Sunday, December 31, 2017

Reaching 18 (2017)

After moving across the country in 2016 and finishing our quest to hike in all 50 states, 2017 was a slow travel year (by our standards), but very exciting! 

The year started out with some of Kellisa's hiking adventures featured in the new book, families on foot. We also went to Yosemite National Park for the first time and the girls enjoyed Disney on Ice in Sacramento. Our family vacation for the year was a week in the Pacific Northwest where we visited several national parks and hiked with a large group of wheelchairs. Kellisa really enjoyed not being the only one in a chair on a trail.

Egypt continued to love all things that allowed her to spend time in water, including taking water polo lessons. We enjoyed several local hikes in the valley and Sierra Nevada Mountains. Kellisa went to a dream prom with a date and both girls went to several community dances alone. On of Egypt's highlights was borrowing a friends dog for a "Doggie Dash" and I continued to take many pictures of the moon.

Wednesday, December 27, 2017

What a Difference 12 Years Can Make

49ers and Jaguars

JAX 10 SF 9 (12.18.05)

SF 44 JAX 33 (12.24.17)

We were season ticket holders for the Jaguars in 2005 and watched the 49ers game when they visited Jacksonville from Kellisa's hospital room. It was a rough fall/winter for Kellisa as she endured brain surgeries in October, November, and December. Always the trooper, she was able to attend every home game except the 49ers and that's only because she was still in the hospital. Back in October, we went to a Monday night football game the day after she was released from the hospital. After being trapped in the hospital, Kellisa was more than ready to get out and have some fun. It helps that the Jaguars won that game too.

Fast forward to 2017.

We no longer had season tickets, no longer lived in Jacksonville, and Kellisa had a little sister for the past 7 years. We moved to the Sacramento area in 2016, but remain diehard Jaguars fans. When the 2017 schedule was released, we were disappointed that our "local" Jaguars game 2 hours away at Levi's Stadium in Santa Clara, CA was scheduled for Christmas Eve. Afraid that it would interfere with holiday plans, we did not purchase tickets.

Sunday, December 17, 2017

The Placer County Big Trees Grove

Big Trees Grove
Tahoe National Forest

December 2017

We have traveled far for specific trails, but I don't think we've ever driven so far off any beaten path as we did to reach the trailhead for the Big Trees Grove in Tahoe National Forest. After leaving tiny Foresthill, we drove 25 miles on a beautiful two lane road that zig and zagged as it climbed and descended many ridges of the Sierra-Nevada foothills. There was not a single straight or flat section for the entire length. Also, you do not pass a single house, business, or really anything other than trees and sweeping views. I didn't keep track of how many cars we saw on this part of the drive to the trailhead, but I'm confident it would have been far less than five.

Not surprisingly, we were the only car in the parking lot at the trail head. My Garmin told us our elevation was just under 5,600 feet above sea level. The temperature was 40F and there was a pretty good wind whipping through the forest. The sign for the trail was missing, but it was fairly obvious and we started our lollipop hike down the ridge. The trail was littered with large pine cones which are not a friend to the person pushing the Hippocampe. However, Kellisa loves these little annoying obstacles because she either bounces over them or lunges forward a little if they lock up a wheel.

The highlight of the trail is of course, the big trees. There are six giant sequoias in this small grove far from everything, including other giant sequoias. In fact, these six trees represent many anomalies: smallest grove, northern most grove, and most isolated grove. If you count the two giant sequoias that fell in 1861, the grove actually has eight trees. 

Sunday, December 10, 2017

Airports Visited

Airports Visited:

Chris- 113   Kellisa- 52   Lisa- 44   Laurel- 37

Lisa visited Idaho for the first time in 2017 bringing her states visited total to 40 something and it was the first calendar year that Chris, Kellisa, and Laurel didn't have any new states to cross off their "visited/hiked" list. As the year is coming to its end without any trips planned, I felt the need to update some kind of list. While thinking about the possibilities, I realized that I added several new airports visited for my "mostly" Monday-Friday job this year (Calgary, Bismarck, Omaha, Wichita, Tulsa), so I started to think about Lisa and the kids. I pulled out my trusty road atlas and started making lists of airports visited.

Laurel visited four new airports in 2017: Boise, Columbus, New Orleans, and Dallas- Love Field. Lisa added three: New Orleans, Dallas-Love Field, and San Diego. Kellisa only added one to her total- Columbus.

