Grayson Highlands State Park

Grayson Highlands State Park

Virginia

June 2006

Kellisa and I went on our third father-daughter camping trip and first beyond Florida in June 2006. We went to Grayson Highlands State Park in Virginia for a week of camping and hiking. Although we weren't able to summit the highpoint of Virginia, we did enjoy several nice hikes, including a trail to the top of Little Pinnacle.

We were camping deep in the mountains and the rangers locked the gate to the campground at night. Cell phones do not work in Grayson Highlands. In other words, we were experiencing perfect solitude. However, I couldn't relax completely because I was worried Kellisa would have a seizure far from medical services.

Our 3rd night of camping was interrupted by rain storms that included strong wind gusts. It was hard for me to sleep as I was worried about trees falling on our tent.

Kellisa was sleeping through the storm as I continued to struggled. Then, one of my fears was realized. Kellisa started to have a seizure. I wasn't comfortable with Kellisa's seizures at this point and would always over worry since her typical seizure would only last 45-60 seconds. We've been instructed to call 911 if a seizure lasts 5 minutes. I quickly sat up, turned on a light and started timing the seizure. 30 seconds, then 45. I was hoping she would pop out and it would be just a normal seizure and we could go back to bed. 1 minute, 2 minutes, 3 minutes, it seemed like hours. Then 4 minutes and I still had no idea what I was going to do if we reached 5 minutes. An eternity later the seizure hit 4 1/2 minutes and I was frozen with panic and it felt like my head was removed from my body as I couldn't believe this was happening. As suddenly as the seizure started, it stopped just before hitting 5 minutes. I was never more relieved as when I saw Kellisa's partially paralyzed face looking up at me with blue lips and glassed eyes with a half smile as the other half of her mouth sagged from being paralyzed. This was her look when she came out of a seizure. We snuggled and Kellisa quickly fell asleep as I tried my best to get a little rest with what was left of the night.

Sadly, the month after our trip, a 6 year old girl died in a tent while camping at Nelson Dewey State Park in Wisconsin. As a kid, my dad took me on a couple of camping trips to Nelson Dewey State Park.

To this day (1.5.12), this seizure ranks in the top 5 most terrifying incidents in my life.

We used Grayson Highlands as a base for our day trip to Black Mountain, the highpoint in Kentucky. I was too scared after the seizure to camp the remaining two nights and cut our trip short. Because of this decision, we had an extra day and were able to reach Mount Mitchell, the highest point east of the Mississippi River on our drive back home.

I have since reached the summit of Mount Rogers three times as I continue to search for a route that I can use to get Kellisa to the top of Virginia.

Black Mountain

Kellisa's 5th State Highpoint

Black Mountain, Kentucky

4,145ft.

June 2006



Black Mountain is located deep in coal mine country. In fact, coal mining is done on the upper portions of Black Mountain. Because a coal mining company owns the summit, a waiver needs to be completed and returned prior to your visit. You will be signing away all rights, yours and surviving family members if anything happens to you on Black Mountain.

The day Kellisa and I visited, the mountain was trapped in the clouds which made the long, winding mountain roads slower than normal. A guidebook is essential because the summit and it's turnoff are not marked by a sign on the highway. The correct road leads toward the "FAA En Route Radar". Shortly after the radar station the road turns to dirt and it can usually be followed directly to the summit area. However, a gate blocked the road on our visit and we had to hike the short distance to the actual highpoint. Kellisa was still small enough for a store bought jog stroller and I was able to tip it back as we went under the gate. We continued up the muddy road for a short distance before arriving at Kellisa's 5th state highpoint.

Disabled visitors should plan for the gate to be locked and have a plan B. If I can't tip Kellisa in her chair under a gate, I usually set her on the ground while I struggle to get her chair/stroller to the other side. Preferably, I can get it under or around and lifting it over the gate is the last option. I then pull Kellisa under the gate as she normally laughs at my struggles before lifting her back in her seat. Disabled adults may require two people to help. I would also recommend a tarp to set on the ground in case it's wet like our day on Black Mountain.

 Highway near Black Mountain

 Narrow road leading to the summit area

 The road beyond the "normally" unlocked gate to the summit

 Kellisa at the summit

Father/daughter at the summit

Building and towers on the summit

Southwest Airlines Customer Service

Thursday, November 24, 2011

Flight: 2890

Depart Jacksonville at 1:10pm

Arrive Baltimore at 3:00pm

Flight: 270

Depart Baltimore at 3:50pm

Arrive Pittsburgh at 4:50pm 

A 50 minute connection between flights is pushing it when you are traveling with a wheelchair. We usually pick non-stop flights or itineraries with longer layovers, but since this was Thanksgiving and we booked only 9 days earlier, this was our best option. We made it through security without any issues or the bomb squad being called. The plane was boarded, the door closed and the plane started to back up for an on time departure. Just beyond the gate, the plane came to a stop for approximately 5 minutes before returning to the gate. The flight attendants immediately opened the door. I knew this was trouble because a plane never returns to the gate and reopens the door for a minor issue or a late passenger.

After several minutes, the captain announced that the ground crew had found a bolt under our plane. He went on to explain that it would take some time to figure out where the bolt came from and if it could be repaired. Every seat was taken and everyone was a little more anxious than on your average flight because it was a holiday. Once it got to an hour, I knew there was no way we were going to make our connection. I was sitting there trying to think of our options while watching the kids and listening to other passengers complain.

