Saturday, February 5, 2011

About Me & My Family through 2008

(this is what I had worked on for years on MySpace... I wanted to post it here, too, for those who do not frequent MySpace)

Born January 1973, I grew up in a humble, Christian
home with my mom, dad, grandma (dad's mother),
younger brother and much younger sister.
We lived on 4 acres in the country.
We raised chickens, rabbits and cats; had a large
vegetable garden with many fruit & pecan trees.
My dad, a self-employed CPA, had his office
next door to our home. My parents taught children's
Sunday school classes at a nearby Baptist church.
My mom also worked as church financial secretary.
I was SAVED and baptized when I was 9 years old
In school, I was in the Zenith program and Advanced
Honors classes. Senior year, I was appointed
yearbook editor.
I earned a full scholarship to a
junior college,
where I studied journalism, and
aspired to be
a talk show hostess. Driving to a class,
my vehicle
overheated. Radiator fluid badly burned
my right arm.
I had physical therapy, but could not
drive or even
write for months. So, I dropped out
of college.
I went back to another junior college
in 1994.
I interned at our local CBS affiliate,
where I went on to become producer
then assignment editor.
9 years later, I got an offer
to work as a Medical Records
and Patient Intake
Coordinator at the Permian Basin Rehab
I prayed about it and believe God was calling me

for a change. But there was an even bigger change
on the horizon.

I became a mother and wife in 1994 when I married a
widower. James lost his first wife in a car accident
just before their daughter, Steffany turned a year old.
My family and I knew his wife when she was a girl
in our church. We all felt an instant connection.

Our son, Joshua came along in 1996.

In 2004 my husband’s work transferred him about
a 5 hour
drive away from our families and hometown.
We sold our house and moved away from our familiar
I took the summer off to settle our new home.
By the time I looked for a new job in the San Antonio area,
a 24-hour local news station disbanded, flooding the market
with news professionals. So, I found work with a small business
specializing in Flexible Spending Accounts (Cafeteria Plans).

A few months after the move, our son, Joshua - who had been
healthy all his life - suddenly collapsed and went into
respiratory arrest. It took months for doctors to find the cause
of his collapse.

He has a very rare & serious disorder that causes his
breathing to be too shallow, stops his body from making
growth hormones or properly regulating his body
temperature and hydration. It has left him with a trach
tube in his neck so a ventilator can help him breathe.
He also needs daily growth hormone injections and
other medications. What's more, doctors say there is
no known cure for this disorder.

Because Joshua's disorder is so rare (at the time 25 cases
were known in the world) there was a big write-up
in the San Antonio Express News.

That article led to an hour-long documentary being made
about Joshua and the onset of this disorder.
It was shown on Discovery Channel and on Discovery Health Channel.

March 3, 2005
(8-and-a-half years-old) spikes a fever and collapses.
I take him to the Texas Med Clinic where his oxygen
level is down to 50 percent (it ..should.. be 100 percent)
Ambulance rushes Joshua to hospital.
He is admitted to Pediatric ICU.

March 4, 2005
early morning hours

Josh goes into respiratory arrest.
He has to be revived ..5 times..!

March 17, 2005
After 2 weeks in ICU,
Josh released from hospital
He goes back to school
then enjoys the summer

Aug 30-Oct 3, 2005
Josh extra sleepy again,
his blood oxygen levels falling again.
He is admitted to Methodist Children's Hospital
A doctor in Chicago helps San Antonio doctors
make the diagnosis of

..Late-Onset Central Hypoventilation Syndrome
with Hypothalamic Dysfunction...

Sept 16, 2005
Josh gets a tracheostomy (tube in his neck)

Sept 19, 2005
Josh ..9th Birthday..
in the hospital in isolation
because he developed MRSA infection.

Oct 2005
Josh home from hospital
but he has to hook to ventilator when he sleeps.
We wait to hear from Rush Hospital
Josh needs to go to Chicago to see Dr. Weese-Mayer

Jan 29, 2006
Josh sings "I Can Only Imagine" for our church
not a dry eye in the place

Feb 2006
Joshua goes back to school
after the school district hires a one-on-one nurse for him.
(Remember, he has not been able to go to school
since the end of August, when he was
hospitalized for 6 weeks)

July 2006
Make A Wish sent us to Orlando


July 30, 2006
San Antonio Express News prints story
about Joshua in their Life Section

Sept 2006
2 not-for-profit websites for chronically ill children
feature Joshua on their sites.
To see his pages click on their
logos below:

Sept 6-13, 2006

Josh hospitalized due to high sodium level in blood

Sept 19, 2006
10th Birthday
out of the hospital less than a week ago

Sept 21, 2006
Josh sworn in as honorary Cibolo Police Officer

Sept 24-29, 2006

to see specialist at Rush Hospital

Chicago skyline from hospital's apartment building

Josh studied day & night

a test shows Josh could stop breathing altogether
if the power fails & machine turns off

Dr. Weese-Mayer says Josh needs
to be on the ventilator 24 hours a day
and he is NOT a candidate for the diaphragmatic pacemaker
- at least not now.
He has to keep his trach ..probably forever...
Very disheartening news!
And he needs nursing care 24 hours a day.

Josh has ROHHAD

What is ROHHAD?
(Rapid-Onset Obesity With
Hypothalamic Dysfunction, Hypoventilation,
and Autonomic Dysregulation Presenting in Childhood)

Read about ROHHAD below in an article
by Dr. Debra Weese-Mayer


Oct 2006
Trip to Odessa

Nov 2006
TV Producer contacts me about
doing a documentary about Joshua
for Discovery Channel

Nov 2006

Josh starts taking growth hormone shots
6 nights a week!

Feb 2007
Josh approved for Medicaid waiver program
but had to spend a night
in a nursing home first

Feb 2007
TV Crew comes from ..London, England..
to shoot interviews for Discovery Channel documentary

Feb 2007

Josh's Baptism

March 2007

Josh rides along with Cibolo police

March 2007
An article I wrote about Joshua
published by online
Christian magazine.
Read it by clicking here:
Joshua's Story  A Mother Clings to Her Faith

June 2007
Family Vacation to Rockport/Port Aransas, TX

July 2007
Watching Cowboys Training Camp
at Alamodome, San Antonio, TX

Aug 20 2007
Josh Pilot for a Day

Sept 17, 2007
Josh got to start 4th Grade
after school district hires him a new nurse
(another nurse quit the 1st day of school this year)

Sept 2007
Josh's 11th Birthday Party

Oct 25, 2007
Joshua and class attend field trip
to the symphony in Seguin. Then lunch in a park.

Joshua's sodium level in his blood
gets very high (meaning he is very dehydrated) Friday when
he went to the pulmonologist (lung doctor).
This can be quite dangerous, so he has to drink
an extra lot of fluids - even though he doesn't feel like
he needs them - and then go back Friday of next week
for more bloodwork.

Nov 8, 2007

premiered on

Dec 2007
Christmas Happenings

Jan 4 2008
Spurs vs Knicks Game at AT&T Center

Jan 12 2008

Benefit Golf Tournament
raised about $2,000 for
wheelchair accessible van
for Josh's ventilator cart

Mar 5 2008
Josh meets Robert Horry
of the San Antonio Spurs Basketball team

June 2008
CCHS Family Network Conference
Orlando, FL

Aug 1-4, 2008
Josh and Mom fly to Los Angeles, California
Josh participates in MRI brain mapping study,
see some cool Movie Theaters where big Hollywood Premiers are held,
and visit new friends who have CCHS

Nov 2008
Josh Wooten bowling for Special Olympics 2

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