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KODY

KODY




love ya














KODYS JOURNEY THROUGH LIFE!!

Our journey started when I found out I was pregnant and was extremely sick. I went for my ultrasound at 16 weeks after losing 12 pounds and the tech said immediately that they had found out why I was so sick... "You are having TWINS"!!! We were shocked. Well before we even had a chance to be excited she told us Twin B which was Kody had some kind of abnormality with his brain. I was monitored throughout the pregnancy (they had no idea what was wrong). At 38 weeks Kody and Kassi were finally born on Dec. 14, 2001. So after weeks of misdiagnosis' and testing we found Kody 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 womb. It is a brain migrational disorder and the seizures are intractable even with medication.



He was full term but started having seizures within 1 hour of being born. He was in and out of the hospital for the first 11 weeks of his life and then the decision was made to have a drastic surgery called a functional hemispherectomy. His seizures were uncontrollable (hundreds of them a day). He had the surgery at 11 weeks old, on March 12, 2002. The surgery is where they remove some portions of his brain and then they completely disconnect the rest of it, so the seizures can not cross over to the good side (his HME was on the right side). It was a very difficult time for our whole family and we did alot of praying! He came through the surgery with God's help and he came home 1 week later. He then got meningitis and had to go back in the hospital for a couple days. We were told that he could get hydrocephaly from the surgery and unfortunately he 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.He was on 3 seizure medications and has been weaned off of all 3 of them! The most important thing is that he is SEIZURE FREE!!!!



He has had many other surgeries including eyes, tubes in his ears, tonsillectomy and adenoidectomy, botox on a few occasions, 2 double hip osteotomies, and heel cord lengthening,etc He also had surgery to have the hardware removed from his hips. On October 27, 2010 He had a surgery that involved 13 procedures. He was in a full body cast, arm cast, and had pins in both ankles. He then required months in rehab and while there they broke his femur bone which delayed his recovery by approximately 2 years. Then in 2012 he had 5 teeth pulled and had A tympanoplasty with ossiculoplasty and they found a cholesteoma so it turned into an 8 hour surgery. He also just had pins removed from both ankles in May.There is always the worry of shunt malfunction which could be very life threatening and would mean more surgery also. We average 3 ER visits a year. He also has left side hemiparisis (some lack of use of or weakness on left side) from the surgery and also a left field cut (He can not see anything on his left out of either eye unless he turns his head) and some other vision issues. He has compensated very well and he works very hard. He goes to a wonderful school. He gets his therapy there now and is learning new things every day. He scoots all over the place. He is so happy he can get around now! He can't wait for the day that he can walk and run!He is working very hard on talking right now.



He also had two avoidable accidents recently when he was 5 due to peoples negligence . The first one was at school while he was in a pony walker which is a piece of equipment that he walks in. They let him go near steps while they were not watching him and he went down 5 concrete steps. He broke his collarbone and had a bad head injury. They failed to tell me the truth. The second one was on his way home from his new school just 6 weeks later his wheelchair tipped over completely on the bus because the bus driver didn't strap him in right and he hit his head on the window and then again on the floor. They didn't tell my me for three days because they tried to get away with it. But then a big bruise appeared on his head by his temple. So yet again another head injury. 2 HEAD INJURIES in 2 months!!! and he has a seizure disorder!!! I wish these people would be careful with my child, and to make matters worse he didnt talk at all so he cant tell me what happens! I have to do my best to investigate and figure it all out! But he is this little angel that keeps smiling!!!! He just has some bad luck!!!



He knows his alphabet, his colors and numbers, all shapes. He can read at an 8th grade level. He does very well cognitively. His non verbal IQ tested around 90 which is very well for him. He is now talking like a 2-3 year old and for the first 5 years he never said a word so this is great news. Well this is Kodys story and he is doing well and working very hard right now. So please continue to pray for him through this very tough journey of his life! I just want to say I would NOT change one thing about our life. I wish I could take away ALL of his pain...but he made us all who we are. Kassi is the MOST caring sister we could have ever asked for and our marriage is stronger than ever. Kody is such a blessing <3333…He was brought to this world for a reason and melts everyones heart whom he comes in contact with. He has also become the poster child for just about every single organization. He was put on this earth to change it and I was chosen to be his mom!
<3333






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 Lightning Mcqueen and all trucks or cars. He also likes to read simple books that are colorful and he likes spongebob.



HERE IS A LIST OF ALL KODYS 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

Appendectomy 4-27-10

Shunt revision 4-27-10

Bilateral Nasal endoscopy with Cautery 10-27-10

Left proximal and femoral varus derotational osteotomy 10-27-10

Pelvic osteotomy 10-27-10

Pectoralis lengthening 10-27-10

Elbow flexor lengthening 10-27-10

Wrist/finger flexor lengthening 10-27-10

Thumb abductor release 10-27-10

Bilateral Hip abductor release 10-27-10

Anterior obturator neurectomy 10-27-10

Percutaneous subtalor stabalization 10-27-10

5 teeth pulled 5-23-12

Tympanoplasty 5-23-12

Ossiculoplasty 5-23-12

Cholesteoma removed 5-23-12

2 screws removed from EACH ankle 9/17/13

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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!!!!!

<Image hosting by Photobucket



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!!










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 AND HOPE




KodyC's banner made by the Big Brave Banner Site





Journal

Thursday, October 31, 2013 12:32 AM CDT

WOW what a year so far! So Kody had the screws removed from his heels last month. We thought that is what was causing him so much pain. After 5 weeks, he is still not wearing shoes and it in a lot of pain and the skin is not healing correctly. I am taking him back to orthopedic doctor on Tuesday. I am feeling very overwhelmed with all of the decisions I have made over the past 5 years and although I know each one was made with lots of thought. I am feeling very regretful. Oh well, I guess that's the life of a special needs mom. On a better note....we just moved into a better house for Kody. A one level ranch with an inground pool! He loves it. He also has a bigger room. He has been doing fantastic in school and has been talking up a storm. As always everywhere we go, everyone loves him. I am sooooo proud of him lately and all he has accomplished. So I know its been awhile since Ive updated hopefully I will try and update every month!

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Hospital Information:

Patient Room: 400

Kody C.
I/C/O Childrens Institute
1405 Shady Ave.
Pittsburgh, Pa. 15217

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E-mail Author: kassieandkodytwins@yahoo.com

 
 

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