Campbell Hill

Kellisa's 4th State Highpoint:

Campbell Hill, Ohio

1,547ft.

May 2006

Campbell Hill was our second Highpoint of the day after stopping at Hoosier Hill in neighboring Indiana. It was another easy summit with a drive-up and short walk along a sidewalk. We were in Ohio to celebrate Kellisa's Uncle Jim's 50th Birthday Party:

 Our gift: Older than Dirt t-shirt

Kellisa enjoying the party in the above two pictures. Kellisa has short hair because she had her head shaved for a shunt revision surgery 6 months earlier in December 2005. Kellisa had a shunt for 2 1/2 years without any issues before she started having some swelling behind her ear over the shunt's tubing. In October 2005, Kellisa had surgery to replace just the tubing. As she healed from the surgery, the swelling returned. In November 2005, the neurosurgeon replaced the tubing a second time. Since the swelling continued for no apparent reason, the doctor decided to remove the shunt and change the location of the new shunt and tubing with a surgery in December 2005. Because the shunt was moved to an area just above her forehead with the tube running along her hairline, back around the left ear and down the neck to the stomach, the doctor had to shave her entire head.

Kellisa had another Bilateral VDRO surgery in January 2006. It would be her 4th surgery in as many months and 19th to date. It was another 6 weeks of constant pain and suffering during the recovery period. You would never know it from Kellisa's face just a couple of months later. 



Hoosier Hill

Kellisa's 3rd State Highpoint:

Hoosier Hill, Indiana

1,257ft.

May 2006

Hoosier Hill was uneventful, just a long drive to a small forested area in the middle of nowhere, Indiana. I carried Kellisa along the short path from the parking area to the summit. We flew into Indianapolis and made the detour to summit Kellisa's third Highpoint on our way to Ohio.

Britton Hill

Kellisa's 2nd State Highpoint:

Britton Hill, Florida

345ft.

November 2004

We stopped at Lakewood Park, home to Florida's Highpoint- Britton Hill, on our drive home from visiting the Buckingham's for a Thanksgiving feast in Texas. It was about a 2 1/2 hour detour for Kellisa to reach her second state highpoint. It's probably the easiest of the 50 highpoints to reach with a drive up and short paved path to the actual top of Florida. I just carried Kellisa to the granite marker for the customary "summit" photos above.

In the the 18 months before visiting Britton Hill, Kellisa continued down her rough medical path following her shunt infection of Spring 2003. Unable to drink and eat enough to stay adequately hydrated and maintain a healthy weight, Kellisa had a g-tube surgically placed in her stomach in June 2003. This would allow fluids, including prescription formula and medicine, to be directly inserted into her stomach. It's suppose to be an easy, routine surgery with only a 1% chance of complications. Never one to venture beyond the 1%, Kellisa's body was rejecting the g-tube by pushing it our of her stomach. Following a month of "nursing" the g-tube, Kellisa had a follow-up surgery to remove and replace the original  g-tube with another. Again, true to her nature, Kellisa continued down the 1% path after the second surgery. She suffered from granulation tissue growing out of the hole in her stomach. Kellisa had to visit the doctor to have the granulation tissue burned off several times a month. It finally got to the point where the doctor sent us home with silver nitrate to burn the granulation tissue ourselves as necessary to avoid the constant doctor appointments. Kellisa would need to be held down by one person while the other burned the tissue. After many months, the granulation tissue eventually stopped growing and Kellisa was beyond the g-tube surgeries.

In September 2003, Kellisa had Bilateral VDRO surgery. This would be her 13th surgery to date and by far the most painful and difficult to manage as parents. Because Kellisa wasn't bearing consistent weight on her legs, her hip socket did not grow around the ball of her hip. This eventually caused constant pain because her hips were dislocated and were moving freely. The surgery consisted of placing hardware in her leg bones and removing a section of bone in both legs to help force the hips into place with the hope of the socket developing to the point were the hips wouldn't be dislocated.

Kellisa was in constant pain and discomfort for 6 weeks despite being on strong pain killers that were dispensed every 4 hours. To make things worse, Kellisa suffered from leg spasms which would intensify the pain. We set up a mattress in front of the television in our living room as a place for Kellisa to attempt to sleep during the night. She would moan and cry most of the night from the pain. We thought the TV might help her fall asleep and if not, she could watch the Disney Channel. We took turns sleeping on the couch above Kellisa to be in position to comfort her when she would cry out. This would also allow the other parent to try and get a decent night of sleep. However, her cries would awaken us no matter where we slept in the house.

