Kody's Story
written by mom Kim
Our journey started when I found out I was
pregnant and I was extremely sick. I went for my ultrasound at 16 weeks
after losing 12 pounds and the tech said "We found the problem. 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 something wrong 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.
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 incurable even with
medication.
Kody 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).
Kody 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 cannot 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 a lot of praying!
Kody came through the surgery, even though the family was very worried 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 have been weaned off all 3 of them! The
most important thing is that right now, he is seizure free!!!
Kody has had many other surgeries including eyes, tubes in his ears,
tonsillectomy and adenoidectomy, botox on a few occasions, double hip
osteotomy, and heel cord lengthening, etc He also just had surgery to have
the hardware removed from his hips. He may have to have one hip redone and
his pelvic in the near future. Also have to have a perforation closed in his
right eardrum which they will take a skin graft from behind his ear.
There is always the worry of shunt malfunction which could be very life
threatening and would mean more surgery also. Doctors are also talking of
doing surgery on a submucous cleft palate that he has, but we will not know
for another 6 months. Kody also has left side hemiparisis (some lack of use
of, or weakness on the left side of his body) from the surgery and also a
left field cut (he cannot 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.
Kody 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.
Kody also had two avoidable accidents recently, due to people's negligence,
that we are very upset about. 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 doesn't talk much yet, so he can't 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!!!
Kody knows his alphabet, his colors, numbers and all shapes. 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 year old, and for the first 5 years he never
said a word so this is great news!
Well, this is Kody's story, so please continue to pray for him through this
very tough journey of his life! He has a tough summer of a lot of therapy
ahead of him!!!
Abilities:
See: Yes, limited vision but can see pretty well.
Hear: Yes.
Talk: Not yet. Tries his best but we can't really understand him yet.
Walk: Not yet, but trying.
Read: Learning.
Use hands: Yes, but uses his right hand only.
Siblings:
twin
sister Kassi, age 6
Child's Interests:
Kody loves to watch kids run around and play. He likes to read books, watch
TV, and play with cars and trucks. He loves to go swimming, go to the park,
go to dinner and the movies. He also likes to chase the dog around the house
all day!
Sibling's Interests:
Kassi loves baby dolls, make-up, Bratz, coloring stuff. She loves Hannah
Montana and High School Musical. She is a very girly girl and is very mature
for her age.
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