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Kelly's Page 
My name is Kelly,
but my friends call me Kellbell
This is a photo from our trip to Colorado Trails Ranch!
It was so COOL!
That's Jodie, one of the wranglers with me! I miss her!
Check out coloradotrails.com
In case you haven't noticed, I have Down syndrome.
Down syndrome is the most common chromosomal variation,
accounting for 1 in 733 live births each year.
My parents found out that I would have Down syndrome
before I was even born!
When I was born, I had a problem in my tummy.
So I didn't get to come home till I had an operation.
I don't really remember that.
And my right foot was stuck in one place,
so I had another operation to fix it.
Don't remember that either!
I have some ear problems too.
So I've had lots of ear operations,
but they aren't too bad.
I have been in intensive care a lot.
There are lots of loud noises and buzzers and bells
and they don't let you sleep much.
I don't like all the tubes.
So, I used to like to pull those puppies right out!
When I was a little girl I could even pull them out with my feet!
But now that I am a big girl (I am 6)
I know better, cause it really steams the nurses!
Yep, I am a pretty smart cookie!
I even had open heart surgery.
It was pretty scary for my parents.
You should see how many folks come running
when you stop breathing and turn blue.
Mom and Dad didn't think that was too funny.
That's me with My dad and sister , Regan and brother, Reed
We are at the Hartland Relay for life!
I'm a survivor!
I have to eat a special diet called Gluten free
because I have Celiac disease.
It pretty much stinks.
No more McDonalds Happy meals-bummer!
I used to need help walking-but now
Mommy needs help catching me!
Did I mention that I'm a cancer survivor too?
When Mom thinks I am not listening, she says,
"Cancer sucks!"
I got sick on June 9th,2004.
The doctor said it was
Acute Lymphoblastic Leukemia or ALL.
ALL is lots easier to say.
I don't like cancer.
I had to get tons of ouchies
and lots of yucky tasting medicine.
Sometimes I just spit that yucky stuff out!
I used to go to St Vincent's Children's Center
for Cancer and Blood Diseases.
I loved all my friends, Dr. Smith and Dr. Hock, Anita,
Paula(who always tried to steal my chicken nuggets),
Cindy, Deb and Linda!
Now I go to Children's Hospital of Wisconsin.
Deb, Kristin, Janette and all the rest of the gang
take good care of me.
That's me on a pony at Give Kids the World,
when I went on a Make-A-Wish trip there!
GKTW and Make-A- Wish rock!
I still ride horses!
I get a special kind of therapy called hippotherapy.
I thought I had to ride a hippo,
but it turned out to be just a horse!
I love it! I go to a cool place called Avalon Tec!
Here I am in action
with my therapist, Nancy and her helper!
Now that I am better,
I plan to be cancer free forever.
I even got to get a puppy!
Isn't he cute?
His name is Chester!
The most important thing to know about me
is that I love everyone!
And here are a few new things to know about me:
I sing all the time-even when I am not supposed to.
I love to go to church! I hug "father" and he blesses me
and I sing "Alleluia" really loud!
Everyone looks at me and smiles too!
I love to give "huggies" especially to Mom and Dad,
Reed and Regan,
the cat and dog,
all my friends, teachers, doctors,
nurses, total strangers=oops!
Mom says I have to cut out the total strangers.
I am a great dancer.
I especially like to twirl around and
for some reason I never get dizzy!
I LOVE to talk on the phone.
But, my mom has to translate,
cause I get excited and talk too fast!
My favorite foods are turkey, ham and green beans,
apples, and grapes and lots of chocolate!
I still have my dolly and she is still my favorite!
I like to follow my sister everywhere.
It kind of drives her nuts.
I think all grandparents are great, especially mine!
Mom and Dad also say that I am a little stinker.
I swear that I am innocent!
I just love to make people laugh.
My new favorite things to say are, "what-ever!"
"Ok,Ok, Ok!" and "What the heck?"
I learned all that from my brother and sister.
Mom isn't too jazzed about that!
Thanks checking up on me.
Don't forget to sign my guestbook!
Mom and I check it out together every day!
Kelly's Song by Robbin Lyons
There you are.
What will you become?
And here I am
Feeling overcome
And they say
You’ll struggle thru your days
Oh, what will you become,
My precious little one?
And there you are,
So different from the rest.
And here am I,
Feeling I’ve been blessed.
Each day is new.
Each day a test.
But, we get through,
No different from the rest.
And there you are.
Looking almost grown.
And here am I,
Welcoming you home.
I never knew,
You’d make it on your own.
You really found your way
You were never once afraid.
And there you are,
So different from the rest.
And here am I,
Feeling I’ve been blessed.
Each day is new.
Each day a test.
But, we get through,
No different from the rest.
And there you are
No different from the rest.
And here am I
How was I so blessed?
You’ve made my life
No ordinary path
So different from the rest.
I know that I was blessed.
You’ve made my life
No ordinary path
So different from the rest.
Thank God,
I truly have been ….BLESSED
Journal
Sunday, January 4, 2009 9:44 PM CST Happy New Year!
I have been feeling a bit in the dumps the past week. Must be the post holiday blues. I hate to think that I am such a statistic! I had bronchitis just before the holidays and it made me really get overwhelmed with things this year! I haven't even sent my cards-though I am determined to do that-even if they end up as Christmas in July cards!
Kelly had big news! She just lost her first tooth! She is proudly displaying her big gap to anyone who will take the time to look! She can't wait to go to school tomorrow to show her teacher, Mrs. Plank!
I am looking forward to taking Regan to Dancing With The Stars on Friday. That was my Christmas gift to her. We have done it for three years now. But, this year we are at table number 1 right on the dance floor. We are going to see it in Rosemont, Ill because it isn't scheduled in Milwaukee this time around. We will spend the night and go shopping the next day before heading home. She is Soooo excited!
This year should be filled with excitement! I am hoping things will really start to happen with our foundation. We are going to the Grand Canyon on Spring break. I can't wait for the kids to see it. I am a bit apprehensive about keeping Kelly safe there though. I am also looking forward to going to The Affiliates in Action conference in Washington, DC in February. I am hoping to get the chance to meet with my Congressman to discuss Down syndrome awareness and possible legislation to help people with disabilities.
I am also very excited to celebrate the 5th Kelly's Upside Down Ball in Indianapolis in March. It is definately going to be a whirlwind spring this year!
Please pray for all the children with cancer, ewspercially those with Down syndrome. Especially Kalista, who was diagnosed the day after Thanksgiving. God Bless, and have a wonderful 2009. 2008 wasn't so great, but 2009 looks to be just fine!
Peace!
Robbin
Read Journal History
Links: http://www.kellysupsidedownball.org Kelly's Upside Down Ball
http://www.wiupsidedown.org Wisconsin Upside down Foundation
http://www.indianadsf.org/what_new.cfm Indiana Down syndrome Foundation
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