After three surgeries in 2011, Kellisa was able to go another year without a surgery.
We
started the year off on the 1st of January with a day trip to the Okefenokee
Swamp followed by a few local hikes, and Kellisa's first driving lesson in a
golf cart.
Top
Left- Chasing Egypt (Okefenokee Swamp) Top Right- Julington-Durbin,
Jacksonville, FL Bottom- Golf cart driving lessons, Peace River, FL
The year started off on a high note as Egypt’s adoption was finalized in January.
Lisa
received an unexpected phone call in October. “We know you’re only interested
in school age children, but would you be interested in a 16-month-old
girl?”
They
needed an answer immediately. I was out of town on business when Lisa called.
Without hesitation or deep discussion, we agreed that we were interested. I was
still out of town the next night when Lisa called and asked me, “Where can I
find a hammer?”
Lisa
needed the hammer to build our crib, just in case we were chosen as the family
for this little girl. Instead of saying, “You don’t need a hammer to build the
crib,” I told Lisa where to find a hammer. I also figured we had zero chance of
getting the girl.
We continued submitting on children into the new year without any success. We were lucky if we received an automatic email reply with the subject, "Your Submittal Has Been Received".
Our first
trip of the year was during Kellisa's spring break a week after I completed my
2nd Bataan Memorial Death March. The first weekend was also Easter, so we spent
a few days in Texas visiting family before Lisa went home and Kellisa and
headed for a week in the Southwest. While in Texas, we went for a nice hike at
Brazos Bend State Park where we enjoyed its abundant birds and alligators.
One of
our all-time favorite places to explore and we tried to start each year off
with a visit. January 1, 2009, was no different and it would set the pace for
what would become Kellisa's most adventurous year by far.
Kellisa
had outgrown even the largest baby jog strollers, and we broke two frames on a
jog stroller made for special needs children. We needed a new solution and
after many hours of research, we purchased a WIKE. The chair looks awesome and
offers a ton of weather protection; however, it is not built for rugged trails.
We still have it and it has its uses; it's just not an all-around mobility
device for our needs.
Kellisa turned 27 years old today. We let her sleep in a little
and ended up going out for a movie and dinner. Everyone enjoyed the new movie,
Michael, about Michael Jackson. Instead of cake, we lived it up at an ice
cream shop on our way home where we sang Happy Birthday to Kellisa. Once home,
Kellisa opened her cards and presents before spending the rest of the evening watching
TV with her family in the living room.
Not bad for the 25 week micro-preemie.
Kellisa
went another calendar year without surgery.
Hannah Montana came to Jacksonville in January. The concert sold out in minutes before we were able to buy tickets. We even tried to buy accessible tickets without success. I couldn’t pull the trigger to buy three tickets together that were selling for thousands online. It was breaking my heart that I didn’t have tickets for Kellisa.
Kellisa
really started to thrive with her newfound medical stability. She started
taking dance lessons and it was obvious from the start that Kellisa has the
heart of a dancer. Kellisa danced in her first recital, and she garnered the
loudest cheers from the audience during the encore.
2006
started with Kellisa’s 4th surgery in four months. Both hips
were dislocated again, requiring another surgery of cutting bones, inserting
screws, and hardware. It was followed with the same six brutal weeks of
recovery.
After 18
months without a trip or trail, I was eager to get Kellisa back outside. I
wanted to push our limits and see what we could do on trails. I even bought the
largest baby jog stroller I could find so we wouldn’t have to use her
wheelchair anymore.
After a few
good hikes in 2004, I thought 2005 would be our year to get out and explore. The
outdoors would be ours!
I was
wrong, very wrong!
The year
started out with a surgery to remove the hardware from Kellisa hips. The six-week
recovery period was as brutal as the original surgery. Thankfully, The Wiggles
were there to help Kellisa through another difficult six weeks.
Kellisa
wasn’t drinking and her only fluid intake was through the limited food she was
eating. There was only so much pudding we could force into her mouth. She
wasn’t thriving and required surgery to place a G-tube in the summer. With a
G-tube, we would be able to give Kellisa the fluid she needed, and prescription
formula would guarantee she would receive all the nutrition required to start
growing. Of course, Kellisa suffered from complications that required a second
surgery to remove the original G-tube and replace it with another. The doctor had
been placing G-tubes for 26 years and Kellisa was the first patient to ever
require a second surgery. Kellisa was an expert at confusing doctors.
Kellisa's
smile and love of life were gone. She was battling high fevers for weeks.
Nothing was bringing her temperature down to normal. She saw a doctor every few
days and was in and out of the ER and hospitals without any relief. Once again,
Kellisa was baffling the doctors.
From
early on, Lisa was convinced it was the shunt. After a CT scan and MRI, we were
assured that the shunt was fine. Kellisa's shunt had been in place for a long
enough time that a shunt infection was very unlikely. The neurosurgeon didn’t
want to tap the shunt to check the cerebral fluid for an infection because if
it wasn’t infected, the procedure itself carried a 2% risk of infecting the
shunt.
Kellisa
finally went a year without brain surgery. However, her seizures took a turn
for the worse. Kellisa spent five days in the hospital paralyzed after one
seizure. The neurologist had no choice but to max out Kellisa’s medications to
get the seizures under control. She continued to have seizures, just less
frequent and severe with paralysis usually lasting less than an hour.
Later in
the day, we went to Blue Springs State Park about an hour from our home. We saw
a sign that swimming was allowed in the spring, but there was also a warning
about the possibility of alligators in the water. Florida was still very new to
us and the idea of taking a plunge on New Year's Day into 72-degree water was
appealing to me.
