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While I was pregnant with Riley I found out he has hydrocephalus. At
that time the doctors wanted me to terminate my pregnancy. They said
he'd stillborn or just live a few minutes after birth. Than after he
was born breathing on his own they said he'd only live a few hours,
days, and wouldn't make it a week. Well weeks went by and Riley was
like any other baby!!! Than sadly his head started enlarg...ing. Took
him to the doctors here in East TN they told me that my sons life
wasn't worth saving, because he wouldn't live long and if he did he'd
be stupid and a veggie (their very words to the T). I found a doctor
in Nashville TN that was willing to save my sweet boy. In February
2007 Dr. Tulipan took one look at Riley and had him set up for surgery
the very next day!! Ry had a VP Shunt put in to drain all the fluid
off his head. We could see right away the shunt was working right by
how much Riley's head had went down. After letting his head fill with
so much fluid it caused nerve damage. Riley was no longer able to do
things that he was able to do before. Months went by and Riley was
well himself, than around 10 months old he started having seizures
real bad. Didn't take long to find a doctor and get Ry on meds. The
meds started working and he no longer had any more seizures!! From the
years of 2007-2008 Ry started getting pneumonia way to much. He had a
swallowing test done and it showed that everything he was eating and
drinking was going into his lungs. In June 2009 Ry had a fundo done
and a feeding tube put in that was a big blessing. 2009-2012 Riley's
health was up and down, in and out of the hospital. During those years
he also had a few other surgeries on his hips and legs. In September
2012 I thought my sweet boy was getting his angel wings. His body shut
down and he was comatosed. After spending weeks in PICU, I was told
his liver stopped working right. That caused one of his meds to build
up on his liver and also made his kidneys not work right. After tests
and different meds he started coming to, but had very high blood
pressure. Finally got in to come down and not to long after that Riley
got to come home. This year has been a great year for Riley he started
the 1st grade which he's home bond, but he gets to go to his home
school and visit. Another thing with Riley since his feeding tube
surgery is that it's been hard for him to put weight on and keep it
on. Riley is currently 36.2 pounds and going up!!! They said Riley
would never know anyone or anything oh boy they were super wrong. My
baby has many different personalities he lets me know when he needs or
wants something, and loves to smile. He showed the world that he was a
lot stronger than anyone expected him to. He's my little superman and
a Hero in my eyes.
Riley enjoys the outside so much and loves to swing but a handicap swing cost way to much for us so we are reaching out for help. Anything helps and we are going to do anything to get him a swing so he can enjoy outside more. Thank everyone for the love and support. Riley also has a facebook page its called Rileys Journey. Heres a link www.facebook.com/rileysjourney1120
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