Kellisa was diagnosed with acid reflux in January 2004. Add another daily medication to her growing pill box. Everything would be quiet for several months before Kellisa had another surgery, this time a 2 for 1: Tonsillectomy and Adenoidectomy because of sleep apnea in August 2004. The surgeon would remove the tonsils and adenoids with a laser. To every one's amazement, one of Kellisa's tonsils would grow back even bigger than they were originally. The doctors have said that this is as close to impossible as you can get. We've even had doctors ask "what is that on her throat?". Some have even had to look for themselves because they've never heard of tonsils growing back after laser surgery.

Brasstown Bald

Kellisa's 1st State Highpoint:

Brasstown Bald, Georgia

4,784ft.

May 2004

Brasstown Bald- we arrived just a few minutes before the summit area closed. Normally, the summit is reached by gaining 400 feet along a 1/2 mile path. The park does provide a shuttle to those with disabilities. No one was around and knowing this was our chance to reach the actual highpoint on this trip, I decided to drive up the road reserved for the shuttle. After I parked, I hung Kellisa's disabled parking card from the mirror in the hopes of not getting locked in for the night and for good measure in case of a ranger encounter.

I carried Kellisa to the highpoint which wasn't far and we took the pictures above before quickly returning to the van where a park ranger was waiting. She was not happy as she lectured us on the park rules we were violating. I don't think she believed Kellisa was really disabled because I left her wheelchair in the van. With a strong warning, we left following the success of Kellisa reaching her first state Highpoint.

Before stopping at Brasstown Bald, we stopped at Amicalola Falls State Park. For most people, the 729 foot cascades (highest in the Southeast) that give the park it's name is the main attraction. Also, Appalachian Trail (AT) Thru-Hikers know this park because of the connecting trail to the southern most point of the AT. The reason for our visit was the West Ridge Falls Access Falls Trail that is wheelchair accessible. It would be our first hike while pushing Kellisa, even if it was an easy trail that was accessible. We were outside and would get to view a beautiful waterfall.

I wasn't satisfied after the short accessible trail. While Kellisa had an awesome wheelchair at the time, it was anything but trail worthy. My passion for adventure had been awakened after a 5+ year hibernation. I decided to try a "real" trail with Kellisa. It would be steep, muddy, rocky, scary and fun! Looking back, it was one of the dumbest things I've ever done with Kellisa, but at the same time one of the most important. With people looking at us like I was crazy, it took everything I had to get Kellisa up the trail to a better viewpoint of the falls. This was the day I realized I could share my love of the outdoors with Kellisa.

On our way home from Brasstown Bald, we stopped for a short visit at Tallulah Gorge State Park. The gorge is nearly 2 miles long and 800 feet deep. We were pleasantly surprised to find a paved trail to several outlooks for easy viewing of the gorge. 

                                                             Tallulah Gorge:

                                  

                                   

Kellisa had just turned five the week before this trip and had already endured 13 operations, including 7 brain surgeries. The 14th (feeding tube) was scheduled less than a week after we would return from this mini-vacation. Needless to say, we didn't have the time or opportunity to pursue outdoor adventures.

The previous year had been a particularly rough year for Kellisa. Only her first year of life could rival her medical issues suffered during 2003. Kellisa started having a high fever in early March and was suffering from dehydration and lethargy. We were seeing several doctors every week and Kellisa was admitted into the hospital on the 12th for a three day stay. The doctors were struggling to determine a definite cause for Kellisa's illness. The fever would end up lasting over a month. The doctors thought it was just a persistent cold/flu since it was the right season and Kellisa didn't have a healthy baseline to begin with. It was our strong belief that something was wrong with Kellisa's shunt, mainly because it had been replaced four times since the original surgery and we knew the signs. After a CAT scan, we were told that the shunt was functioning properly.

Because of our persistence, the doctors were testing and checking all the possible causes off their lists when they came to HIV/AIDS. Normally, we wouldn't have been concerned, but Kellisa had received several blood transfusions to keep her alive while in the Neonatal Intensive Care Unit.  Kellisa was near death and no one could figure out why and the doctors were testing for HIV/AIDS.

While Kellisa lay in her hospital bed almost lifeless, Lisa was flicking through the channels on the TV. As Lisa paused on the Disney Channel, Kellisa immediately showed some life as she perked up a little. A show called The Wiggles was on. We had never heard of The Wiggles, but this was the first signs of life from Kellisa in several weeks. From this moment on, Kellisa would get excited every time The Wiggles came on and we started purchasing their DVDs. We sincerely believe that The Wiggles played a significant role in saving Kellisa's life back in 2003. At the very least, they gave her enjoyment in her darkest times. For this, we will forever be indebted to The Wiggles!

