Tuesday, September 27, 2011

Grand Island National Recreation Area

Grand Island National Recreation Area
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. 

Monday, September 26, 2011


September 26, 2011

This was suppose to be our first post about an adventure we recently shared on Grand Island in Lake Superior with Primo Matt. The trip report and pictures are ready to post, but today is not the time. 

Some, if not most people have a hard time understanding "WHY" I usually take the difficult path with Kellisa. This afternoon, with the force of a ton of bricks, my dedication to Kellisa's Path was strengthened to new levels.

Four days ago, one of Kellisa's friends went home from school sick with a fever. Kellisa has known this little girl for over 9 years. In addition to school, their paths have crossed at dance class and summer camps. Today, Kellisa came home from school with the news that her friend passed away.

A beautiful girl traded her wheelchair for a set of wings way too soon!

With a heavy heart, I will attempt to answer "WHY" with a few common questions and answers from encounters I share along Kellisa's Path:

Why do you take Kellisa with you?

Kellisa loves the travel and adventures just as much as me...maybe more.

Why do you go on so many adventures when most people would be happy with just one?

See the previous answer and because I can. There will be a day when I can't get Kellisa to the summit or the bottom of a canyon. Hopefully, that day is many decades away, but it can be tomorrow and I think about that every single day. When I can't get Kellisa to those faraway places, her adventure career will be over and that breaks my heart. Most parents say, "you can do anything or be anything when you grow up" to their kids. I'll never be able to think or say that about Kellisa.

Are you looking to find something on your trips?

Absolutely! I'm looking for a miracle for Kellisa.

A miracle? The next time you fly somewhere, take notice of how many people need a wheelchair for boarding a plane (especially on Southwest). I've been averaging 150+ flights for work every year for many years, plus an additional 20-25 flights a year with Kellisa. I take notice on every flight and there is at least one miracle on 95% of all flights. Unfortunately, Kellisa hasn't been the beneficiary of a miracle yet, but I've devoted myself to trying.

Something amazing happens at 35,000ft. to most of the people who needed that wheelchair to board a plane ahead of everyone else. How do I know these miracles occur? Because 9 out of 10 people who use a wheelchair to board do not need them to get off the plane. Some of the healing is truly amazing and it should be reason for further study by doctors and clergy:  

I've seen people run to catch the tram to the terminal while dragging 3 carry-on bags when two hours earlier they needed a wheelchair.

I've seen people run to baggage claim and walk off with two overloaded suitcases when two hours earlier they needed a wheelchair.

I've had people push me while holding their carry-ons to walk off the plane first when two hours earlier they needed a wheelchair.

When I see people faking disabilities, I hope Karma will cause these people to someday wheel a mile in Kellisa's wheelchair. Does that make me a horrible person or just a frustrated father who loves his daughter with everything he has?

Here's a tip- look for airport wheelchairs at the gate. If someone can walk into the airport to get a wheelchair from an airline, they will most likely be walking off the plane without a wheelchair. I know there are probably a few non-disabled people that really need the extra help for long walks and I'm OK with that, but that is not the case most of the time. 

Kellisa always needs her wheelchair and I anxiously await the day she walks off the plane. Until that day, I will always have an extra reason to fly as often as possible with Kellisa. In my thoughts and prayers, I offer to be the last person on every flight for the rest of my life and love that middle seat between two huge smelly guys with no overhead space for my backpack, if that miracle would just come through for Kellisa. There is no greater picture in my mind than Kellisa's proud smile as she gets out of her chair and "bring feet" to walk off a plane for the first time.

Here's a picture from our recent 5 day trip to the upper Midwest. This is Kellisa and our mountain of gear I have to navigate alone through the airports:

Friday, September 23, 2011

Born Alive

Rush Medical Center
May 23 to September 13, 1999

"They were born alive".

Most new fathers probably take for granted that their baby/babies would be born alive. I did not have that luxury, so hearing those words as the doctor ran by me in the hospital hallway were the greatest words ever spoken to me.

The best doctors in Chicago prepared us for the worst, if Kellisa was born alive, they said she would live no more than a couple of hours. Kirsten was the healthy twin. The girls were born 9 hours and 21/22 minutes into the 25th week of gestation by emergency c-section. The situation was such that the doctor was willing to start the c-section without anesthesia. Fortunately for Lisa, the anesthesiologist arrived just in time. The minimum for any baby to survive is the 25 week point. It was obvious the girls were on the edge of life, but they were off to a good start.

