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Camp Fills a Hole

Tim Weaver

 
    Tim at the Double H Ranch, a Hole in the Woods camp.

Every year for the past six years, I have been granted the privilege of attending Double H Ranch, a Hole in the Woods camp in New York State. This is a camp for children ages six to sixteen who have chronic medical conditions. We heard about this camp from Oley. Every year, I love to head out to Lake Luzerne, in the Adirondack Mountains, for a week at camp. http://www.cbs6albany.com/video/?videoId=292409978001&lineupId=1143371293&play=now.

The experience is incredible. You get to meet really great people and learn about them and recognize everyone for who they are. I have made friends at camp and remain in contact with a large number of both campers and counselors.

 

Medical Issues

When I am at the Double H ranch, all of my medical needs are taken care of. The medical staff follows all of the medical procedures outlined by my doctor and my mom while not interfering with my camp experience. The medical care is outstanding, yet it does not curtail my independence.

Never have my health complications disrupted the camp experience. The only time I wasn’t able to swim with a central line, I enjoyed a game of kickball at Team Adventure with a slightly younger group instead. No matter what complications you have, everyone is accommodating and very accepting.

I have never had a problem with enteral feeds or with parenteral nutrition (PN) at camp. In 2008, I went to camp on PN. It was my first time on PN in ten years and I went out to New York from Chicago, Illinois, PN, two-week-old central line, and all. There were no issues. The dressing was changed once, I watched the nurse add all the vitamins and additives to my PN, and the line was flushed. Everything was taken care of by the incredible medical staff.

 

My Mom

Tim and cabinmates.

People who know my mom called her insane to take these risks. She brought me seven hundred miles with a two-week-old central line to go to this camp. That might mean something: despite all the risks, we went. Yes, she called the camp nurse every night, but she also learned to let go and not be so overprotective.

I must say that part of my mom’s comfort came from me being responsible. She knew I would alert the nursing staff to how I felt, and if I felt off, tell them what I thought was best to do. Parents also get to meet with the nurse on day one of camp, and the nurse will spend as much time as the parents want going over the instructions to make sure they feel comfortable leaving their children.

 

Good Times

The counselors at camp are incredibly attentive to your specific desires. They are the best. They ensure that everyone is enjoying themselves and that everyone is maintaining a healthy status. (“HH” stands for Health and Happiness.)

In 2008, I had a blast playing softball, kickball, and basketball. I also could be found spinning around and around in circles at the Great Escape (a Six Flags park), and enjoying fishing and boating on Lake Vanere and horseback riding. On the last night we had a camp-wide game, a cookout, a campfire, and a talent show. Every year, I must gain several pounds from all the excellent food that I eat.

Everybody always has a great time at camp, and saying goodbye is the hardest, even though we know we will be returning the next year. Double H is truly an amazing experience. Everyone deserves at least one week in the woods.

 

A Parent’s Perspective on Summer Camp

Ann Weaver

We first heard of the Double H camp more than ten years ago from an article in the LifelineLetter. At the time, Tim was four. He was on G-tube feeds and, while recently off HPN, he still had a central line for hydration. The thought of dropping my child, with a chronic health condition, off at camp was scary, to say the least. I could not imagine relinquishing his care to a stranger, after being his primary caregiver since he was an infant. Yet less than four years later, with Tim only on tube feeds, we decided to give it a try.

Tim was filled with excitement on our first trip out east to camp. I had prepared for months for this—filled out multiple-page applications with meticulous detail, planned for about every possible eventuality—but I found myself overwhelmed with mixed emotions. I was happy for Tim while at the same timed worried about how things would go. How could anyone provide the same care for my child as I had for the past eight years?

Our fifteen-hour drive east allowed for even more brewing of emotions and fears—while Tim was crawling out of his skin. Pulling into the parking lot at camp—in the beautiful pristine setting of the lower Adirondacks—we were greeted with clapping and cheering. It reminded me of being in a birthing room with the shouts of “It’s a boy!” I still get chills and am brought near tears when I think of that moment. Tim ran off with the counselors not long after we arrived without so much as a good-bye. It was very traumatic for me, but in a good way it was the beginning of letting go—for all of us.

 

The Routine

Ann going over Tim’s care with the nurse.

When we bring Tim to camp, we drop off his medical supplies and meet with the nurse responsible for his care. The nurse reviews the details outlined on his application, which have been transferred to a daily medical schedule. We can update any information at this time.

Tim’s first five years at camp he was on only enteral nutrition and required monitoring of his hydration status. While there were a few bumps initially, I learned that providing more details, and little things like bagging supplies by day, facilitated his care.

 

Accommodations

This summer, because of surgery, multiple hospitalizations, and a return to HPN, it looked as if camp would be out for Tim. After several calls with the admission and nursing directors, however, we were assured that they were willing and ready to take on Tim’s medical needs so long as we felt comfortable with it. In addition, they offered us the choice of any remaining camp session. They wanted Tim to make it to camp.

Our annual road trip was out of the question (a disappointment to my husband Mike and me, as we would not get our annual respite on Lake Champlain). Instead, I flew Tim out east and spent the week with Oley staff members Roz and Joan and volunteered in the Oley office after dropping Tim at camp.

While I had had my doubts and fears about the trip, I am so glad we took the chance. It was the first time all summer I really saw Tim smile. The greetings of “It’s a boy!” then “It’s Tim Weaver!” as the counselors closed in on our car, once again brought me near tears.

Tim’s nurse allowed me as much time as possible to go over his care plan—and reassured me that he cared for kids on PN on a daily basis. I took the opportunity to call regularly to check in on how Tim was doing, and was always asked how I was doing.

 

Lasting Rewards

Each year we see growth in Tim after the week at camp. He has matured and shows signs of accepting more responsibility for his own care. He also comes back with a renewed spirit from being uplifted by the counselors, volunteers, staff, and other campers, many of whom he stays in touch with.

While camp has been rejuvenating for Tim, it has also allowed us to step back from Tim’s care. It has helped us make the transition of letting go a little more easily.

 

Paving the Way for a Double H Camp Experience

Tim standing in front of the “H” trees at camp.

 

Over the years Oley Foundation staff have witnessed the excitement that fills the hearts of campers as they set off for a fun, safe experience away from home, and away from their normal caregivers. The boost in spirits and maturity we see upon their return is remarkable. The wonders the respite offers their parents is equally fulfilling to behold. We are willing to help connect families with others who have Double H experiences to share, to provide a friendly face at the Albany Airport, etc. Contact us at (800) 776-OLEY or bishopj@mail.amc.edu.

This year the folks at the Double H Ranch will offer up to 6 slots at each session for Oley members. You are invited to visit www.doublehranch.org to learn more about the camp and/or to contact the admissions office at (518) 696-5676 extension 222 or 263. The application process for 2009 begins this January and the deadline is in April.

more Calendar

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5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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