Monday, December 29, 2008

Happy 4th Birthday Karlie Grace!

Dad was in charge of the camera so we didn't get a lot of party pics, but some sweet ones none the less.
Karlie's pink cupcakes

I'm gonna cry if you don't give me cake!
Did you notice what my shirt says?

Ahhhh...finally. Cake is one of my favorite things!

See, cupcakes make me happy!

Pappaw, i'll bite your nose off if you don't get me more!

Four years ago i was preparing to give birth to my baby girl. She was scheduled to be delivered by c-section so we weren't anticipating any surprises. However, we woke up just a few days before she was to arrive to find more than two feet of snow on the ground and our area had been declared a state of emergency. Wind chill was estimated at -30 and in less than 24 hours a blizzard had left us with snow drifts that covered our windows. My mother had previously joked with me that since i had been born in the blizzard of 78, perhaps Karlie would make a grand arrival too of some sort. Does my mom have premonitions or what? lol
What should have been a half hour trip to the hospital turned into a two hour drive with the crazy road conditions but not even a natural disaster was going to stop Karlie Grace from completing our family! At 3:31 pm, four years ago today we were introduced to our beautiful baby girl. She weighed 6 pds 4 1/2 ozs and was 19 inches of pure joy! We had decided before her birth on her first name but Grace came to us when we seen her stunning little face. Granted, i copied off of Jerry McGuire, but i whispered in her complete me and i seen a little smile come across her face.
The next few days were such a time of joy for our family. We welcomed our little one home on New Years Eve and had the best celebration ever. Though we didn't have a clue what was in store for our future, my resolution was to be the best mom i could be and to not take the little things for granted.
Here i sit, four years later thinking back on those resolutions. I know God had a plan for me to be a mother, but i never dreamed it would be to a special angel. Was this his way of teaching me the full meaning of not taking the little things for granted? Since we received Karlie's Rett Syndrome diagnosis it seems like we always celebrate even the smallest of accomplishments. After all, the little things really are the big things in life and make the sweetest memories.
Today is no different for me and my family. It's the day our angel came into this world. Nothing can compare to seeing a big grin spread across her face while her eyes light up the room and a giggle escapes as she gives me a big open mouthed kiss on the cheek! In her happy picture above, her shirt says "Most Likely to Change the World". It has been said that Rett Syndrome could possibly be the first neurological disorder to ever be cured. Could this really be our future? I pray that it is, for my sweet Karlie and thousands of other girls and boys across the nation. Since Karlie is not able to communicate a birthday wish, i'm gonna wish for her. It's a safe bet she would wish for nothing more than a cure and to be continued to be surrounded with love.
I have several other updates but i have a birthday girl waiting patiently for me at the moment. I think it's time for another round of celebration! Hugs and sloppy birthday kisses from Karlie!

Wednesday, December 24, 2008

Ho Ho Ho, Merry Christmas!

Just a few pictures of the girls and the jolly, fat man in a red suit! This year we're walking a fine line with Emmaleigh and her belief system so i wanted to post our annual Santa picture. This could be the last pic i'll get of her actually wanting to sit next to him. Who knows, maybe she'll humor me in the future and still have one taken with her sister. Karlie, on the other hand didn't want to be there so much. She didn't cry while she was sitting on his lap, but she definately wanted to get out of his castle! I'm sure i had bruises on my collarbone the next day from her forehead bashing, lol but it was all worth it to capture this little memory!
Merry Christmas from The Reynolds!

Monday, December 15, 2008

Karlie's first school picture

Karlie's preschool pictures finally arrived! The ladies in the office at school were gushing over how cute they turned out! We're pretty proud of our photogenic little angel!

Thursday, December 11, 2008

~Riley and Karlie~Rett Friends Forever~

This pic was taken in Chicago at the Rett Syndrome Conference in May 2008. Someone once told me it reminded them of the theme song for Barbie's Princess and The Pauper movie..."You're just like me...i'm just like you". Aren't they just the sweetest little girls you've ever seen?

Wednesday, December 10, 2008

Bummer...the Tobii mount has bad springs

Jon and i struggled a little putting the My Tobii
together last night because the screws were scattered all over the suitcase it comes in and the instructions were in Japanese, lol. Somehow we managed but something just wasn't right. No matter what we did, the screen would tilt down toward the table. I contacted tech support this morning and the springs are bad in the mount! So...we're trying to improvise by flipping the mount and resting it on the tabletop instead. It's close to working, but we can't get Karlie at the right angle to calibrate her eyes since we can't move the screen. At this point she's unable to use it, but we're still excited none the less. I'll have a extra two weeks to learn the programming and she'll have a little time to get used to it as well. I have to say, it's an unbelievable piece of equipment!

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.

Wednesday, December 3, 2008

What's up with the hiccups???

Karlie Bean had hiccups nine times yesterday so that made me wonder what causes hiccups??? I remember learning long ago that it had something to do with the diaphragm but couldn't recall details so i found my answer with a quick search. The diaphragm is a dome-shaped muscle at the bottom of your chest, and all hiccups start here.
The diaphragm almost always works perfectly. When you inhale, it pulls down to help pull air into the lungs. When you exhale, it pushes up to help push air out of the lungs. But sometimes the diaphragm becomes irritated. When this happens, it pulls down in a jerky way, which makes you suck air into your throat suddenly. When the air rushing in hits your voice box, you're left with a big hiccup.
Some things that irritate the diaphragm are eating too quickly or too much, an irritation in the stomach or the throat, or feeling nervous or excited. While i may never know exactly what caused Karlie's hiccups i'm thankful to report they were easy to get rid of each time with a few sips of milk. Hopefully they won't be returning today because the hiccups are only funny so long.
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 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~