Until now, the school picture below has never been shared and her sickly image is just as disturbing today as it was seven years ago. The picture was taken on March 27, 2003: 

Fortunately, the HIV/AIDS testing came back negative. However, Kellisa was still fighting to survive on April 9th when we took her back to the hospital. We refused to leave until they tapped her shunt. We were told that it was impossible for the shunt to be infected because it had been in place for two years and the CAT scan looked perfect. The neurosurgeon eventually gave in and tapped the shunt. Satisfied, we left for home. We already had a message from the hospital with the results when we arrived at home less than an hour later. The shunt was grossly infected and they were scheduling the surgery for the following morning.

For many reasons, including the fact that Kellisa's neurosurgeon was close to retirement and she had been sick for so long without proper diagnosis, we were not comfortable with having the surgery performed in Jacksonville. Before we moved to Jacksonville, Kellisa had a great neurosurgeon in Orlando, FL. We decided to drive down to Orlando and have Kellisa admitted to Arnold Palmer Hospital. At first, the neurosurgeon was reluctant to accept Kellisa out of professional courtesy to the Jacksonville doctor. We pleaded our case and he eventually decided to review Kellisa's case.

We were asleep in Kellisa's hospital room when the doctor woke us up at 4:30am. He had been up all night performing emergency surgeries before he could review Kellisa's case. Knowing that he placed the shunt back in May 2001 and the CAT scan looked perfect, he believed that it was so unlikely that the shunt was infected that he doubted the test results. He wanted to tap the shunt himself which he proceeded to do in the hospital room. The infection was confirmed and they were taking Kellisa at 6:30am for her emergency brain surgery.

Kellisa's shunt and tubing had to be completely removed from her body before a temporary shunt could be placed. This shunt would be external and the excess Cerebrospinal Fluid would be collected outside the body and frequently tested for infection. After the surgery, Kellisa was on strong antibiotics to kill the infection. We were advised that it could take a week or even a month before the infection was completely gone from her body.

Kellisa would remain in the hospital until a permanent shunt could be placed. But this surgery couldn't happen until the infection was gone. It took only seven days to wipe out the infection that almost killed her. Kellisa would have another surgery on April 18th to remove the temporary shunt and replace it with a permanent programmable shunt.

This surgery would be one of the hardest on us as parents even though Kellisa was past the worst of her sickness and it was our 10th surgery with Kellisa. We were told that the surgery would last about three hours. Lisa and I had a normal routine that we followed after every operation. Once Kellisa was wheeled away towards the operating room, we would go to the hospital cafeteria and have a meal while discussing something positive before returning to the waiting room where we would let the nerves settle in as we tried to read a book or magazine. The nurse called about an hour in the surgery to give us an update that everything was going as planned. Two hours went by and then three, three and a half and still nothing. We were out of our minds with nervousness as four hours passed without an update. The volunteer lady at the desk couldn't help us.

Finally, at four and a half hours, another neurosurgeon in the same practice came out to give us an update. He apologized for the delay and told us that everything went OK and Kellisa was waiting for us in recovery. He would go on to explain that three kids were involved in a serious car accident and all three needed emergency brain surgeries. The kids were admitted while Kellisa was in surgery and the doctors and nurses had to immediately attend to the other kids following Kellisa's operation. We were relieved and understood why we were kept waiting. I couldn't help but have thoughts of losing Kellisa during the wait and those thoughts still haunt me today. 

Kellisa came out of the surgery and was back to her usual self in no time. We will forever be indebted to Dr. Pattisapu for saving Kellisa. Because it was a new shunt, we still had to worry about the body rejecting the hardware and tubes. There was also the possibility of another shunt infection during the first year following the placement. The shunt would last until October 2005.

                                                                    

TSA Incident #1

Baltimore/Washington International Airport

BWI

August 2, 2010 

Kellisa and I were flying home from Baltimore after a quick weekend trip to bag three highpoints when I came close to getting arrested by TSA government employees at the airport. Why close? Because Lisa did not make this trip with us and I barely showed restraint at the last second out of concern for Kellisa.

Here's what happened: Most airports have a line for flight crews and wheelchairs. Not Baltimore's airport. OK, so we zigzag through the long line like everyone else without a complaint. After 15 minutes, we are probably halfway through the line. All of a sudden from behind, two airport workers are making their way through the zigzags pushing two people in airport wheelchairs. As they pass us, I follow them to the front of the line...assuming this is the "wheelchair procedure" in Baltimore.

