Pushing Higher (2008)

Kellisa went another calendar year without a 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. Two nights before the concert, I bought three single seats spread throughout the arena for face value on eBay. I didn’t know what we would do once inside, but Kellisa was going to see Hannah and that’s all that mattered. We stopped at the information booth and found a helpful lady who escorted us to the accessible seating areas. We did not see a single disabled child or adult among the dozens of families in the reserved areas. Two families in one of the disabled areas offered to move closer together to allow us a space for Kellisa. The moms would go on to tell us that they bought the disabled seats instead of fighting for regular seats. They were bragging to us and acted like it wasn’t a big deal that they found a loophole in purchasing the hottest tickets of 2008 even though no one in their parties was disabled.

A Year Without A Surgery (2007)

FINALLY! 

2007 was the first calendar year that passed without Kellisa having to endure a surgery.

Kellisa really started to thrive with her new found 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.

We expanded our outdoor adventures beyond trails as Kellisa started kayaking. Her favorite part was helping to paddle and splashing her hands in the water.

Our big summer trip for the year was to the Four Corners region of the American Southwest. We hiked to the rim of Bandera Volcano, deep inside an Ice Cave, the Four Corners Marker, Arches and Canyonlands National Parks, Monument Valley, and Canyon de Chelly. This was the first trip where we really started pushing the boundaries of what’s possible with a new jog stroller manufactured for larger disabled kids.

Finding Adventure (2006)

2006 started with Kellisa’s 4^th 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. 

We took a family vacation to Arizona for spring break. Our itinerary included the red rocks of Sedona, a few national monuments, and the Grand Canyon. We completed several scenic trails in and around Sedona. The landscape was breathtaking and the rocky ground provided a nice surface for pushing Kellisa. The trails were far from ADA approved, but also far from challenging. Kellisa enjoyed being pushed up and over the rocks on the path.

We gained valuable experience as we hiked one trail in Montezuma Castle, Sunset Crater Volcano, and Wupatki National Monuments.  Each trail had it's own challenges, from rocks, to snow, to elevation changes. I was hooked and I could tell Kellisa was as well from her frequent requests for "more".

A Lost Year (2005)

After a couple real hikes in 2004, I thought 2005 would be our year to get out and explore new adventures. 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.

We attended a Wiggles concert when they played a show in Jacksonville. Kellisa had the time of her life. During the encore, I carried Kellisa towards the stage where she caught the eye of her favorite Wiggle, Murray. She blew him a kiss and he returned the kiss. 

Our entire summer was spent in doctor's offices, emergency rooms, and hospital rooms as Kellisa spent months fighting high fevers again. Just like 2003, the doctors couldn’t find a cause and every scan came back with a good looking shunt. Kellisa’s new Jacksonville neurosurgeon even tapped the shunt early in the process and ruled out any possibility of a shunt infection. The doctors tested for everything, including HIV/AIDS. After several months, the fevers went away as suddenly as they appeared without explanation.  

We Are Hikers! (2004)

I was traveling a lot for work and when I had to spend the week before Memorial Day weekend in Atlanta, I invited Lisa and Kellisa to join me. It was a mini vacation. I could join them for lunch and evening swims after dinner. I started researching hikes with wheelchairs. I found a short accessible trail leading to a viewpoint of the highest waterfalls east of the Mississippi only an hour from Atlanta. Finished with work, we drove to the trail on Saturday morning.  I was bursting with excitement. I found a hike I could do with Kellisa. It was a beautiful trail and I easily pushed Kellisa to the viewpoint. The waterfall was breathtaking. The endless mountain views were awe inspiring. Kellisa was having fun. This was Kellisa’s first wheeled hike on an accessible trail. I was disappointed beyond belief.

The trail was short and easy. I should have been happy, on top of the world ecstatic, but all I could see were the other trails in the park. The real trails. The trails not meant for wheelchairs. 

