Hydro Heroes Unite

Dancing in the Rain: Scott + Angelica’s Story of Hope + Healing

In this final episode of Season One, I bring it home (literally) and share parts of my conversation with my husband Scott as he opens up about his perspective through Angelica’s hydrocephalus and Dandy-Walker diagnosis. Scott opens up about: * The shock of receiving a diagnosis during pregnancy * Navigating NICU life, Hurricane Maria and unexpected PICU transfers * Finding humor in hard places  * Advocating as a caregiver and trusting your gut (and your partners) * How resilience forms slowly, moment by moment This episode is funny, heartfelt, and deeply hopeful. Sometimes, the most powerful form of resilience is learning to smile, laugh, and eventually dance in the rain. It's a tribute to caregivers, partners, and every family who has ever weathered a storm together. If this season moved you, please share the episode or leave a review to help more hydro families feel seen and supported. Resources:  Hydrocephalus Association RAISE Resilience Program: https://www.hydroassoc.org/raise-resilience-program/ [https://www.hydroassoc.org/raise-resilience-program/] Caring for the Caregiver: How to Recognize, Prevent, and Manage Burnout: https://www.hydroassoc.org/caring-for-the-caregiver/ [https://www.hydroassoc.org/caring-for-the-caregiver/] Support Groups: https://www.hydroassoc.org/find-a-community-network/ [https://www.hydroassoc.org/find-a-community-network/] Mindfulness for Hydrocephalus: Tools to Manage Stress: https://www.hydroassoc.org/mindfulness-for-hydrocephalus/ [https://www.hydroassoc.org/mindfulness-for-hydrocephalus/] Resource for Parents: https://www.hydroassoc.org/parent-hydrocephalus-resources/ [https://www.hydroassoc.org/parent-hydrocephalus-resources/] Hydrocephalus CONNECT Peer Support: https://www.hydroassoc.org/hydrocephalusconnect-peer-support/ [https://www.hydroassoc.org/hydrocephalusconnect-peer-support/] Congenital Hydrocephalus: https://www.hydroassoc.org/congenital-hydrocephalus/ [https://www.hydroassoc.org/congenital-hydrocephalus/] Easily Explain Hydrocephalus to a Child with Confidence: https://www.hydroassoc.org/how-to-explain-hydrocephalus-to-a-child/ [https://www.hydroassoc.org/how-to-explain-hydrocephalus-to-a-child/] Complications of a shunt system: https://www.hydroassoc.org/complications-of-shunt-systems/ [https://www.hydroassoc.org/complications-of-shunt-systems/] Shunt Malfunction: Frequently Asked Questions: https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/ [https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/] Your Healthcare Team: https://www.hydroassoc.org/your-healthcare-team-2/ [https://www.hydroassoc.org/your-healthcare-team-2/] Hydrocephalus Resources: https://www.hydroassoc.org/parent-hydrocephalus-resources/ [https://www.hydroassoc.org/parent-hydrocephalus-resources/] WALK to End Hydrocephalus: https://www.hydroassoc.org/find-a-walk-near-you/ [https://www.hydroassoc.org/find-a-walk-near-you/] Learn more about hydrocephalus: https://www.hydroassoc.org [https://www.hydroassoc.org/] Request a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform [https://docs.google.com/forms/d/e/1FAIpQLSc8ixosshZ85SAWbsfasMc5UR7RSfEZDx5WFrNNAjfM3bII0g/viewform?usp=sharing&ouid=105815449341885032024] Follow on Instagram: @taishaycameron [https://www.instagram.com/taishaycameron], @hydroassoc [https://www.instagram.com/hydroassoc/]

Self-Care is Not a Luxury, it’s a Responsibility: Advocacy & Resilience with Pediatric Psychologist Dr. Elizabeth McRae