Saturday, December 9, 2017


A Mother and Daughter's
Peakbagging Adventure

Patricia Ellis Herr

I spent 10 hours on 4 flights this past week and I was able to finish another great read, Up by Patricia Ellis Herr. 

The book shares the story of a mother who takes her very young mountain climbing daughter on an adventure few adults achieve. The goal was to hike and climb the 48 tallest peaks in New Hampshire, including Mount Washington- home to some of the worst weather and strongest winds in the world.

Patricia has to balance many things as the mother of a 5-year-old adventurer, including safety, risks, equipment, and nay-sayers. The author has to defend their outdoor activities because too many assume that the parent is just dragging her child along for their own selfish reasons.

I can relate because many look at what I do with the girls, especially Kellisa, and assume that I am forcing her to be out on the trails. Anyone who spends time with Kellisa on the trail will know her giggles, laughter, and never ending asking for "more" proves the exact opposite- it's actually Kellisa dragging me along for her ride. 

The mother-daughter team is not afraid to go at their own pace and even turn around with a summit in view when it is no longer safe to ascend. Patricia shares many struggles, both physical and emotional as she describes their unique peakbagging challenges and experiences. Up is an inspiration on the importance of spending time with your children in the great outdoors, even if it's not a monumental undertaking like climbing 48 mountains higher than 4,000ft. in New Hampshire. 

Up can be purchased here.

Friday, December 1, 2017

I'll Push You

A Journey of 500 Miles

Two Best Friends, and One Wheelchair

Patrick Gray and Justin Skeesuck

It's been awhile since we did a book review on Kellisa's Path, but after recently reading, I'll Push You, we couldn't resist sharing this book. At the heart of this book is a love story, not a boy meets girl or father-daughter love story, but the love between two life long best friends.

Patrick and Justin grow up together as inseparable best friends always up for an adventure. They serve as the best man for each other's weddings and even vacation together with their brides.

Like so many families, Justin's life is interrupted by a debilitating disease which eventually leaves him confined to a wheelchair in need of constant care. Instead of accepting his fate and merely existing, Justin is determined to set an example of how to live. He could have picked an "easy" challenge, but that is not his nature. He decides he wants to hike the famous Camino de Santiago trail stretching 500-miles over mostly difficult terrain in Spain.

Unable to hike this trail alone, Patrick immediately volunteers to push Justin and they start planning. The first order of business is to find a wheelchair up for the hike and to start training. Along the way, they have the opportunity to have the hike filmed for a documentary and many other people offer their help in varying capacities.

The Camino de Santiago should be impossible for Justin and Patrick, but with their love, dedication, determination, and the help from other hikers along the way, they are able to complete this challenge proving that the impossible is very possible!

It is nice to see and read about others hitting the trails on wheels and pushing beyond known limits. I'll Push You can be ordered here.

Sunday, November 26, 2017

Sierra Discovery Trail

 Tahoe National Forest
November 2017

We've been wanting to hike the Sierra Discovery Trail for awhile because it's only one hour from our home and it is listed as fully accessible. The trail has a little bit of everything, a boardwalk, bridge, large pine trees, rolling terrain, interpretive signs, and views of several waterfalls. Because every source I could find describes the trail as accessible, I decided to bring Kellisa's everyday therapeutic wheelchair instead of one of her mobility chairs made for trails. One guide book suggested that help may be necessary to get a wheelchair around the entire loop trail.

We found the trail to be as described, but since it was late November, the trail was littered with large pine cones and broken branches. With Kellisa's small front tires, the wheelchair would come to an immediate stop every time they came into contact with these little obstacles. If we were going at a good pace, the back wheels would lift from the sudden stop as the chair lurched forward. While this process jammed my wrists to the point of pain, Kellisa thought the repeated jarring was hilarious and wanted more. 

It was a low risk, but I hiked at a slow and careful pace because I didn't want to flip the chair with Kellisa landing on her face. This happened once years ago at recess at school (scary pictures). 

Thursday, November 16, 2017

Swimming in the Wintertime

Grover Hot Springs State Park

October 2017

Laurel was asking to go swimming and camping in one trip. With the cooler autumn weather, I was worried it was too late in the season to do both without a hotel stay. After a quick search on the Internet, I found Grover Hot Springs State Park

The park had a large pool that was the temperature of a hot tub while also having a swimming pool kept at "cool" 88 degrees and the park was only 2 hours from our house in the Sierra Nevada Mountains. 

