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Newsletters: At Home at the Annual Oley Conference, A Parent’s Perspective
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At Home at the Annual Oley Conference, A Parent’s Perspective

Jennifer Rath

  Austin met Ellie (left) and other friends “with bags and lines” at the meeting.

 

Last year was our first Oley conference. The decision to attend the conference was not necessarily an easy one. I LOVED the idea of meeting other families with kids who were HPN and G-tube dependent; of learning about the latest research and information about how to maximize my son’s health; and of meeting some of the people in person who had educated, supported, and inspired me after Austin was born with Short Gut. But truthfully, the first thoughts that popped into my head were, “Can I deal with airport security and flying with him? How will I manage getting all his supplies to the conference and trying to do his care while attending a conference? What if he has a medical emergency while we’re out of state? And, can I really trust someone else to watch him in childcare while I attend some of the seminars?” I think I forgot that I would be surrounded by people who have lived in our world, and who could help us get through any challenges.

 

I knew I had to get Austin’s input on attending the conference to help make the decision. I explained to Austin, who was almost four at the time, that there was a special conference where people who have ostomy bags, G-tubes, and central lines like him all get together to make friends and learn about how to stay healthy. Did he want to go? He was initially in disbelief. “There will be a lot of people with bags and lines like me?” he asked. He then started shouting, “Yes, I want to go to the ‘Bag, Line, and G-tube Conference’!” And so, in a leap of faith that everything would work out, we made our reservations and started planning. As the conference approached, Austin told me, “Mom, you’re not going to fit in there, but I will.” I realized how important it is, even at this young age, to be surrounded by people who are just like you.

Austin (right) meeting long-time consumer Don Young at the 2010 Oley Conference.

 

Most everything went smoothly, from flying to shipping our supplies directly to the hotel to the childcare, which Austin loved! There were a few challenges—a middle-of-the-night ostomy explosion and forgetting to have formula shipped—but they were solvable problems. I learned so much and met so many great people that my expectations were exceeded, and I was so thankful we made the trip. For me, the most amazing moment was meeting Don Young (who had been on TPN for thirty-five years!) and getting a picture of Austin and Don together.

 

Within a week of last year’s conference ending, Austin began asking when we could go to the next ‘Bag, Line, and G-tube Conference.’ We’re planning on going, and we hope to see you in Bloomington, Minnesota!

LifelineLetter, March/April 2011

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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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