I was wrong. TSA workers allowed the two wheelchairs to go directly to the front, but stopped Kellisa. I was told to take Kellisa and go back to the end of the line. I explained that I didn't understand the process. I was told that the other wheelchairs were escorted by airport workers and since Kellisa did not have this "escort", we would not be allowed to move to the front of the line. I tried to reason by explaining that Kellisa could not walk at all and out of the three wheelchairs, Kellisa's was the only "real" wheelchair.

While we are having this "discussion", the guy in the first wheelchair gets up, walks through the metal detector and starts gathering his bags, all while standing. I wasn't ready to explode, but my temperature was rising fast. Then I look over at the other line and see the little girl in the other wheelchair getting up and actually running through the metal detector. The TSA workers made her go back and asked her to walk slowly through the metal detector for a second time.

I was done talking and began yelling at the TSA workers. I pointed to the guy as he was still standing holding three bags without any assistance while he waited for his wife. He looked at me and then acted like he couldn't hear me as he started to walk away. Yes, walk away without his airport wheelchair and escort while holding three bags.

Then I pointed to the mother of the running daughter and accused her of having her daughter fake a disability just to get through the line faster. I told her I would apologize if she told me what caused her daughter to need an airport wheelchair while allowing her to run through the metal detectors. The mother turned away, dropped her head and proceeded through the metal detectors. Her daughter was probably 5 or 6 and unaware of what was happening because she was doing a little dance next to the wheelchair before running towards the gates while leaving her chair and escort behind. I told the mother and the man that I'd love to talk to them once they let us through security.

At this point, I was being surrounded by additional TSA workers who were all talking into their little radios. Several had guns drawn and a couple grabbed my arms. Kellisa had been giggling with all the attention, but at this point, she became visibly scared and nervous. I believe she could sense the situation becoming very serious for us. Looking at Kellisa's face, I actually settled down a little. I realized that I probably made a threat and I couldn't afford to get arrested because I didn't have anyone who could watch Kellisa.

During this moment of calm, the TSA supervisor approached through the crowd that was now gathered around us. She asked if I was OK and explained that the airport's policy was to let all escorted wheelchairs proceed to the front of the line without questioning if the people were disabled or not. I assume she was listening to the entire incident and possibly even watched the beginning on a monitor in a back room somewhere. Before I could argue my point, she offered to let us go through the metal detectors without going to the back of the line if I agreed not to continue the incident with the mother/daughter or the other guy. In hind's sight, I'm thankful that I agreed to her reasonable offer. We made it past security without further incident.

I'll admit to looking for the disability fakers as I pushed Kellisa through the terminal to our gate. I didn't see them. I would have liked to give them something specific to think about while hoping it would prevent them from ever faking a disability again.

To the man, I would have said, "I bet you wouldn't last a day in real wheelchair" and "what you are doing is like stealing a benefit granted to people with disabilities and it's a small concession when you are really disabled".

To the mother, I would have said, "do you realize what you are teaching your daughter" and "you should be thankful every day that your daughter can run through an airport because kids like Kellisa will never be able to even walk".

TGIF Dance and Nighttime Baseball

September 30, 2011

 

After school and before baseball, Kellisa attended a TGIF Dance at her school and had a blast:



Kellisa went straight from the dance to her baseball game. Kellisa had to change into her Marlins uniform in the back of the van. The city installed lights over the summer and this was the first night game ever for the Jacksonville Miracle League. Still pumped from the earlier dancing, Kellisa wheeled around the bases in record time on her second at bat of the evening. This earned Kellisa one of the two MVP awards after the game.

Grand Island National Recreation Area

Grand Island National Recreation Area

Michigan

September 2011

The idea for a backpacking trip on Grand Island formed when I read an article about a trail race held on Grand Island. From the pictures and race descriptions, I knew the trails would be ideal for pushing Kellisa. The highlights include hiking on top of 300 foot high sandstone cliffs with long ranging views over Lake Superior, long sandy beaches, deep North Woods and two inland lakes. Grand Island is a primitive wilderness about a 1/2 mile from the mainland of the Upper Peninsula of Michigan. The island has abundant wildlife, including a healthy black bear population. 

The remoteness of the island and the black bears had me a little nervous to hike and camp alone with Kellisa. I invited our cousin Matt to join us on this adventure to the far north of America. He gladly accepted and it helped to make up for a cancelled trip we had planned for the summer. We were scheduled to do some hiking and camping in Colorado with Matt, but had to cancel because Kellisa had two surgeries over the summer followed by some complications that required weekly visits to the doctor. The doctor did not like the idea of Kellisa being far from a hospital while we were dealing with the post surgery issues. Trusting the doctor, it was an easy decision to cancel the trip. However, it was still difficult to think an entire summer would pass without an adventure.

