|
Kody with his twin sister Kassi and his cousin smiling as usual!!!!!
One of Kody's friends on MySpace made this for him. www.myspace.com/miraclekody
WELCOME TO MY WEB PAGE AND THANKS FOR LOOKING. STOP BACK OFTEN AS I WILL UPDATE AS OFTEN AS I CAN. ...Look for udates at the bottom of the page....
Please take the time to sign my questbook so I know you were here. We want to Thank everyone for all the support and the love that they have given us!
My name is Kody and I was born on Dec. 14, 2001. I have a twin sister named Kassandra. I was born with something called Hemimegalencephaly also called HME which is a very rare seizure disorder. It occurred in the first 3 months of life in my Moms womb. It is a brain migrational disorder.
I was full term but started having seizures within 1 hour of being born. I was in and out of the hospital for the first 11 weeks of my life and then the decision was made to have a drastic surgery called a functional hemispherectomy. My seizures were uncontrollable (hundreds of them a day). I had the surgery at 11 weeks old, on March 12, 2002. The surgery is where they remove some portions of my brain and then they completely disconnect the rest of it, so the seizures can not cross over to the good side (my HME was on the right side). It was a very difficult time for our whole family and we did alot of praying!
I came through the surgery even though my family was very worried and I came home 1 week later.
I then got meningitis and had to go back in the hospital for a couple days. We were told that I could get hydrocephaly from the surgery and unfortunately I started having symptoms (vomiting, crankiness and rapid head growth) and had to have an emergency VP shunt put in on June 29th, 2002 at the age of 6 months.
I was on 3 seizure medications and have been weaned off of all 3 of them! The most important thing is that I am SEIZURE FREE!!!!
I have had numerous smaller surgeries besides the brain surgeries and I do face at least two more surgeries one to have a perforation closed in my eardrum but not until next year, and the other to perhaps break my jaw and fix it if it doesn't correct on its own. There is always the worry of shunt malfunction which could be very life threatening and would mean more surgery for me.
I do have left side hemiparisis (some lack of use of or weakness on left side) from the surgery and also a left field cut (I can not see anything on my left out of either eye unless I turn my head) and some other vision issues. I have compensated very well and I work very hard. I go to Pioneer (a special needs school) and I love going to school. I get my therapy there now and I am learning new things every day. I scoot all over the place. I am so happy I can get around now! I can't wait for the day that I can walk and run.
I am enjoying getting into things and my Mom and Dad love the fact that I can finally get into some trouble. They say I have developemental delays but I plan on catching up someday.
I love my family very much and my favorite thing to do is watch my twin sister run and jump and make me laugh. I love to smile and I do it most of the time. I love theraputic horse back riding (my horses name is Buster) and I go once a week from March until the end of Oct. It is my absoulutely favorite thing to do!!!! I get alot of ear infections and I have around 10 specialists so I am always at the Dr. for one thing or another.
I Thank God for the Doctors that were able to do my surgery that helped me live my life to the fullest. I am a living miracle.
Alot of people think that I can walk and stand because my pictures are tricky but I want people to know that I can't walk yet and I can't stand unassisted. I am learning how to talk a little bit and I try to repeat what people say to me and answer appropriately but sometimes I find it hard so I also communicate by pointing. I certainly am not focusing on my negatives but I just felt it was important to share that. I am working hard on those skills still.
Thanks so much for checking up on me and my family and please sign my guestbook so I know you were here. I love my mommy reading me what everyone says and looking at the pretty pictures
I want to Thank Tumbleweeds Foundation for granting my wish for Indoor/Outdoor carpet for my deck. It gives me the freedom to play outside on my deck without getting splinters in my bum and hands. THANKS TUMBLEWEED!!!!
We went to Disney World in Nov.2006 and a had the best time ever....THANKS MAKE A WISH!!!!!
HERE IS KODY'S AND KASSI'S MAILING ADDRESS FOR ANYONE THAT WANTS TO SEND HAPPY MAIL TO THEM....
3567 mountain view drive # 304
west mifflin, pa 15122
Kody likes anything Lighning Mcqueen and all trucks or cars. He also likes hard books that are colorful and he likes spongebob.
Kassi likes make-up, Hannah Montana, High School Musical, Bratz and anything else girly.
