wow, so sorry to hear you and your family going thru such a hard
time. and so sorry to hear about your son's condition. How is he
doing now? I hope the surgery goes well so that he can get better and
be a healthy and happy little boy. he's been thru so much in such.
I'll definaetly keep your son and your family in my prayers. you
sound like a very deserving family and I wish you good luck and hope
you get picked to be on the show for a makeover. Have you sent an
application in to the show? you live in WA or Oregon? hopefully
you'll have good luck, since the show is doing all 50 states and they
havent done WA or Oregon yet. Good for you in telling those Dr's that
something was wrong when they kept telling you your son was fine. you
saved your son's life, and your a wonderful mother. I wish you all
the best that your son can be cured and that you'll be able to have
more beautiful children without the disease. let us know how things
go. God Bless.

--- In
Extreme_Makeover_Home_Site_Edition@yahoogroups.com, "vitaminvixen"
<vitaminvixen@...> wrote:
>
>
> 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.
>