Our first born Steven Lee Stiles was 48 hours old when we rushed him
back to the hospital. I told the doctors, "He has been a rag doll
since we left here yesterday. I had to wake him up to force feed him,
that's only been 3 oz and he spit up most of it!! And I have only
changed a few pee diapers. Something is wrong!" The response was
the same as the half a dozen times I called with worry in the past 24
hours, "He's fine, he's in a sleep phase all newborn babies go
through it." Vital tests were done on him and all came back saying
he was fine. They wanted to see if he had a bladder infection, and
wanted our permission to put a catheter in him. I told them, ¡§He's
peeing fine. He hasn't pooped since he was born!" One of them
rashly responded, "He had to of, we don't send them home until they
do." I said, "Get out his chart and look because I never saw any!"
Someone was told to go get it. But no one ever mentioned his chart
to me. They didn't have to they wheeled in an x-ray machine instead.
It showed a blockage in his large intestine. The impacted part was
on the verge of bursting. He very well could have died if I would
have believed in the "sleep phase" excuses. The next thing we knew
our son and I were rushed to Mary Bridge Children's Hospital 100
miles away. 4 very stressful days into his 2 week stay at the
Newborn Intensive Care Unit they told us he had Hirschsprung¡¦s
Disease, neither of us had heard of it. He was lacking nerves that
made his intestine work. If we wanted to take him home we would have
to learn to enema him and do it 4 times a day to keep him pooping and
alive. At two months old he under went surgery and was there for
another week. His intestine comes out by his bellybutton now and he
excretes into a colostomy bag. He turned 1 on January 19, 2007. We
found out in September after blood tests Steven¡¦s many allergies. He
has a really high allergy to cat dander. Which we were told by
neighbors, the woman before had a dozen cats in here. We even own a
cat named Rebel, but I have pretty much confined him awayƒ¼. He also
has many food allergies; peas, bananas, oranges, wheat, rye, soy,
pork, and beef¡K the worst includes; eggs, milk, and peanuts. This
special diet is one more expense we are finding hard to cover. We
have been surviving on one income for the past year, since I have
stayed home to take care of Steven. We sold our second car last year
to pay the rent after Steven was hospitalized. Up until Justin
changed jobs 7 months ago we were collecting food stamps. Steven¡¦s
condition is considered a hardship, so S.S.I. has been supplements
our income up to $600, usually $20-40 lately. Justin has worked some
overtime and they say they overpaid us $1300 and we pay them now¡K??
Which I don¡¦t understand, but that is another story. So Steven goes
to see his surgeon this Thursday, hopefully to schedule the
reattachment operation of his intestine to his bottom. His Surgeon
won¡¦t operate until his skin is clear, but with all these allergies
his eczema is out of control. I finally got Medicaid to fill this
Elidel prescription; yeah it only took 3 weeks, typical. My husband
Justin and I met 3 years ago when I was living in Oregon taking care
of my father who is blinded from glaucoma and Steven Johnson's. When
we found out we were expecting our first child we moved to S.W.
Washington, where Justin grew up. We had planned to move into and
fix up Justin's childhood home. His father died of pancreatic cancer
when Justin was 18 and his sister Keely was 4, he left 3 acres and
the house on it to them. No one has lived their in years, we
expected a lot of work. We went to the property and cried when we
saw it falling to pieces. The south wall was falling off away from
the foundation. A part of the roof had caved in. There was tons of
water damage and mold. Someone stole the pump to the well!! Doors
were missing and most the windows were broke! Even a nest of bees
had made a home in a wall. We knew fixing the place would be a task,
but we didn¡¦t anticipate that much damage. So we moved in 8 miles
away into a 1970something rental trailer, with plans to do what we
can with what we can on the house. I was planning to go back to work
after our son would be born and we would make good head way on the
house. But as you have read, these past 15 months allowed nothing to
be done on the house. Our dream would be to fix up Justin¡¦s
childhood home or rebuild there. We know families who receive such
tremendous help from Extreme Makeover Home Edition usually have more
children than us. We are just getting started with our family, and
are scared to have more, but are going to put it in fates hands. I
have a second cousin who was born with hirschprungs, so it may be
genetic doctors say. If we didn¡¦t have to pay rent to anyone, we put
that money toward DNA testing to see if Hirschprung¡¦s would happen in
our next children. And if it came back positive, we¡¦d pay to have a
female embryo, so our baby would be 6 times less likely to be born
with Hirschprungs. We would also move my dad up from California to
take care of him. I want my dad around his only grandchild while he
can still see 5% and have an influence on Steven. The Extreme
Makeover Home Edition cast and the people who make it all happen are
absolutely unbelievable. We cry twice every Sunday, once in sadness
for the family and again for the joy they give to needing families.
It would be an unbelievable dream come true to our family if we were
helped by this wonderful ABC show. Our lives would be lived so
happily ever after.