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.
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The one
normal thing we did was order a large wooden stork to be placed on our front
lawn for Kellisa’s arrival. It was huge with a large red heart painted with
Kellisa’s name and date of birth. When we arrived home, we took celebratory
pictures of Kellisa with the stork in front of our house. After the pictures,
Lisa carried Kellisa through our front door for the first time. Kellisa was
home.
My dad
wasn’t known for sharing his feelings. He kept them inside due to a rough
childhood without a father. His father showed up unexpected to say “Goodbye” as
my dad left for a tour in Vietnam, just in case my dad didn’t make it home
alive. This was the last time my dad would see his father and I would never
know my paternal grandfather.
My dad
learned early and often how to keep his feelings from others. I can only
remember him telling me that he loved me once and that was while he was hugging
me right after Everett passed away. He whispered those three words into my ear.
This would be the first of only three times I ever saw my dad cry. The second
would be when my mom joined Everett 8 years later. The third was earlier in the
day when he realized we lost Kirsten.
After
many years of countless negative results, I failed to get excited while Lisa
went through the process of completing the test. To our shock and excitement,
the test came back positive. It was after 10pm on New Year’s Eve, but we wanted
to be 100% sure before we got too excited. Lisa found a clinic open and we
raced to have another test completed.
