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 ear...you 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.

Wednesday, November 26, 2008

Happy Thanksgiving

My family is the beginning of a very long list of things i'm thankful for, not only during the holiday season but everyday. This particular year (our first with the Rett Syndrome diagnosis) i feel as if i've counted each blessing twice. Naturally, there have been a lot of hard moments but we are lucky to be blessed and thankful. From our family to yours...Happy Thanksgiving!

Friday, November 21, 2008

A sad day for us...Karlie's last session of Speech therapy with Mrs. Kate

Karlie and Mrs. Kate reading Brown Bear, Brown Bear

video

Today we had to say goodbye to a friend. Karlie's awesome Speech Therapist is relocating and we just finished our last session with Mrs. Kate. The children she will work with in Colorado will certainly be blessed, but i can't help feeling sad for our loss. Mrs. Kate worked wonderfully with Karlie for the last year and a half. She quickly gained her trust and communicated with her better than any other therapist at this point. She has shared brilliant ideas and was successfully teaching my little one how to communicate with eye gaze. Mrs. Kate was also instrumental in making sure Karlie has the opportunity to use a high tech eye gaze system, the My Tobii. Her bubbly attitude and caring hugs will surely be missed and the poor girl who follows will have some mighty big shoes to fill in Karlie's eyes!

Thursday, November 13, 2008

The beginning of our Rett Syndrome journey...hard to believe a year has passed.

On the eighth of November, 2007 i was driving on the interstate toward home, with my two daughters in the backseat. My oldest, Emmaleigh and i were singing along with the radio, while Karlie laughed at us. My phone rang, and the doctor on the other end gave me news that forever changed many lives. My youngest daughter, Karlie Grace had tested positive for Rett Syndrome at the age of 35 months.

That instant, i realized that i would be caring for my daughter for the rest of her fragile life. I had read about Rett Syndrome (RTT) in a ten year old library book and on the internet, while searching for answers that no one else could give me. My mother's intuition knew that something was wrong with Karlie but i wasn't prepared for the news. I had spent five long weeks praying her blood test wood be negative not preparing myself otherwise. I was crushed...my heart torn into. A flurry of emotions came over me, after just a few seconds of conversation with the doctor. I was afraid, i had so many questions but no words were coming out. I felt like someone had knocked the wind out of me while tears flooded my vision. I had never felt so helpless or broken hearted. Every dream that i had for my youngest child was gone in an instant, leaving a gut wrenching emptiness. Utter dispare.

All else that i could think of was that i needed to get off the road, and breathe but i couldn't. I couldn't sit on the side of the road and let my children see me go to pieces, i knew i needed help. I drove for fifteen minutes before i reached my exit, while having my first panic attack. Emmaleigh was afraid but silent and Karlie thought my emotions were hilarious. How could this happen? Why did it have to be my baby? Why our family? What did i do wrong? How am i going to handle this? I made it to my dad's office, since my husband and mom were at work. My dad seen me before i ever made it inside and knew something was horribley wrong. I had instructed Emmaleigh to stay in the Jeep, it would be okay. She was scared and didn't move a muscle. Did she know that her life had just drastically changed when the words Rett Syndrome entered our lives?

I spent the next half hour crying for everything that was lost. My grandparents came and took the girls to their house, while i grieved. I knew i had to tell my husband, since he would be home from work soon, so i mustered every ounce of strength to pull myself together. The drive home took minutes, and with perfect timing Jon pulled in the driveway. Thankfully, i didn't have to say a word. He instinctivly knew so we just sat in the kitchen floor and consoled each other as our world came crashing down. From there, we formed the only plan that we knew possible. To love her and do everything in our power to see her through life and make her happy.

That evening, new dreams were created for Karlie and along the way, through the tears came hope. I refused to let myself fall apart any further and anger was building up. I don't ever remember being pissed so much at God, but just pissed off that this had happened to my daughter. Then i thought of all the other girls that i knew must be out there living with Rett Syndrome. Rett is rare, but i was determined to find someone who understood. I also wanted to face this head on and be informed. I buried myself in the computer and the Rett Syndrome Handbook which arrived a week later. Our future was unknown, but isn't everybody's?

Immediately we arranged for more therapy. She was already seeing an Occupational therapist and her Speech therapist had just resigned. We found a wonderful new Speech therapist five minutes from home along with a fantastic Chiropracter. We also sought a new Physical therapist since her other was on maternity leave. Her Developmental Pediatrician suggested that we meet with a Genetics Counseler, a Neurologist, a Cardiologist, a Pulmonologist....so many ologists and this was just the beginning. Months passed, each day was another therapy and another appointment. Various tests, showed good and bad results. We learned through a swallow study that Karlie was aspirating liquids into her lungs when she drank and our second round of pneumonia followed due to this. We started thickening her liquids to pudding consistency and mention was made of a feeding tube. Recently, she completed almost five months of Vital Stim therapy and is now successfully drinking regular liquids again with a tightly pinched straw. This was a major victory against Rett Syndrome that we won! The outcome may be temporary but Karlie happily celebrated with a snow cone and we are incredibly proud of her new swallowing ability!

I was thrown into the special needs school world, fighting through IEP's for what i thought was best but against "professionals" who knew nothing of Rett. I read the education laws until i was blue in the face and still don't know that i fully understand, but i bluffed well enough that they gave into my demands. After months of bickering, i feel like we were victorious again. Karlie attends an inclusive preschool class with me by her side. Some days she holds out for an hour, other days, we eat lunch and leave. I want her to be challenged, but i want her to be happy so she can learn and not be afraid of the environment and the comotion going on around her. Her teacher is still gaining her trust but Karlie loves her rendition of "Five Little Monkeys".

Karlie has made progress in many areas, yet we've seen a few regressions as well. Naturally, some days are better than others but we enjoy them as they come. I love the moments she's really verbal and babbles like crazy just as much as when she laughs her little head off. Her laugh is so bubbly and completely contagious. She loves it when you get her belly and the anticipation totally cracks her up. Karlie is such a joy and blessing to our family!

Looking back over the last year, the rest of us have came a long way as well. I deal with heartache daily but don't dwell upon it. Karlie has numerous therapies and appointments so we stay busy, which helps tremendously. Jon works to support our family but thankfully he landed a job a few minutes away from home that paid better than his previous job. He too carries a lot of stress, but does so with a smile upon his face. Emmaleigh is a straight A student, most of them being A+'s so she has adjusted well too. She's in the second grade and we just found out that she comprehensively reads at a fifth grade level. I'm so thankful school comes so easy and education excites her. She misses out on a lot of fun things that are difficult to now do as a family but i pray that she always understands. She knows her sister is different, but to us, she's the same precious girl we brought home from the hospital on New Years Eve almost four years ago.

I've cried thousands of tears and lost many nights sleep hoping for a cure. I don't feel like we can depend upon the government to help our children since there never seems to be enough money left for research funding. There are a few different non-profit agencies that are dedicated to raising Rett Research money but two are dear to my heart. I truly think a cure will be produced from their abilities to raise money and awareness. I beg you to visit www.girlpower2cure.org and www.rsrt.org. If it is possible, i urge you to make a tax deductible donation in Karlie's name toward our dream. Someday, i hope to celebrate the anniversary of Karlie's cure, rather than the anniversary of her diagnosis day. Hugs and angel kisses to all! Karlie's mom, Kim
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~