We left after work and arrived shortly before nightfall. The campground was closed for winter, but the park allows camping in the picnic area. It was hard to find a level spot, so we picked the least inclined spot we could.

While I setup our camp, Laurel made some new friends and shared her slime with them. When we were both done, I was ready to cook dinner and retreat inside our tent for the night. Laurel had other plans, she was ready to go swimming. I was hesitant because it was now dark and also starting to get cold. We had about an hour to spend in the hot springs before they closed at 9pm and it was a glorious hour spent soaking under the nighttime sky filled with stars. When it was time to leave, we dried off, changed our clothes, and drove back to the campsite. We used the few minutes in the car to warm up the rest of the way.

Tuesday, November 14, 2017

Ramblr App Test Walks

Miners Ravine 
Roseville, CA

September 2017

Test Walk 1: We've been using Garmin products for years to track our walks and hikes. I read a few reviews about Ramblr and decided to download it to my phone. It's a lot more user friendly and I like the way it marks the location of where pictures are taken. Kellisa and I went for a short walk on our home path, the Miners Ravine Trail in Roseville, CA to try Ramblr. My first impressions are positive, I just need to learn all the features and benefits and how to easily share the map of the route walked/hiked. We look forward to trying Ramblr on a wilderness trail. 

Tuesday, October 31, 2017

Great American Eclipse

August 21, 2017
Weiser, Idaho 

The road to Weiser, Idaho to witness the Great American Eclipse was a lot longer than the 1,144 miles we drove round trip. By the time (early 2017) we realized that we lived a day's drive from totality, all the hotels were booked. We considered hotels close to totality, but gridlock was predicted on all the roads leading to totality for the 24 hours before the event. We didn't want to risk being stuck on the road close to the path.

The next plan was to book a campsite somewhere in Oregon in totality, but these were also completely booked. Since hotels that were only close started at $500 a night with a 3 night eclipse minimum, I booked a campsite as close as I could and we would just have to hope and plan to leave in the middle of the night to reach the path in time. With a campsite in our back pocket, I frequently checked hotel websites hoping for a cancelation somewhere in the path. I even looked at airfare to farther places, still in the path, but every flight was completely sold out. People would be traveling from around the world to witness this amazing event.

Tuesday, October 24, 2017

Independence Trail West

Click on picture for larger version

South Yuba River State Park
Nevada County, CA 

June 2017

Distance: 3.14 miles
Rating: 2
Type: Out & Back.
Elevation: Almost level.
Surface: Dirt & Wooden Flumes.
Nearest City: Nevada City, CA
Location: Just over 6 miles from Nevada City on Highway 49 North.
Parking: 1 disabled spot.
Bathroom: At trailhead.
Water: Bring your own.

The Independence West Trail is recognized as the first Wilderness Trail in the country for all abilities. We were surprised that it took us a year before we realized that we lived less than 50 miles from this historic trail. Once known, we were at the trailhead in less than a week. It was nice to find a disabled parking spot adjacent to the trailhead. Despite being along the highway, we had more than enough room to unload the chair and safely transfer Kellisa.

The trail was created from the old Excelsior Ditch high above the Yuba River. The path hugs the hillside high about the South Yuba River as it crosses several restored wooden flumes. Instinct told us to pushike inside the ditch instead of above on the miner’s access trail. This would prove to be the easier and safer route to pushike.

Thursday, October 19, 2017

Hoh Rain Forest

Olympic National Park

August 2017

The drive was long, very long from Bremerton, Washington to the Hoh Rain Forest of Olympic National Park, but it was a beautiful drive.

After checking out the visitor center, we didn't let a "No Wheeled Devices" sign stop us from enjoying a short trail through the forest with several bridges over amazingly clear water with baby salmon swimming.

On our return drive, we made a side trip up Hurricane Ridge. It was a little too late for a hike and the visitor center was closed, but we did have a perfect viewing spot as the moon rose for the evening.

Olympic was Laurel's 23rd and Kellisa's 29th national park visited.

Wednesday, October 18, 2017

Ride Rainier 2017

July 2017

Mount Rainier National Park

Kellisa loves being outside and on a trail, but she is always the only one on wheels. We've been known to fly and/or drive crazy distances for the right trail. Therefore, it was a no brainer to drive up to Mount Rainier National Park for a hike with other wheelchair users once we found out about the Ride Rainier 2017 event from a FB friend. 