Kellisa was finally cleared to travel and I scrambled to book a trip to Grand Island. I originally wanted to spend 4 days and 3 nights on the island. Due to Kellisa's school schedule, we had to settle for 2 half days and 1 night. Our basic philosophy was a short trip was better than no trip.

The day before our trip to the island was filled with rain and high winds. Below, Grand Island from the mainland:

A pontoon boat ferries visitors to Grand Island and runs on a published schedule of three round trips daily for the days we would need the service. We planned on taking the noon ferry to the island. Matt and I don't wear watches and were trusting the clock in the rental car. We lost track of the fact that we rented the car in Minneapolis in the Central Time Zone and Michigan is in the Eastern Time Zone. Matt realized our error in time and we had to race to catch the ferry. As we pulled into the parking lot, we could see the ferry already departed for the island. The next ferry wasn't until 3pm. Since we already had a short trip planned for the island, the thought of losing three hours was difficult. I ran inside the office to plead our case and I was assured that the ferry would return in a few minutes and would take us to the island, but we had to be ready. 

  Being ready quickly is not easy with Kellisa. Especially since we camped the night before at Bay Furnace campground and didn't really organize our gear because of the rush to catch the ferry. Matt and I just started throwing gear out of the car and loading it into our backpacks. I got Kellisa's chair ready and made a last check for diapers, tube feeding supplies and her medicine. I figured we could survive 24 hours on the island as long as we had Kellisa's basic needs met. We did pretty well and I think the only thing we forgot were a few water bottles.

Kellisa enjoying the boat ride to Grand Island:

Traditional photo:

Relieved to finally be on the island, we took a few minutes to organize and settle our packs for the upcoming hike. Our goal was a campsite approximately four miles from the dock. Not a great distance, but we wanted to take some time to sight see along the trails. Also, you can't reserve the campsites, so you could find them taken upon arrival causing you to continue until you found a vacant campsite. Matt spotted an eagle as soon as we started on the trail. We were hoping that was the start of some great wildlife viewing opportunities.  

I could not ask for more perfect trails (wide and free from large rocks and roots) to hike with Kellisa:

After 3.8 miles, our campsite of choice was vacant:

Kellisa and I would share a tent:

Matt would build a primitive shelter (Survivorman style):

Enjoying a campfire in the early evening:

Matt returning from securing our food in the bear locker (green box just to the right of Matt's head):

Matt emerging from his shelter:

Inside Matt's shelter:

Matt returning with filtered Lake Superior water:

Campsite panorama (tent, fire ring, GAWK, and almost hidden on the far right, Matt's shelter):

Kellisa enjoying her time at the campsite:

The beauty of an Ipod, Kellisa was able to listen to Hannah Montana:

Feeding tubes and medicine in the backcountry:

Decent facilities were provided at the campsite, at least compared to digging a hole and burying it:

Hiking to Echo Lake after setting up our camp:

Echo Lake:

Island Scenery:

We caught the noon ferry the next day. Thankfully, it was completely accessible:

Kellisa enjoying the boat ride back to the mainland:

The trip was short and a complete success. Unfortunately, we did not see or hear any bears while on the island. Did they see and hear us? Probably. We would leave with a small taste of what the island has to offer and I was already thinking about a return trip before we even left the island.

Spending time with Matt allowed us to discuss adventures that would be possible to accomplish with Kellisa. I won't mention our ideas at this time, but I can say that I believe Kellisa would be the first person pushed to some of the places on our list.

I saved the best part of the trip for last. Kellisa's teacher gave me a list of words to work with Kellisa while on our trip. It was a coincidence that the list included the words: small, town, big and lake. We spent most of our time within view of one of the biggest lakes in the world and drove through countless small towns to and from the big lake. The teacher was working with Kellisa to identify these words by sight when presented to her. I took it a step further and wanted Kellisa to learn how to say the words in addition to just recognizing the words.

Kellisa learned to say all the words while on our trip. I video taped several sessions of Kellisa talking to send to school to show the teacher what Kellisa learned. Hopefully, the school will now push Kellisa because my videos clearly show her vocal potential. However, I do worry that Kellisa won't perform on our next trip due to the fear of being worked hard at school when I teach her new things. In a few days, we accomplished what would normally take several months in speech therapy, if ever. My success at getting Kellisa to say new words left me with a few questions I need to have answered: Was it the magical location of Lake Superior and the North Woods? Wanting to impress dad and Matt? Something else? All I know is that we triggered something inside Kellisa's complicated brain and we need to continue down this "out of the school" educational path.  

Photos 3-4-5-6-7-20-22-23-24-27 taken by Matt. All others from the Hurrikains collection.