Below are some pictures taken in the Neonatal Intensive Care Unit of RUSH Hospital in Chicago shortly after Kellisa was born on May 23, 1999. We recreated the pictures to have some fun while celebrating her 18th birthday on May 23, 2017.
Wednesday, May 24, 2017
Tuesday, May 23, 2017
|Lisa Marie Kain|
May 23, 2017 - Kellisa's 18th birthday! A huge accomplishment and cause for us to be proud as we celebrate her life to this point. I've been agonizing about my post for this day since I was at a loss for a narrative. Lisa came to the rescue and for the first time in this blog's history, Lisa has written a post about this day and our gift of flights to Kellisa last week.
Last Tuesday, we spent an entire day flying around the country to celebrate Kellisa's 18th birthday.
By now, you may realize that Chris is a bit extreme when it comes to travel. Several months ago, he started talking with Southwest Airlines (his carrier of choice) about the potential to fly as many commercial flights as possible in one day. At that point, he had been working on the plan for a while but realized he needed their help to perfect the route. They were very supportive. A route was selected, and tickets were purchased. I was informed of this plan after the arrangements had been firmed up with Southwest. Chris knows I do not like to travel and gave me limited information about what the day would entail. When I decided to participate, I told him I did not want to know the specifics because I could not handle the truth. If I had any idea, I never would have gone on this trip, but I am so glad I did.
Monday, May 22, 2017
Our family would relocate from Jacksonville, FL to Sacramento, CA in 2016 for my job. Our plan to move at the end of the kid's school year was changed when Lisa accepted a position that started in mid-January.
After spending many New Year's Days exploring the Okefenokee Swamp, we spent the first day of 2016 at the Wichita Mountains Wildlife Refuge in Oklahoma.
We were driving Lisa's van to California over the long holiday weekend and chose a route that went through Oklahoma so Laurel could claim a new state visited and knock off another state that both girls hiked together.
As a micro-preemie, I promised Kellisa that we would visit all 50 states by her 18th birthday. Later, I would expand the original promise with the addition of both girls hiking at least one trail in each state. In fact, with Kellisa's 18th birthday less than 18 months away, 2016 was mostly filled with our move, getting settled, and hiking in the remaining states.
After Oklahoma, the girls had 11 states remaining to hike together and by Thanksgiving, after visiting Arizona, Utah, Nevada, New York, Massachusetts, New Hampshire, Vermont, Iowa, Illinois, Hawaii, and Alaska, that number would be zero!
Sunday, May 21, 2017
Friday, May 19, 2017
The little girl who wasn't suppose to survive more than a few hours at most turned 16-years-old in May 2015. Kellisa endured 22 surgeries, countless seizures, and too many medical appointments and tests to count or even make an educated guess before arriving at her milestone birthday.
Kellisa's first wilderness experience happened on January 1, 2000 with a walk attached to mom's stomach at Blue Springs State Park, FL. 15 years later, to the day, we returned to the park for our first outdoor excursion of the year. We stopped at Merritt Island National Wildlife Refuge the following day on our drive back home.
Left & Middle- Blue Springs State Park Right- Merritt Island National Wildlife Refuge
Lisa was in the final stretch of completing her master’s degree and needed as much peace and quiet in the house as possible. I knew it would be easier to travel with both girls than to try and keep them quiet in the house.
Laurel not only wanted to join her sister on her adventures, but it had become clear that Laurel also shared the same passion for travel, hiking, camping, and wildlife observations.
As the year started, I was entertaining the idea of hiking a trail in all 50 states with both girls during the 2014 calendar year.
I was in the early planning stages when we went on our semi-traditional hike in the Okefenokee Swamp on New Years Day. It's interesting how the girls can fight in the backseat as we're driving down the road, but as soon as we hit the trail, they are best friends and love each other. Laurel loves to help Kellisa by pushing her and she even has a great ability to get Kellisa more verbal than usual and has a knack for teaching her new words. Kellisa really responds to Laurel in the wilderness and enjoys it when Laurel pushes her. She really cracks up when they hit a rock or root, I think she thinks it's Laurel doing it on purpose and she's probably right, at least some of the time.
Thursday, May 18, 2017
After Kellisa's cancer scare at the end of 2012, I wanted 2013 to be a big year for Kellisa. I had the idea of hiking a trail in all 50 states in one year and decided to make an attempt at that goal.
