My husband Justin & I have talked about applying to EMHE. He thinks
there are many other families who need help worse than us. I think we
have just finally gotten somewhat comfortable with our sitations.
Justin works very hard every day, he is too proud to admit that we
too are struggling to get ahead. We have had several people metion to
us that it would be a great idea for us to try out for EMHE. Our last
15 months have been very difficult. So here is our background, please
read and reply with some input to me. Thank you so much for your
time and opinions. Have a happy and healthy day :).
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 the nurses
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 bottom
half was thin like a pencil. 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 in Tacoma,
WA. 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 not only did he have a staph infection all over his face
and skin, but blood tests revealed Steven's many allergies. He has a
really high allergy to cat dander, and even dogs. Which we were told
by neighbors, the woman before had a dozen cats in here. We even own
a cat named Rebel, but we have pretty much confined him, like the
allegist said to. He also has many food allergies; peas, bananas,
oranges, wheat, rye, soy, pork, and beef… 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, has been $20-40
lately. Justin has worked some overtime and they say they overpaid
us over several months $1300 and we are paying them now…?? 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 a month, 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. 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.