We drove to another trail that led to a different viewpoint of the same waterfalls. This trail was the exact opposite of accessible, it was steep, muddy, and full of rocks and tree roots. I became determined or possessed. I pushed Kellisa in her wheelchair up this crowded trail full of weekend hikers gawking at us. A few hikers offered to help, but I needed to get Kellisa to the viewpoint without help. I needed to test our capabilities. Kellisa’s endless giggles provided additional motivation as I struggled, but we made it to the viewpoint. Kellisa was probably the first (and still only) person in a wheelchair to see the waterfalls from this platform.

I declared us hikers!

End of the Roads (Summer/Autumn 2003)

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.

Both of Kellisa’s hips had become dislocated. Her hip bones needed to be cut and put back in place with screws and plates. Even with pain medications, Kellisa was in almost constant pain as she spent most of the six week recovery period lying on a mattress in the middle of our living room watching The Wiggles while moaning in pain and discomfort. There was little we could do for her, except be there to hold her hand, stroke her head, and change The Wiggles videos every 45 minutes.

Mom and The Wiggles Save Kellisa (Spring 2003)

Kellisa doing her best to smile for her
school picture while suffering through
 her undiagnosed shunt infection.

Kellisa was slowly dying before our eyes and no one in the medical community was able to figure out what was wrong. 

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 was seeing 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. 

One afternoon while Kellisa lay lifeless in a hospital bed, Lisa was changing the channels on the TV and stopped at The Wiggles. Kellisa immediately perked up and started to watch the four colorful singing and dancing grown men for the first time. This was her first sign of life in days. Once The Wiggles were over, Kellisa drifted back to a deep sleep. This pattern continued for days. Kellisa would use her minimal daily energy to watch The Wiggles.

Frustrated and desperate, Lisa demanded that the shunt be tapped. The neurosurgeon eventually agreed and I'm sure he just wanted Lisa to stop asking about the shunt. He stuck a needle into Kellisa’s head and pulled out some fluid. We could immediately tell by the look on the doctor’s face that it didn’t look good. His eyes literally jumped out of their sockets as he watched the cerebral fluid in the tube. Testing wasn’t necessary; he could tell the shunt was significantly infected by the amount of debris in the fluid. The neurosurgeon started preparing for emergency brain surgery.

Bloody Tears (2002)

Kellisa finally went a year without a 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.

Kellisa’s eyes were crossed. With everything else, we never really worried about her eyes until her ophthalmologist told us that Kellisa needed eye muscle surgery or she would go blind.  Even with the surgery, we were warned that she could still go blind. We had no choice, we sent our little girl off for another surgery. After the surgery, we were able to see Kellisa in the recovery area. She was so little sleeping in a full size bed. We sat there anxiously waiting for her to wake up and she didn't even cry as she came around. However, she did have a few tears of blood rolling down her face that we weren't prepared to witness. 

84 Cents (2000 & 2001)

Kellisa was up at midnight so she could welcome the new year, 2000 into her life since it was a major accomplishment and reason to celebrate.

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 to take 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.

Kellisa's Path- The First 18 Years

As we approach Kellisa's 18th birthday, we will be sharing many posts to document Kellisa's life from 25 week micro-preemie to 18-year-old. Kellisa's perfect birthday would be an experience instead of gifts and we have quite the experience planned. Although, Kellisa will get a few little gifts to have some things to open. 

Some, but not all, of the stories and pictures we will share in the coming weeks have been included in previous posts, but we have never provided a chronological history of Kellisa's entire life before. It's been a wild ride of extreme valleys and mountaintops and everything in between. Hang on!

We appreciate every second of Kellisa's life and want to share it. Our hope in sharing is that it might provide a little light representing future possibilities to families coming up behind us in the disabled world when the future might appear black. When we were surrounded by fear and uncertainty, the Internet was in it's early years and there wasn't a lot of information for families like ours. We hope to be a resource and maybe even an inspiration. But, if nothing else, we simply hope you enjoy the story. I can say it's been a long and hard path, but it's also been filled with a lot of love, laughs, and adventure!

1999- Kellisa's first year has been written about in three chapters posted previously on this website. You can click here to start our story at the very beginning. Starting tomorrow, we have shorter summaries with pictures scheduled to post every morning covering Kellisa's first 17 years, starting with the years 2000 and 2001.  

Thank you!

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