We started with a 25K race across the desert in Big Bend National Park in January. Kellisa was the first wheelchair finisher in the history of the race.
Laurel joined us on several hikes, including across an ice road in Voyageurs National Park and a 4.2 mile race across frozen Lake Superior to an island and back in Wisconsin.
I also took Laurel on a few trips without Kellisa to attempt to keep things fair.
Wednesday, May 17, 2017
I'm sure most people don't travel from Tampa to Sacramento by commercial airlines and purposely schedule 8 stops along the way, but Kellisa is not most people. Kellisa loves to travel by any and all means as often as possible, but flying is probably her favorite. We were in the middle of our cross country move last year when Kellisa turned 17 and didn't really do anything special. Kellisa did have a huge Sweet 16 Adventure and I wanted to top that weekend for her. Kellisa loves severe turbulence, but I couldn't guarantee a flight or flights with enough turbulence to make her happy, so I thought about how much she loves takeoffs and landings...especially if they're rough. Next thing I knew, I was researching on Southwest.com to see how many segments we could schedule for one day with as few change of planes and tight connections as possible since it's very difficult to transfer and run through airports with Kellisa. I reached out to Southwest for help on routing after spending many hours online and after a few weeks of back and forth emails, I selected the above itinerary because it allowed us to stay on the same plane the entire day. Southwest really came through for us.
Kellisa's stat line for the day:
Naps- 0 Seizures- 3 Flight Segments- 8 Hours on Plane- 20 1/2 Total Awake Hours- Exactly 24
Much, Much more will be released about this day in the coming days and weeks!
Tuesday, May 16, 2017
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 afew local hikes, and Kellisa's first driving lesson in a golf cart.
Top Left- Chasing Laurel (Okefenokee Swamp) Top Right- Julington-Durbin, Jacksonville, FL Bottom- Golf cart driving lessons, Peace River, FL
Monday, May 15, 2017
Sunday, May 14, 2017
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 much discussion, we agreed that we were interested. I was still out of town the next night when Lisa called and asked where she could find a hammer. Lisa needed the hammer to build our crib, just in case were we 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.
The next evening, less than 48 hours since we received the first phone call and more than two years since we started the process, we had a beautiful little girl in our home. I advised Lisa not to get attached because a finalized adoption was not guaranteed. I listened to my own advice for maybe 20 seconds. My heart immediately melted as soon as I looked into Laurel’s eyes. She was my daughter!
After being an only child for more than 11 years, I'm not sure how much Kellisa understood and she definitely had no idea how much her life was going to change. Kellisa wanted a sibling. In fact, when we were at wishing wells, Lisa would give Kellisa a coin and she would throw it in the water while shouting, "Baby". She wasn't good at keeping her secret wish contained, but sure enough...it came true!
Friday, May 12, 2017
We continued submitting on children into the new year without and success. We were lucky if we received an email 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.
Thursday, May 11, 2017
The Okefenokee Swamp, the Land of Trembling Earth.
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 out grown 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.
We had to go to southern Florida for a funeral in the middle of January which allowed us the opportunity to visit the Everglades over a beautiful weekend when the mosquitoes were mostly under control. Kellisa loves observing many alligators and enjoyed the many miles of trail we explored.
Wednesday, May 10, 2017
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.
Tuesday, May 9, 2017
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.
Monday, May 8, 2017
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.
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".
Saturday, May 6, 2017
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.
Friday, May 5, 2017
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!
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.
Thursday, May 4, 2017
|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.
Wednesday, May 3, 2017
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.
Tuesday, May 2, 2017
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.
Monday, May 1, 2017
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.
Kellisa will turn 18-years-old in May 2017.
Kellisa was born on May 23, 1999 and wasn't expected to survive more than a few hours. And that was based on a full term pregnancy. Lisa and I needed her to survive. I doubt Lisa and I would be alive today if Kellisa didn't survive. Despite being born 15 weeks premature, Kellisa was born a warrior!
In Kellisa's early days when she already lived long past her life expectancy, I often dreamed about Kellisa turning 18 years old. I'm sure I picked that age because it's when your children officially become adults. Like most parents, I had ideas of Kellisa graduating from high school, going off to college, dating, getting a job, and all the other "normal" things kids do on and around their 18th birthdays. Of course, none of those milestones will be hit by Kellisa this month or any other month. I've come to accept those facts over the years even though I'm sure the thought of missing those things will depress me more than once this month and beyond.