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!

Back to Kellisa's Path Blog

Anything is Possible!