Corbin L.
Oregon
Birth Date - July 9th, 2002
Main Diagnosis - Pulmonary Hypertension
THEME: Beach Scenes that include water, waves, and the sand. And things
you would find on the beach, like sandcastles, shells or creatures (like
starfish) that could wash up on the beach. (Patterns can include a shore
bird, a boat, or a lighthouse (in the distance) IF it is part of the beach
scenery.
Quilt Deadline:10/15/2014
Corbin's Story
When Corbin was born it was found out he had a heart defect known as patent
ductus arteriosis. At a year old they did a procedure to fix the heart and
discovered he had pulmonary hypertension. They decided to wait to fix the
heart to be sure it was the right thing. Six months later, they decided to
fix it. They watched him for five years. Every six months, he would go in
for an echo and every time they said it looked good. In 2005 his doctor
said he didn't need to be followed any more since everything had been great
for so long.
Of course, Corbin was still dealing with other issues. When he was 4 months
old, he didn't hit his milestone of rolling over. As time progressed, he
consistently fell behind in his development, but consistently moved forward.
He was late to walk, and has never talked. He began physical therapy,
occupational therapy, and speech therapy at 4 months old. He finally began
walking when he was 2 and a half. He went to Head Start and began a special
needs kindergarten class when he was 5. Still nonverbal and with more and
more classic signs of autism showing, I had him reevaluated and be was
diagnosed with autism in 2009 at the age of 7. The signs that led us to have
him reevaluated were that he would become fixated on things, like marbles,
credit cards, certain commercials; he started hand flapping and head
banging, and of course was not talking.
Through the years he has gone through stages of fixations, but a few that
have not gone away are his infatuation with colorful candy (jelly belly is
his favorite, followed by Skittles, and M&M's; commercials for stores (Party
City, Walmart, Fred Meyers, Kohl's); pharmaceutical commercials ( lunesta,
mucinex, symbicort, restasis, cyalis..((which he takes for his lungs));
cleaning supplies: (Scrubbing bubbles, Lysol, Swiffer sweeper, and blankets.
Corbin loves to be alone and blankets provide him the privacy he likes when
people are around, and I frequently find him in his room under a blanket.
Now he has an iPad and through the help of school and the fact that he is
just amazingly smarter anyone could know, he is learning to spell and
communicate. He can spell hundreds of words and string together 3 and 4
letter sentences. His teacher is amazed everyday with his abilities.
At a checkup with his pediatrician in 2011, his doctor heard a heart murmur
and sent us to a cardiologist. After tests, it was shown that he has
pulmonary hypertension, and that it never even went away. There was some
confusion when he was given a clean bill of health in 2005 and he actually
had the disease all his life. He immediately began on treatment for PH, but
there is no cure. And furthermore, because of is autism and his dislike of
any sort of confinement, there is only one medication he can take. It is an
oral medication. All the rest are continuous intravenous drugs and drugs
that are inhaled. All of which he cannot/ will not tolerate.
We took a Make-a-Wish trip to San Diego last summer as that is the other
thing Corbin is obsessed with - The Beach! We drove down since he cannot
fly because he won't wear oxygen.
Corbin does not have normal checkups like other PH patients since he has to
be sedated for EVERYTHING and sedation is dangerous for him. He is stable at
this point, but as anyone who knows about this horrible disease, that can
change in a heartbeat, literally.
Because he has autism, he is ineligible for a lung transplant. I believe
that since he has autism and other health impairments (he wears ankle
braces), he doesn't run and jump and play like an "average" kid.
He is happy almost all the time, and it's my mission to make his life as
happy as can be. Of course he gets mad when I have to comb his long hair and
braid it, or hold him down to brush his teeth, I do it in love.
I pray and hope every day that they will find a cure for this disease.
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