Tuesday, November 29, 2011

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 photgrapher: Jen!

Wednesday, November 23, 2011

Campbell Hill

Kellisa's 4th State Highpoint:

Campbell Hill, Ohio

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

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.

Tuesday, November 22, 2011

Britton Hill

Kellisa's 2nd State Highpoint:

Britton Hill, Florida

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.

Monday, November 21, 2011

Brasstown Bald

Kellisa's 1st State Highpoint:

Brasstown Bald, Georgia

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.