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.
I handed
Kellisa (in a chest baby carrier) and her oxygen cylinder to Lisa who followed
along on a trail as I swam parallel to them in the spring run. The water
felt amazing on a day with temperatures in the 80s. This was Kellisa's
first official hike. Unfortunately, I don't think we took any pictures of this
historic day.
We always
knew Kellisa was delayed and hoped she would catch up with her peers. The
doctors would often say, “She can be anywhere from mildly to significantly
disabled.” We just enjoyed Kellisa at her own speed. She always needed to
be held and cuddled. I worked a few minutes from home and would come home for
lunch and just hold Kellisa for the hour. It never got old.
Kellisa
started wearing glasses and was placed in leg braces. Her sensitivity to noise
made daily life difficult. Lisa and I learned to walk on eggshells in the
house. We couldn't even turn on the kitchen faucet without it frightening
Kellisa to the point of uncontrolled crying that would often last 30-45
minutes. We would hold her, rock her, talk gently to her, nothing would make
her feel safe after an unexpected noise. We had a local restaurant that we used
as a gauge to see if Kellisa was improving. First, we would open the door, and
the noise would set Kellisa off crying. After a couple of months, we could make
it to the hostess. The next step was actually being seated but leaving before
we ordered. The closest we ever came to eating at this restaurant was placing
an order before I had to take Kellisa to the quiet of our car while we waited
for Lisa to bring our food. We didn't eat at a restaurant until after Kellisa's
2nd birthday.
While holding Kellisa one evening, she had a seizure that lasted 45 minutes
requiring a 911 call. The responders left with Kellisa and Lisa in the
ambulance. I gathered a few things and rushed to the hospital. When I arrived,
they had no information about Kellisa. She never arrived. This led to some
scary moments for me and this was before we had cell phones, so there was no
way for Lisa and I to get in contact with each other.
The paramedics determined in the back of the ambulance that Kellisa needed to
be transported to the regional hospital instead of the smaller local hospital.
Thankfully, they sent word back to the original hospital where someone tracked
me down to tell me that Kellisa was actually at a different hospital.
Kellisa’s
shunt needed to be replaced in May of both years. The shunt surgery in 2001 was
denied by insurance because, “At this time it’s not absolutely medically
necessary”. We didn’t have time to fight the insurance company because we
knew a failed shunt would lead to more permanent brain damage and possible
death. If the neurosurgeon said Kellisa needed emergency shunt surgery the
following morning, we trusted his opinion over someone at the insurance company
crunching numbers.
We needed to protect what precious brain Kellisa had, so we tapped into
everything we had and charged her brain surgery to credit cards. When Kellisa
was discharged from the hospital 69 miles from our house, we had the gas in the
car, old food in the refrigerator, undesirable groceries in the pantry, and
exactly 84 cents between us. The surgery took everything we had, but it was a
success.
This was our financial low point, but not having money made grocery shopping
easy. My weekly food consisted of 20 frozen cheese burritos and a 10 pack of 3
Musketeers bars while Lisa got a loaf of bread and the cheapest jar of peanut
butter. My only food decisions were, which day to have only two burritos and
which three days could I have two candy bars. I want to say our weekly food
allowance was $12. I ate so many burritos and 3 Musketeers in the following
months that I won't touch either of those items to this day. And since we
couldn't afford gas, I rode my bike to and from work. I even rode it on the
side of highway a few times when I had to travel 20+ miles each way for
something in Daytona Beach.
We appealed against the insurance company's
decision to deny brain surgery, and it was eventually permanently denied. We
were living in paradise, but it was obvious that I needed a new job with
different insurance. Plus, the 138-mile round trip drive to the doctors and
children's hospital in Orlando was getting old. We (mostly Lisa and Kellisa)
were making the drive 3 and 4 times most weeks because Kellisa was being
followed very closely by many specialists. When Kellisa had overnight stays,
Lisa would sleep in the hospital room, and I would squeeze into the back seat
of a two-door hatchback for a few hours (only 1 parent was allowed to spend the
night in the room). We wanted to stay in Florida but needed to live closer to a
children’s hospital. I changed jobs and we moved from Edgewater to Jacksonville
in August 2001.
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