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Newsletters: My First Oley Conference
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My First Oley Conference

Donna Noble, Parent of HomePEN Consumer

Last year’s Oley Consumer Conference in Milwaukee was my first ever. It was an experience that I will never forget, and offered more than I had imagined.

As soon as we heard about Oley last February, we wanted to learn more. Our son, Kyle, had been on TPN for more than a year and a half. While visiting the Oley web site I discovered that the annual conference was scheduled for June in Milwaukee. I immediately made plans to attend. When we found out that our son’s GI doctor was going to be speaking, there was nothing that could have stopped us, except, of course, a hospital stay.

We arrived at the conference full of anticipation. Even the 8-hour car drive with our 7-year-old daughter, Kelsey, 2 year old Kyle, and mother-in-law couldn’t dampen our spirits. After settling in our rooms, we headed to the opening night event. Kelsey and Kyle had a great time watching the magician. Kelsey even got on stage. During this event we met lots of people and felt welcome. We were also introduced to curly extension tubing for our son’s TPN by another family whose child is on TPN. The family was nice enough to give us several tubes to try out. We were sold on it immediately and wondered how we ever lived without it. I knew after this first event, that Oley was the group for us.

 

Our First Full Day

The first morning’s continental breakfast was great and provided an opportunity to reconnect with people from the night before and to meet new people. Before the award’s ceremony, we took Kelsey and Kyle to the child care room. I must admit I was a little apprehensive about leaving Kyle. He seldom has anyone watch him besides his nurse or grandmother. Once I met the childcare providers and saw that they were comfortable with Kyle and his tubes, I felt much better. I knew I would be able to relax and enjoy the programs.

The awards ceremony was inspirational. I came way with the feeling that I could handle Kyle’s care and that I was not alone anymore. During the ceremony I decided that I wanted to become a Regional Coordinator and start a local support group so others did not have to wait as long as I did to discover Oley.

Immediately following the awards ceremony was the plenary session entitled “Who Wants To Be A Millionaire?” The entertaining format was a great way to present a lot of information, while not putting everyone to sleep. I only wish there was time for a question and answer session.

Next Oley provided a box lunch for participants. The tables for eating and socializing were located in the middle of the room. Along the perimeter were various vendors and associations. Combining the socializing, eating and information gathering, was an excellant idea. By the time lunch was over, I had discovered many new products and companies. The experience opened up a world I didn’t know existed. I left with bags of information and lots of samples.

After dropping off our daughter for the Oley youth trip to the Clown Museum, and leaving Kyle with his grandmother to nap, my husband and I went to the breakout sessions. The first session we attended was on Motility Drugs. Even though we had tried most of the drugs they covered, we learned a lot of useful information. The second session on support offered a more informal discussion. Unfortunately, Kyle developed a tube and pump problem, so I left early to resolve the issue. Rich stayed, and said the session was informative and motivating.

After going back to our rooms to relax and try to absorb what we had learned, we headed to the Oley Silent Auction. This is a time to bid on items, earn money for Oley, and socialize. We had a great time, bought too much loot, and were able to learn a lot from other families.

 

Day Two

The next morning we attended the plenary session on intestinal failure. I must admit I wasn’t sure if the session was going to be beneficial to us since Kyle wasn’t in intestinal failure, but the information presented related to anyone needing home nutritional support. I found the discussion on bacterial overgrowth especially helpful since it is something we face with Kyle daily. I left with pages of notes to take home to our nurse and discuss with our son’s doctor. His GI doctor was sitting in front of us during the session. Several times we turned to each other and gave the silent look “yes, we will have to look into that or give that a try.”

We dropped our daughter off with the other Oley youths going to the Milwaukee Zoo, before heading to the breakout sessions. My husband and I had the honor of introducing our son’s very special GI doctor, Dr. Jane Balint, in the session “Pediatric Issues.” The session was very good and reaffirmed our belief that Kyle has the best GI doctor around. The parents asked many questions and liked the idea that their children are kids FIRST and patients second. Parents were visibly relieved when Dr. Balint said it was okay stray from the strictly prescribed routine occasionally, if it allows the kids to experience life like other children. My husband and I split for the last breakout session. I attended “Ostomy Care” while he attended “Catheter Care.” I learned about skin protectant products to minimize skin breakdown, and Richard learned about new products to clean around Kyle’s central line. We were disappointed to learn that the cleaning product is not widely available in the USA.

 

Saturday’s Picnic

We were all looking forward to Saturday afternoon’s farewell picnic. Kelsey was eager to play with her new friends, and Kyle couldn’t wait to see the clowns one last time. The location was excellent and allowed for a multitude of activities including flying kites, renting bikes, watching the boats pass, tree climbing, and playing the games planned for the kids. The adults enjoyed socializing one last time, and swapping phone numbers and addresses. The picnic would have been perfect if not for the fact that one of our new friends had to admit their child to the hospital with a fever.

We were sad to head home. We had accomplished so much in just a few days. We had developed friendships, learned lots of new information, found new products, and most importantly, discovered that we are not alone in this journey. As we drove away, I was filled with enthusiasm about trying out the new ideas and starting a local support group. On the drive home we began planning our trip to California for the next Oley conference. We could hardly wait.

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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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