Show notes
To start off this episode, Emily and Jamie discuss their recent experiences with their kids at the dentist. Jamie shares her frustrations and reflections on the dental appointments, particularly concerning her middle daughter's oral surgery and the dentist's approach to her children's dental care. They discuss the challenges faced by neurodiverse children in dental environments, and their own personal experiences at the dentist as adults.
In this inspiring episode, Jamie welcomes Steve Johnston (@dad.vs.blindness), a radiologist and father, to share his experiences as a dad, particularly how he navigates raising his son who was diagnosed with a rare disease called Bardet-Biedl Syndrome. Steve recounts the journey from his son's birth, marked by polydactyly (extra fingers and toes), to receiving his official diagnosis 7 years later with a potentially devastating prognosis: progressive vision loss leading to blindness. Despite the initial shock and disbelief, Steve reflects on his approach to coping, and emphasizes the importance of processing emotions and seeking professional help in navigating the complexities of grief and acceptance. He highlights the transition from grieving to taking action, and how this led to his family creating a nonprofit organization.Through their candid discussion, Jamie and Steve underscore the significance of community, professional guidance, and individualized approaches in navigating the complexities of rare diseases and parenting.
They spend time discussing the impressive nonprofit's inception and goals, Steve elaborates on the lack of immediate treatment options upon his son's diagnosis and the subsequent motivation to take action. Despite initially lacking a specific target for fundraising, the family embarked on creating a nonprofit, "A Race Against Blindness," with the aim of raising awareness, supporting research, and ultimately funding potential treatments or cures for Bardet-Biedl syndrome and related conditions. Steve shares the challenges of navigating the complex landscape of medical research funding for rare diseases and the fortuitous alignment with a research group in the UK working on potential therapies. Through their nonprofit endeavors and physical challenges like triathlons, the family not only raises funds but also instills values of resilience and perseverance in their children, preparing them to face life's inevitable challenges with mental fortitude and adaptability.
In this week's Live Ask a Nurse segment Jamie and Emily discuss how to manage oversupply, a common concern among breastfeeding mothers. They offer practical tips such as using hand expression or a Haakaa to reduce milk flow before feeding, and reclining during breastfeeding. They emphasize the importance of seeking guidance from a lactation consultant for personalized advice tailored to individual needs and circumstances. They also mention the resources available through the Nurture annual membership.
To learn more about A Race Against Blindness: https://araceagainstblindness.org/
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