Being from Chicago, I can remember American Airlines Flight 191. 32 years after the crash and it's still the deadliest airplane crash on American soil. A missing bolt was determined to be the cause. It was hard keeping this information to myself as I tried to figure out a new plan. A couple of passengers did grab their bags and leave the airplane.

I was thinking our intended flight was the last for the day from Baltimore to Pittsburgh. I had just decided that we should get off the plane and head home and try again the next day. I wasn't too worried about the bolt, I assumed the pilots didn't want to die and would get it right. I was thinking it would be more inconvenient to be stuck in Baltimore for the night. We wouldn't get our bags and we checked the wheelchair all the way to Pittsburgh. It would be a difficult night to be stranded and I figured it was better to be at home to regroup.

It was now 90 minutes past our departure time and I was just standing up to start getting off the plane when the captain gave an update. He announced that the bolt was not from the airplane. He said the bolt had a part number that did not exist in the manual. The pilot even took pictures and sent them to headquarters. Boeing was even consulted and everyone was in agreement that the bolt came from another source. The last part of the announcement informed passengers that it would be at least another 20 minutes before we pushed back from the gate because of paperwork.

Immediately after the update, a Southwest Representative boarded the plane and gave status updates on every one's connections. The very first was Pittsburgh and she said they would hold the plane and that all Pittsburgh passengers would have to hurry to catch the flight. After all the updates, I explained to the representative that Kellisa couldn't walk and there was no way we could be fast. In addition, I assumed the flight would also be sold out and already boarded by the time we got to the plane, if we even made it in time. With that in mind, I explained that four middle seats scattered all over the plane would be waiting for us and with a 2 year old and Kellisa, that would not work for us and our situation.

In case you don't know, Southwest boards disabled passengers and those faking disabilities first because they have an open seating policy. Usually this works great for us and is one of the main reasons we only fly Southwest. However, in this case, it would work against us.

The representative listened and told me she would call Pittsburgh and take care of everything. I did not know what that meant, but I had confidence that it would all work out because she told me not to worry.

I fly Southwest almost exclusively for my job, 100+ flights every year for years because of how they have always treated Kellisa. Kellisa flies over 20 times a year and Kellisa has flown over 150 times in her life. It's been over six years since Kellisa flew on another airline, so most of her flights have been on Southwest and we have never had one complaint about how they handle and treat Kellisa! Most other airlines are not as friendly towards passengers with disabilities.

One example: we were flying back to Chicago for Kellisa's birthday party one year and had to postpone the trip because Kellisa needed emergency brain surgery and would be in the hospital. I called to rebook and even had a note from the doctor if needed. OK, I will rat out the airline. Northwest explained that emergency brain surgery wasn't a good enough excuse to change our flight and we would be charged more to make the changes than the original ticket prices. I went up the ladder and every supervisor gave me the same answer. This was additional stress that I didn't need with Kellisa in the hospital and we ended up losing $600 because there was no way for us to keep our original itinerary. Needless to say, we've never flown Northwest again.

We arrived in Baltimore and made our way to the Pittsburgh flight with Kellisa in an airport wheelchair that Southwest had waiting at our gate. Of course, it was in the A Terminal and we arrived in the B Terminal. As we approached the gate, we had the feeling that they knew we were coming and before we could say anything, the Southwest Gate Agent informed us that he had saved three seats in the first row and one right behind in the second row for us. It was an awesome feeling to be taken care of so well in this day and age of customer-no-service. Relieved, I settled in the middle seat between the two kids and Lisa took the 2nd row seat. Thankfully, this flight was uneventful.

This is just one example of how great Southwest Airlines treats their customers, especially those with disabilities. Other reasons, but not the only ones I/we only travel Southwest: I fly enough to earn a companion pass (that means Kellisa flies free every time because she is with me), 2 bags per person can be checked for free, Southwest never charges a change fee (and with our schedules, we change most of our planned trips at least once) and if you cancel a flight, Southwest lets you apply 100% of the original ticket cost to another flight (as long as it's within 12 months).

Riding Run Trail

Cuyahoga Valley National Park
Riding Run Trail
November 25, 2011

Distance: 4 miles

Elevation Change: 260 feet

We had the opportunity to take a pushike (me pushing Kellisa while hiking) in Cuyahoga Valley National Park the day after Thanksgiving. According to a Trail Guidebook, the Riding Run Trail has "several steep climbs and about two miles of wide, graveled path". Based on that description, I thought it would be a perfect path to push Kellisa along in her Independence Special Needs Jog Stroller. In my excitement, I did not realize that ONLY 2 of the 4 miles were along a graveled path. The guidebook did not mention the condition of the other 2 miles. It was a good thing, because we might not have ventured out on the Riding Run Trail and a great experience would have been missed.

The trail starts out wide and graveled:

and narrows as soon as we start to gain some of the 260 feet:

It's hard to tell, but half the trail is mud between 6 and 10 inches deep:

Leveling out for a scenic ridgeline walk:

The decent:

A small stream crossing near the end of the trail:

The home stretch:

The entire hiking party:

Back Row: Jim-Diane-Bob-Chris

Front Row Cousins: Jackie-Kellisa-Jen

Trail Map:

 

1,000 thank yous to the hike photographer: Jen!



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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.