Cody's birthday is Jan. 4th 1992. Cody loves to swim,
has Pom doggies
loves to collect sport cars, and knows everything about almost every car out
there. From day 1 Cody threw up his bottles. We tried every formula out there.
He could not breast feed he couldn't suck well enough. He was good to sleep
one hour at a time.. He screamed and cried a lot. I would sit at nights in the
rocking chair and bawl.. He cried and cried ! For me to get sleep, I had to
hold him on my chest and hope to sleep a few minutes at a time. I bought blind
nipples so he could drink his bottles very very slow. He choked all the time
and his weight was low for many months, and his head size was considered smaller
than normal. He smiled and wanted to be a happy baby, but sadly to say the crying
baby was there more often than the smiling one. He tossed his head back and forth
for hrs at a time trying to get comfy.. He had a cough quite a bit also and ran fevers
over 106 with croup and ear infections. He never slept in his beautiful crib- my chest
was his bed.
He walked early, and talked early, but still was a very sad baby.. At 18
months, he took his first small fall and he was OUT COLD ! His breathing
stopped and he was blue quite fast.. I started CPR and called 911.. At the
hospital, he couldn't walk for them he kept falling, so the doctor said he has a
concussion and sent us home. Well, that was the beginning... more falls,
choking on foods, throwing up easy, coughing, and crying.... Went to doctor
after doctor... I was a bad Mom, I had him spoiled, I didn't know how to feed
him right, I was over protective.. On and ON ! To keep food down him I
made bottles of rice drink. That worked ! He never napped, and woke
up at nights between 10 to 50 times a night.. Cody cried a lot and wiggled all
over the bed.. Needless to say I was pooped ! WE moved to Las Vegas
when Cody was two. We went to more new doctors, same answers... Finally
went to a neurologist and was told he had ADHD and wanted him on meds.
NO WAY ! I was angry. The falls continued and CRP was becoming a habit..
At age 4 he fell and was out a long time and then went into his first seizure. Had
no idea what the heck this was ?? Doctor said not much we can do, he will
out grow it hopefully.. Went to a Neurosurgeon, he said same thing.. No neck
or spine orders were requested.
Once a year, we got a brain mri and I noticed it said
beginning of a syrinx.
I had a doctor friend order a Mri again in 6 months and the syrinx had grown
to 7mm. Again my Dr was angry I had another doctor do this for me because
he wouldn't. In Las Vegas there are TWO children's Neurologist and they are
in the same office.
Cody, at age 4 started telling me now his neck hurt, his legs hurt, his ears
hurt, his head hurt, his hands hurt, he said food made him want to throw up,
and he was having nightmares.. Night time was hell for him... He said it hurt
to run, hurt to watch TV, hurt to look down and hurt to use his hands.. Car
seats had always been hell for him. Anytime we went anywhere he screamed the
entire trip wanting out of his car seat.. Then he could finally tell me it hurt his
neck. So I started the search and found Chip's story and contacted the rare
disorders foundation. Started reading and it all fit !
Surgery was done March 29th 2001.. Cody went to Sunrise Childrens Hospital
at 7 am. He has calm and very happy.. We were taken into pre op and he got his
cute jamies, they talked to him about the surgery, and let him pick out a sent to put
into the gas mask.. He picked lime ? He got to drive a battery jeep to surgery room,
so off he drove smiles and all.. The nurse was awesome, they called my cell
phone every hr to tell me how he was doing, so that was great comfort. They called
after 5 hrs of surgery and said be to in preop waiting room in 20 min so we could be
there when he came out of surgery.
The Neurosurgeon came out and talked to us before we saw
him.. He told us what to expect.. Then he took us to see Cody in the recovery
room and Cody looked like heck ! He was crying and throwing up.. It was heart
breaking. He was so ill we had to spend 5 hrs there. Finally off to ICU, where we
spent the next 5 days. He did have a very hard time there. He was in tons of pain,
and sick most the time, and could not eat. He was finally taken to a room, and
was doing much better now and was ready to go home. He was still having pain
but did not want pain killers, just motrin..then on day 6 we were on our way home.
He walked out of the hospital, no wheelchair.. But he was sad, he wanted a ride. Oh
well, at least we were home now. But sad to say, no improvement yet, pain worse and
more symptoms ! I Pray for Cody to be on Chips success stories list one day, but
right now, we are far from it, but being positive !
New Mri's were just done and nothing improved as of yet.
Memory problems has hurt his schooling, and concerned he is falling behind
his school grade. Last night he fell and now not quite sure if we might
have a crack in his wrist. LOL well he broke it and is now in a cast.. But I
will say he is very positive, smiles all the time and everyone that meets him
just loves him... He is a very special young man ! He doesn't ask for pain meds
unless he is almost screaming in pain. He is a strong kid ! Now we just have to
wait ! The last Neurosurgeon appt was put off until next month.
He is such a great kid. I am so Blessed. Cody has two 1/2 brothers one is
30 the other 28.. Rob is 30 and a fireman paramedic, Eric is also a fireman
engineer paramedic. Both live in other states. Cody is a uncle of 6- 3 girls and
3 boys.. which makes me grammie Ginger.
Cody has two aunts and my mom and his fathers dad and step mom. My sister
has 5 kids 3 are deaf. I suffer panic attacks, and Cody has mild ones. It seems
to run in my family. Cody is a silly, funny child.. Loves movies, and old tv shows..
Country music..Loves Nascar, Jeff Gordon is fav along with Tony Stewart.. He
has met many racers and has had his picture taken with them.. Indy car racing
offered to pay for Cody's surgery 4 years ago.. But no surgery was needed then,
so we have not been in contact with our friends there in quite awhile.. WE live
in Las Vegas, Cody was born in Riverside CA and we moved to Las Vegas
when he was 2.. His daddy's name is Brian and Cody is Brians only child.
Ginger mom of 9 year old with acm 20mm/Sm 9mm and tattered cord starting.
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