The Oley Foundation is a home nutrition therapy community and advocacy group. WINTER 2023/2024 ISSUE
LifelineLetter
Living with home parenteral and/or enteral nutrition (HPEN)
Braver Together AMY TARPEIN
Elijah is a joy-filled five-year-old boy with a rare brain disorder, lissencephaly, and we are doing our best to care for him. When he was born, we were informed that his time was limited. The experts explained that a feeding tube could be necessary in the future, while also suggesting that we didn’t want to cause him pain or discomfort. Further, every time Elijah was intubated, the risk of airway failure increased. It was hard to imagine he might need a feeding tube, especially when he looked so plump and angelic. Taking all of this into account, I decided to hold off on a decision regarding a feeding tube. Elijah continued to eat by mouth, though as time went by, it became evident that we needed to be Elijah, 2023 more creative in finding ways for him to eat and stay healthy. Elijah’s weight was a significant concern, and we monitored it closely. He appeared to grow typically initially, but then his growth curve started to level off. By the time he was three years old, he weighed only 24 pounds, significantly below average for his age. Finding foods that Elijah could safely swallow became more complicated, and we had to become more vigilant about his diet. His surrogate dad, Mike, helped him by bringing him a nightly peanut butter milkshake, which he loved. Despite the challenges, we remained committed to caring for Elijah and finding ways to help him enjoy life as much as possible.
Getting a G-tube
When Elijah was three and a half years old, we decided to go ahead with G-tube surgery. Even though it was a scary prospect, we knew it was the best thing for him. However, we had many questions and needed help to get good answers. Spend five minutes on Google, and you’ll find a long list of potential problems but little guidance on how to solve them. On the morning of his surgery, as I stroked his hair and looked at his little body, I understood that this would be his source of strength. Despite the uncertainties, the medical team promised to guide me every step of the way. They directed me to a YouTube link. However, it was faulty, and the hospital staff needed to be CONTINUED, PAGE 4
INSIDE THIS ISSUE: 3 Tube Talk Feeding Tube Awareness Week Blenderized Tube Feeding Practice Recommendations 6 Oley Awards 7 Travel Tips 8 From the Desk of the Executive Director 11 DDNC Public Policy Forum 11 Oley Tim Weaver Camp Scholarship 13 Oley Board and Staff Updates 14 The Joan Bishop Lifetime Achievement Award 15 Advocating for Your Child 17 Dear Friend of Oley 18 Butterfly Pig Emerging Innovator Partnership 19 Corporate Partners 19 Notable Individual Contributions 20 2024 Calendar Save the Date: Oley 2024 Consumer Conference
