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Kelly's Page 
Hi, My name is Kelly, but my friends call me Kellbell. This is me with my sister, Regan. She's my best friend.
I like to do a lot of things. This spring I started playing baseball. I like to wind up to bat six or seven times, or until everyone BEGS me to hit the ball! Then I run really fast. My dad is a coach! I love it!
I have lost three teeth this spring too. I love that fairy, who leaves me money. I go to the store and buy Hershey bars! They are my favorite treat!
This is me with my friend, Sam. My mom and his mom say we are getting married some day. That's ok with me. I love Sam.
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
Saturday, March 16, 2013 5:38 PM CDT Kelly just had another clear checkup! We are six years off treatment now!
She just traveled with me to Washington, DC to encourage our congressmen to co sign the ABLE Act that will allow people with disabilities the right to save money for their futures. Current law says that they can not have more than $2000 to their name at any one time!
Read Journal History
Links: http://www.kellysupsidedownball.org Kelly's Upside Down Ball
http://www.wiusd.org Wisconsin Upside Down
http://ndss.org/ National Down Syndrome Society
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