's site about her.
I miss you woman!
Love Angela
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