Today I’ll share parts of my conversation with Dr. Elizabeth McRae, a pediatric psychologist at the University of Alabama, to talk about empowering children with complex medical conditions and supporting the families who care for them. We explore: * The difference between pediatric psychologists and neuropsychologists * How parents can help kids learn to advocate for themselves * The RAISE program, which helps caregivers build resilience and find balance * Why self-care and mental health are essential for families raising medically complex kids Resources & Links: Hydrocephalus Association RAISE Resilience Program: https://www.hydroassoc.org/raise-resilience-program/ [https://www.hydroassoc.org/raise-resilience-program/] Caring for the Caregiver: How to Recognize, Prevent, and Manage Burnout: https://www.hydroassoc.org/caring-for-the-caregiver/ [https://www.hydroassoc.org/caring-for-the-caregiver/] Mindfulness for Hydrocephalus: Tools to Manage Stress: https://www.hydroassoc.org/mindfulness-for-hydrocephalus/ [https://www.hydroassoc.org/mindfulness-for-hydrocephalus/] Neuropsychology 101: Understanding Cognitive Function in Hydrocephalus: https://www.hydroassoc.org/understanding-cognitive-function-hydrocephalus/ [https://www.hydroassoc.org/understanding-cognitive-function-hydrocephalus/] Support Groups: https://www.hydroassoc.org/find-a-community-network/ [https://www.hydroassoc.org/find-a-community-network/] HydrocephalusCONNECT Peer Support: https://www.hydroassoc.org/hydrocephalusconnect-peer-support/ [https://www.hydroassoc.org/hydrocephalusconnect-peer-support/] Easily Explain Hydrocephalus to a Child with Confidence: https://www.hydroassoc.org/how-to-explain-hydrocephalus-to-a-child/ [https://www.hydroassoc.org/how-to-explain-hydrocephalus-to-a-child/] Transitioning from Pediatric to Adult Care: https://www.hydroassoc.org/transitioning-from-pediatric-to-adult-care/ [https://www.hydroassoc.org/transitioning-from-pediatric-to-adult-care/] Timeline for a Successful Transition to Adult Care: https://www.hydroassoc.org/timeline-for-transitioning-to-adult-care/ [https://www.hydroassoc.org/timeline-for-transitioning-to-adult-care/] Toolkit for Transitioning Medical Care: https://www.hydroassoc.org/toolkit-transitioning-medical-care/ [https://www.hydroassoc.org/toolkit-transitioning-medical-care/] Transitioning to Independence: https://www.hydroassoc.org/transitioning-to-independence/ [https://www.hydroassoc.org/transitioning-to-independence/] Prescription Management: Helping Your Teen Master It: https://www.hydroassoc.org/teen-prescription-management/ [https://www.hydroassoc.org/teen-prescription-management/] Individualized Education Program (IEP): https://www.hydroassoc.org/individualized-education-program/ [https://www.hydroassoc.org/individualized-education-program/] Your Healthcare Team: https://www.hydroassoc.org/your-healthcare-team-2/ [https://www.hydroassoc.org/your-healthcare-team-2/] Complications of a shunt system: https://www.hydroa [https://www.hydroassoc.org/complications-of-shunt-systems/] Learn more about hydrocephalus: https://www.hydroassoc.org [https://www.hydroassoc.org/] Request a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform [https://docs.google.com/forms/d/e/1FAIpQLSc8ixosshZ85SAWbsfasMc5UR7RSfEZDx5WFrNNAjfM3bII0g/viewform?usp=sharing&ouid=105815449341885032024] Follow on Instagram: @taishaycameron [https://www.instagram.com/taishaycameron], @hydroassoc [https://www.instagram.com/hydroassoc/]

The Search for the Silver Lining: Melissa & Abagail’s Hydrocephalus Story

In this heartfelt and often funny episode of Hydro Heroes Unite, I sit down with Melissa, a fellow NICU mom and twin mom, whose daughter Abagail lives with hydrocephalus, hemiplegia, cortical visual impairment, and epilepsy. Melissa shares her heart and her humor as she reflects on their family’s journey — from the early NICU days to navigating the complexities of hydrocephalus, including challenges many parents don’t expect. We talk about the power of trusting your instincts as a parent, finding silver linings even in tough times, and the huge difference it makes when doctors show humility, empathy, and true partnership. Melissa has been a long-time advocate for the hydrocephalus community, serving for eight years as co-chair of the National Capital WALK to End Hydrocephalus and continuing to champion disability rights and inclusion. Whether you’re a newly diagnosed family or years into this journey, this conversation is a reminder that you’re not alone — and that there’s strength in community, advocacy, and a little bit of humor along the way. Resources: Hydrocephalus in infants and children: https://www.hydroassoc.org/hydrocephalus-in-infants-and-children/ [https://www.hydroassoc.org/hydrocephalus-in-infants-and-children/] Acquired Hydrocephalus: https://www.hydroassoc.org/acquired-hydrocephalus/ [https://www.hydroassoc.org/acquired-hydrocephalus/] Shunt System: https://www.hydroassoc.org/shunt-systems/ [https://www.hydroassoc.org/shunt-systems/] Complications of a Shunt System: https://www.hydroassoc.org/complications-of-shunt-systems/ [https://www.hydroassoc.org/complications-of-shunt-systems/] Shunt Malfunction: Frequently Asked Questions: https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/ [https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/] Epilepsy and Hydrocephalus: https://www.hydroassoc.org/epilepsy-and-hydrocephalus/ [https://www.hydroassoc.org/epilepsy-and-hydrocephalus/] Cerebral/Cortical Visual Impairment (CVI) and Hydrocephalus: https://www.hydroassoc.org/understanding-cvi-and-hydrocephalus/ [https://www.hydroassoc.org/understanding-cvi-and-hydrocephalus/] ETV and ETV with CPC: https://www.hydroassoc.org/etv-and-etv-with-cpc/ [https://www.hydroassoc.org/etv-and-etv-with-cpc/] Get Support: https://www.hydroassoc.org/get-support/ [https://www.hydroassoc.org/get-support/] WALK to End Hydrocephalus: https://www.hydroassoc.org/find-a-walk-near-you/ [https://www.hydroassoc.org/find-a-walk-near-you/] Normal pressure hydrocephalus (NPH): https://www.hydroassoc.org/normal-pressure-hydrocephalus-2/ [https://www.hydroassoc.org/normal-pressure-hydrocephalus-2/] Hydrocephalus Resources: https://www.hydroassoc.org/resources/ [https://www.hydroassoc.org/resources/] Learn more about hydrocephalus: https://www.hydroassoc.org [https://www.hydroassoc.org/] Request a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform [https://docs.google.com/forms/d/e/1FAIpQLSc8ixosshZ85SAWbsfasMc5UR7RSfEZDx5WFrNNAjfM3bII0g/viewform?usp=sharing&ouid=105815449341885032024] Follow on Instagram: @taishaycameron [https://www.instagram.com/taishaycameron], @hydroassoc [https://www.instagram.com/hydroassoc/]