HERE IS A LIST OF ALL MY SURGERIES
Right hemispherectomy - 3/12/2002
VP shunt - 6/29/2002
Tubes in the ears- 10/30/2002
Eye correction surgery-11/4/2003
Tonsillectomy and adenoidectomy- 4/10/2005
Botox- 9/23/2005
Double Hip Osteotomy-1/11/2006
Heel Cord lenghtening- 1/11/2006
Botox- 5/18/2006
Double eye muscle correction surgery-06/07/2006
Hardware removal from both hips 11/14/2007
Exploratory surgery in both eyes-4/21/08
Another round of botox (in arm,hand,wrist,thumb,elbow and shoulder,26 shots)-6/19/08
They put you here to brighten our days,
High in the sky, they are watching with praise.
Everyday I think how lucky we are to have you,
Mom and dad are so proud of all that you do.
It takes you awhile to learn new things,
Racing around the house, I see the joy it brings.
A special sister was given to you, to help you out,
Crazy and wild she is, but she loves you without a doubt.
Loving, sweet, and full of smiles you are,
Everyone who meets you thinks your a shining star.
Charming everyone you meet is what you do best,
However your attitude puts you above all the rest.
I am so glad God gave me the chance to give you a great life,
Loving you and Kassi is the greatest along with becoming a wife.
Doing your best and changing peoples lives is what you do,
That is why we all love you!!!!!
Written with Love by my Mommy just for me!!!!!
<
Kody,
I love you more than words can say,
You have changed my life in the most amazing way.
You never complain and always smile,
even if learning things takes you awhile.
You light up the room everywhere you go,
and of course, then you have to put on your little show.
Grandma is so sorry for all your pain,
but then I am so happy with all of your gains.
Kassandra makes you laugh with glee,
and chase her like a chimpanzee.
Oh Kody, there isn't a day that goes by,
that I am not so proud that I could cry!
Written by Grandma Randi with so much love!!
 
 | View | Add Favorite
HEAVENS VERY SPECIAL CHILD
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
by Edna Massionilla
December 1981
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms,
waiting for tests results to come back and wondering: is this the time when
my child doesn't pull through?
The are sitting patiently, in hospital rooms as their child recovers from yet
another surgery to lengthen hamstrings or straighten backs or repair a faulty
internal organ.
They are waiting in long lines in county clinics because no insurance company
will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3
hours a night, and must constantly be watched, lest he do himself, or another
member of the family, harm.
They are sitting at home with their child because family and friends are
either too intimidated or too unwilling to help with child care and the state
agencies that are designed to help are suffering cut backs of there own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try
to make up for the extra time and effort that is critical to keeping their
disabled child alive.
They are struggling to keep a marriage together, because adversity does not
always bring you closer.
They are working 2 and sometime 3 jobs in order to keep up with the extra
expenses.
And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have
some sort of normal life for their children and their families.
They are busy, trying to survive.
Sue Stuyvesant
10/15/96
*HUGS* TOTAL!
give KodyC more *HUGS*
Get hugs of your own
SOME OF KODY'S FRIENDS
Sara
Spencer
Lance
Jake
Sarah
KODY’S QUILT OF LOVE
HUGS AND HOPE
I WAS FEATURED ON
THE TUMBLEWEED FOUNDATION JANUARY 2005! Stop by and check out these folks! They are even from Pittsburgh LIKE ME
KodyC's banner made by the Big Brave Banner Site
Journal
Saturday, March 28, 2009 8:54 PM CDT It has been awhile since I have updated! Kody is doing wonderful! Last week he had a round of botox injections and he is really trying to use "lefty". Well as much as Kody will. We have never focused that much on making him use it, but always to use it as a helper. So we are trying to work on using it to help him dress and stabalize paper and books and he is doing wonderful. He is also doing FANTASTIC with his reading!!!! Words cannot describe how happy his therapist, teachers,neighbors, and myself all are of Kody in this area. He will read words such as "excavator" and "elephant". I just can't believe how much that boy amazes me everyday! I have just come to realize within the past few weeks that I really do focus on the negative sometimes. Such as the fact that Kody does not walk or talk like most of the hemispherectomy children, but he is my little shining star and I need to be so thankful for what he does do because they are all so different in so many ways! We just have to be thankful for what each of our children do because they are a gift from god and they are all miracles! Kody is the most pleasant child I have ever seen in my life and always has a smile on his face. I have never met anyone in Kodys life who has not fallen in love with him and that a piece of Kody will stay in their hearts forever! That is a gift that God gave Kody =)
Kim
Read Journal History
Links:
|
|
