The Pressing On Podcast

Episode 16: REGAN REEDER | “Celebrating the Holidays with a Medically-Fragile Child”

In this holiday-themed episode 16, we welcome Regan Reeder back to the podcast to discuss the complexities of celebrating the holidays with a medically fragile child. She recounts their many holiday experiences with her daughter, Myka, and covers practical tips for traveling with special medical needs while emphasizing the significance of emergency preparedness. Richie and Regan discuss family challenges, essential packing tips, dietary restrictions, and the importance of support from family and friends. The discussion touches on empathy, understanding, and the significance of creating joyful memories despite the challenges. If your goal is to be present and supportive with your family over the holidays, then you’ll be greatly encouraged by Regan’s words! Regan Reeder is a co-founder of Pressing On and currently a K-12 Cyber Special Education Facilitator. She’s always an advocate for the outsider and on the lookout for helpful, inclusive practices, especially for those with special needs.  As a medical momma who’s experienced her daughter’s long road to recovery from liver transplant, Regan’s passionate about resourcing other transplant families. She’ll be spending lots of time watching the Hallmark Channel here over the holidays and enjoying family time making memories with Richie, Alivia and Myka. Links & Resources: * https://www.pressingon.org/hospital-checklists [https://www.pressingon.org/hospital-checklists] * https://www.getmyid.com/medical [https://www.getmyid.com/medical] SPONSOR: The Pressing On Podcast is sponsored by the Children's Organ Transplant Association [https://cota.org/] (COTA).  https://cota.org [https://cota.org/]

Episode 15: GARRET & TARA WELSH | “Navigating a Congenital Diaphragmatic Hernia (CDH) Diagnosis during Covid”

In Episode 15, Garret and Tara Welsh share about their journey of resilience as they faced the challenges of their son Theo's diagnosis of congenital diaphragmatic hernia (CDH) during the Covid-19 pandemic in 2020. The conversation delves into their personal backgrounds, the emotional impact of the diagnosis, the logistical challenges posed by the pandemic, and the invaluable support they received from family and friends during this difficult time. In this heartfelt conversation filled with faith, Garret and Tara share their journey through the challenges of their son Theo's birth and subsequent medical issues. They discuss the emotional rollercoaster of waiting for surgery, the importance of having a routine while navigating uncertainty, and the necessity of self-care during stressful times. In episode 15, don't miss the Welsh family's valuable insights for those dealing with a CDH diagnosis and traveling for healthcare! Garret and Tara Welsh have been married for 11 years and they have 3 active boys: Bennet, Theo and Zeke. Their family resides in Irwin, PA where Garret is a Union Carpenter and Tara has a background in healthcare. They’re very active at Reclamation Church and love spending time out on the lake. SPONSOR: The Pressing On Podcast is sponsored by the Children's Organ Transplant Association (COTA).  https://cota.org [https://cota.org/]

Episode 14: MIKE & CHARITY MCKINNEY | “Embracing the Challenges of Propionic Acidemia”

In Episode 14, Charity and Mike McKinney share their heartfelt journey as parents navigating the challenges of pediatric transplant for their daughter Annabelle, who was born with propionic acidemia. They discuss their early struggles with infertility, the shock of Annabelle's diagnosis, and the emotional rollercoaster of hospital stays and medical decisions. You'll enjoy listening to the McKinneys celebrate Annabelle's growth and development post-transplant, emphasizing the importance of focusing on her strengths and embracing their unique family dynamics.  They emphasize the importance of their faith throughout the conversation and the need for active involvement in their child's care. Mike and Charity discuss the balance between family life and caregiving, the significance of humor during tough times, and the necessity of preparing for the long-term challenges of a transplant journey.This southern couple from North Carolina will make you feel at home right away with their openness and vulnerable story.  If you're a parent of a child with propionic acidemia or find yourself on the journey of transplant, you don't want to miss this episode! Links & Resources: * Ronald McDonald House: https://rmhc.org [https://rmhc.org/] * Organic Acidemia Association: https://oaanews.org [https://oaanews.org/] * Miracle League: https://www.miracleleague.com [https://www.miracleleague.com/] SPONSOR: The Pressing On Podcast is sponsored by the Children's Organ Transplant Association (COTA). https://cota.org [https://cota.org/]

Episode 13: JEN LAU | “Finding Grace in the Challenges of Biliary Atresia”

In Episode 13 we welcome Jen Lau, a dedicated advocate and mother who shares her journey navigating the complexities of her son Nathan's diagnosis of biliary atresia.  After Nathan's diagnosis, he underwent a life-saving liver transplant at nine months from a living donor.  Jen recounts the logistical challenges her family faced, the emotional toll of the diagnosis and the critical role of community support.  You’ll enjoy listening to Jen’s openness about the need for parental grace and she talks about their unique journey towards finding a living donor for Nathan's liver transplant. This transformative experience ignited Jen’s passion for advocacy in pediatric liver disease and transplantation. She has since held leadership positions in several organizations, including the Society of Pediatric Liver Transplantation (SPLIT) and the Starzl Network.  In January 2022, she helped found BARE, Inc. (Biliary Atresia Research & Education) in order to support families affected by biliary atresia. Jen combines her expertise in business management and human resources with her advocacy efforts, while she is also pursuing her Master’s in Public Health. She lives in the western suburbs of Chicago with her husband and two children. Links & Resources: * https://www.bareinc.org [https://www.bareinc.org/] * SPONSOR: The Pressing On Podcast is sponsored by the Children's Organ Transplant Association [https://cota.org/] (COTA). https://cota.org [https://cota.org/]

Episode 12: SARAH VARGAS | “Moving Across the Country for a 2nd Pediatric Liver Transplant”

In Episode 12, we chat with transplant parent Sarah Vargas, whose daughter Rosie was born with a rare metabolic condition called Maple Syrup Urine Disease, a sometimes fatal condition in which the body is unable to process certain proteins. Sarah and her husband Tony have navigated two pediatric liver transplants for Rosie, relocating to Pittsburgh in 2015 for specialized care at Children’s Hospital. Originally from California, Sarah holds a bachelor’s in marketing and an MBA. She’s also a former board member of Transplant Families, an organization that supports families on the transplant journey by providing inspiration, support, and education. Married for over 10 years, Sarah and Tony have three wonderful children. Join us as Sarah shares her family’s inspiring journey, the challenges of relocating for Rosie’s care, the resilience it takes to persevere through multiple transplants and the importance of mental health before, during, and after transplant. You won’t want to miss it! Links & Resources: * https://www.core.org/ [https://www.core.org/] * https://www.transplantfamilies.org/ [https://www.transplantfamilies.org/] * https://starzlnetwork.org [https://starzlnetwork.org/] SPONSOR: The Pressing On Podcast is sponsored by the Children's Organ Transplant Association [https://cota.org/] (COTA).