Kellisa always lights up when we are getting ready to start a hike. It usually takes some time at the trailhead to get everything just right and Kellisa sits there with a huge smile and will let out an occasional giggle as she waits to start a new adventure. Her pre-hike excitement lit her up several notches that I didn't even know she had once she saw many other hikers at our trailhead who were also in wheelchairs. She was with her "peeps" and she knew it. Besides the extra excitement, I could see Kellisa also felt a sense of belonging as she was clearly more confident, verbal, and out going during the entire hike.

We are so thankful for the opportunity to share this experience with others on wheels (and their friends and family too) and hope to join our new friends on future hikes!

And for those keeping track, Mount Rainier National Park was Laurel's 22nd and Kellisa's 28th national park visited.

Sunday, October 15, 2017

Crater Lake National Park

July 2017

We spent an afternoon exploring Crater Lake National Park. It was Laurel's first and Kellisa's second visit to this beautiful national park. We spent a week at Crater Lake back in 2009. With this visit, Laurel has now visited 21 national parks and Kellisa's total remains at 27. 

Sunday, August 27, 2017

Colusa County Hike

Wetlands Discovery Trail
Colusa National Wildlife Refuge

May 2017

Even though it was a little hot out, we drove south for another hike after visiting Sacramento National Wildlife Refuge. Our second hike of the day was a short trail in Colusa National Wildlife Refuge which happens to be in Colusa County. 

Before hiking, we drove the auto tour to observe just a few birds (disappointing) and a couple of glimpses of Sutter Buttes, the smallest mountain range in the world.

Sunday, June 11, 2017

Glenn County Hike

Wetlands Walk Trail
Sacramento National Wildlife Refuge

May 2017

CA Counties Hiked in 2017: 4/58

Lisa was in Chicago for a long weekend visiting family, so we decided to drive north a little ways to look for wildlife and hike a few trails. Our first stop was the Sacramento National Wildlife Refuge. After driving the auto tour to observe many birds, we hiked part of the Wetlands Walk Trail. It was very hot for a May afternoon and the views played tricks on our minds as we could see snow capped mountains not that far off to the north and west. 

Thursday, June 1, 2017

Hiking California Counties- May Update

O'Neill Regional Park- Orange County
May 2017 was all about Kellisa's 18th birthday, from her cross country "day of flight"  to posts summarizing her first 18 years. It's also a chaotic time of the year as school for the girls winds down with talent shows, dances, and other end of year festivities. In the middle of all that, Lisa flew back to Chicago to spend a couple of days with family. 

While Lisa was away, we managed to hike in two new Sacramento Valley counties in Northern California bringing our total to 5 counties hiked in 2017. We ended May with a Memorial Day weekend trip to Southern California to visit family. I was hoping to hike in at least 2, if not 3 counties on the trip, but Laurel wasn't feeling well when we attempted to hike a trail in Orange County and waited in the car with Lisa. We did not attempt any other county hikes and Laurel has been a little down on the idea of hiking lately. Not sure what that means, but it may add a challenge, if not a change to our 2017 goals. Full posts with pictures from the Sacramento Valley coming soon.

Wednesday, May 24, 2017

Yesterday and Today

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. 

Tuesday, May 23, 2017

Kellisa Reaches 18

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 for her birthday.

Lisa's words:

On May 16th, 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

A Promise Fulfilled (2016)

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!

Friday, May 19, 2017

Sweet 16 (2015)

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

Forever Sisters (2014)

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

"Sometimes My Dad Forgets Me" (2013)

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

Kellisa's 18th Birthday Tour on Southwest Airlines

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 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

5 Years? (2012)

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 a
few 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

"Where Can I Find A Hammer?" (Autumn 2010)

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 came true!

Friday, May 12, 2017

Evanescent (Spring/Summer 2010)

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

Thriving Spirit (2009)

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

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.

Tuesday, May 9, 2017

A Year Without A Surgery (2007)


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.

Monday, May 8, 2017

Finding Adventure (2006)

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

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.  

Friday, May 5, 2017

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.

Thursday, May 4, 2017

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.

Wednesday, May 3, 2017

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. 

Tuesday, May 2, 2017

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.

Monday, May 1, 2017

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!

Anything is Possible!

May 2017 is a VERY BIG DEAL!!!

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.