Wednesday, February 11, 2009

Potential Pity Party....Beware

Thanks for checking to see how we’re doing. Not good, not bad sums us up lately. Karlie hasn’t been to school in three weeks. Two weeks were missed because we were snowed and iced in and we've both been sick. She still has quite a bit of mucous, choking on it in the mornings? The worst of the last few months has been the screaming though :( This makes me feel like i’m losing my mind. I can't imagine what Karlie must feel like?! I also can't help thinking back on the last time i seen her cry like this. Regression of skills is something that happens with Rett and the last time it took it's toll, Karlie was a pretty angry little girl. The thought of her losing more skills breaks my heart. I pray that's not what's happening! The picture to the left shows her exhaustion. She cried until she flopped down in her chair and just fell asleep, her face still wet from wringing her hands. Sometimes she can be in a fantastic mood, full of delirious giggles but when the screaming and hand biting starts it can last for hours. It also leaves me guessing as to if she's in pain. With no real form of communication, we're all left feeling helpless. (I promise to update on the My Tobii trial. Not as successful as i had hoped due to many circumstances.)

She has been doing pretty well with sleeping, though her days and nights have always been a little mixed up. We still give her melatonin but even that doesn't always work. Last night we were driving around at 3 am just so she would stop crying and go to sleep? Maybe that's not so unusual? I just know that i'm tired, i’m sick of having strep throat and today i’ve been a big crybaby. Sort of one of those days where once you start crying, you think of every crappy thing that’s happened in the last few months that have been out of your control. Kind of been crazy since Jon was laid off, the engine in his truck blew up, we were snowed and iced in for two solid weeks (major cabin fever), we have a $320 electric bill past due with another high one coming soon, my Grandma is in the hospital in heart failure, not to mention everyone in my house has been sick at different times....blah blah blah. Could be better, thank God it’s not worse.

Ok, ok...enough of my whining! I have soo much to be thankful for and need to focus more on the positive things. Please drop us a quick note and let us know that you're reading. My goal is to blog much more often!


L. x said...

reading and sending as many hugs as i can fit in this post. keep strong hun. Lori. xxxxxxx

Brooklyn said...

Bless her heart - she looks wiped out in this picture. You will ALL be in my prayers sounds like you have had a rough month girl! I hope things get better for you and soon! Give that sweet angel a kiss for me!

Please join us on Karlie's Rett Syndrome Journey ~ Until we find a CURE!

~During Vital Stim Therapy~

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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 and 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~