Both girls made it through their first night. Unfortunately, Kirsten's blood vessels weren't developed enough to survive outside the womb and she passed away on May 24, 1999. Devastated and heart broken don't even begin to describe the feelings of losing a baby. Kirsten was suppose to be the healthy girl and she was gone. A few feet away, Kellisa was fighting for her life and we had to find the strength to be supportive for Kellisa. We needed Kellisa as much as she needed us.

Kellisa (foreground) and Kirsten:

Kellisa's birth weight was 2 pounds and 1.33 ounces. Lisa's hand inside the incubator to provide a perspective of Kellisa's size:

Kangaroo-therapy is the practice of holding premature babies with skin to skin and heart to heart contact with the mother and father. Even though Kellisa was extremely unstable and fragile, we began kangaroo-therapy within a week of Kellisa's birth. One afternoon as I was enjoying a kangaroo-therapy session, the alarms went crazy indicating that Kellisa stopped breathing. This happened fairly often and you get to the point where it doesn't worry you too much because you would just flick Kellisa's foot and her breathing would always start back up and the alarms would stop. This time was different, Kellisa coded and doctors and nurses scrambled from every direction to work on reviving Kellisa. It took 45 minutes to stabilize Kellisa enough to move her off my chest and return her to the incubator.

Kangaroo-therapy with dad and mom:

A nurse holding Kellisa:

When Kellisa was less than two weeks old, she needed her first surgery. Kellisa was born with a PDA, a congenital heart defect where her ductus arteriosis did not close after birth and needed to be corrected with surgery.

The red arrow points to the scar on Kellisa's back from the PDA surgery:

Kellisa was born with hydrocephalus, a build up of fluid inside the skull. We knew Kellisa would need a shunt placement to help drain this fluid, but the neurosurgeon wanted Kellisa to weigh a minimum of 4 pounds and 6.54 ounces before attempting the operation. Towards the end of July, Kellisa was getting close to the target weight.

Kangaroo-therapy on July 25th:

The pressure was building up inside Kellisa's skull and her head was increasing in size everyday. At 4 pounds and 3.02 ounces, the neurosurgeon decided we couldn't wait any longer and a V-P Shunt was placed.

The shunt was placed at the back of Kellisa's head and a tube runs down to her stomach where the excess fluid is drained and reabsorbed by the body. Two bandages are over the shunt site and where an incision was made to make sure the tube was correctly placed in her stomach area: 

Kellisa's first EEG on August 6th to check for seizure activity:

August 10th, Kellisa sleeps in an open bed on a nasal cannula:

If you look closely, you can see the scars from Kellisa's shunt surgery:

 August 16th, Kellisa has her 2nd EEG:

 August 19th, for the first time, Kellisa does not have tape on her face:

 August 28th, Kellisa is not enjoying her first real bath:

Kellisa would spend 16 weeks and 1 day in Rush Medical Center (formerly: Rush-Presbyterian-St. Lukes Medical Center). Lisa spent every night, except for a couple, sleeping in the hospital. I averaged 4-5 nights a week also sleeping in the hospital. We basically moved in to the hospital to be close to Kellisa and encourage her as she fought to survive. I credit Kellisa's toughness and determination as the main reasons she survived, but I truly believe our constant presence, love and support also played a roll. 

 Just down the hall from Kellisa, this is the room we called home for 113 days and lived out of the black and yellow backpack on the floor:

Kellisa's last bed space:

Kellisa would finally be released on September 13th. The discharging doctor was the same doctor that told me the girls were born alive. I asked the doctor if he thought Kellisa would ever go home back on May 23rd. This is a doctor who works in a Neonatal Intensive Care Unit that takes care of 90-110 babies at any given time, so his experience and opinion is beyond question. He responded that he never would have thought this day would arrive. If we would have asked for odds back in May, he would have given Kellisa a 5% chance of ever going home...just to give us a little hope.

Kellisa was still on oxygen and multiple medications, but was finally going home on September 13th:

The final approval was granted when Kellisa was fitted in her car seat with the help of a nurse and several hospital towels:

 Finally home:

 Kellisa sleeping in her own bed for the first time:

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