Helping Children with Hydrocephalus Thrive with Neuropsychologist Dr. Jennifer Queally

What every parent needs to know about helping kids with hydrocephalus thrive at home and school. Today’s conversation with neuropsychologist Dr. Jennifer Queally explores the impact of hydrocephalus on learning and development, how parents and schools can collaborate, and the challenges children face in self-advocacy. The conversation also dives into practical strategies for supporting independence, preparing for adulthood, and balancing the realities of parenting a child with a medical condition. Whether you’re new to this journey or years along, you’ll find encouragement, insights, and hope in this discussion. Episode 5 Resources: Breaking Myths About Hydrocephalus: What’s Fact and What’s Fiction?: https://www.hydroassoc.org/breaking-myths-about-hydrocephalus/ [https://www.hydroassoc.org/breaking-myths-about-hydrocephalus/] Types and Causes of Hydrocephalus: https://www.hydroassoc.org/types-and-causes/ [https://www.hydroassoc.org/types-and-causes/] Grey is the new White? Not in the brain!: https://www.hydroassoc.org/grey-is-the-new-white-not-in-the-brain/ [https://www.hydroassoc.org/grey-is-the-new-white-not-in-the-brain/] As Your Child Grows: https://www.hydroassoc.org/as-your-child-grows/ [https://www.hydroassoc.org/as-your-child-grows/] Essential Guide: Developmental Milestones in Hydrocephalus: https://www.hydroassoc.org/developmental-milestones-in-hydrocephalus/ [https://www.hydroassoc.org/developmental-milestones-in-hydrocephalus/] Shunt Systems: https://www.hydroassoc.org/shunt-systems/ [https://www.hydroassoc.org/shunt-systems/] ETV and ETV with CPC: https://www.hydroassoc.org/etv-and-etv-with-cpc/ [https://www.hydroassoc.org/etv-and-etv-with-cpc/] School and Hydrocephalus: https://www.hydroassoc.org/school/ [https://www.hydroassoc.org/school/] High School and Hydrocephalus: https://www.hydroassoc.org/high-school/College [https://www.hydroassoc.org/high-school/College] and Hydrocephalus: https://www.hydroassoc.org/college/Parent [https://www.hydroassoc.org/college/Parent] Resources: https://www.hydroassoc.org/parent-hydrocephalus-resources/ [https://www.hydroassoc.org/parent-hydrocephalus-resources/] Transitioning from Pediatric to Adult Care: https://www.hydroassoc.org/transitioning-from-pediatric-to-adult-care/ [https://www.hydroassoc.org/transitioning-from-pediatric-to-adult-care/] Transitioning to Independence: https://www.hydroassoc.org/transitioning-to-independence/ [https://www.hydroassoc.org/transitioning-to-independence/] Learn more about hydrocephalus: https://www.hydroassoc.org [https://www.hydroassoc.org/] Request a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform [https://docs.google.com/forms/d/e/1FAIpQLSc8ixosshZ85SAWbsfasMc5UR7RSfEZDx5WFrNNAjfM3bII0g/viewform?usp=sharing&ouid=105815449341885032024] Follow on Instagram: @taishaycameron [https://www.instagram.com/taishaycameron], @hydroassoc [https://www.instagram.com/hydroassoc/]

Understanding Hydrocephalus: A Conversation with Pediatric Neurosurgeon Dr. Ramin Eskandari

What is hydrocephalus? How is it most commonly treated? And what should families know about living with this complex neurological condition? In this episode we’ll hear from Dr. Ramin Eskandari, a leading neurosurgeon, about the realities of hydrocephalus care. We discuss: * What hydrocephalus is and how it affects patients * The most common treatment options, including shunts and ETV * Warning signs of shunt malfunctions * New research and advances in treatment * The debate on activity restrictions for patients with hydrocephalus * Developmental, psychological, and psychiatric concerns for patients and caregivers * Why improving quality of life matters just as much as quantity of life Whether you’re newly diagnosed, a longtime caregiver, or simply looking to better understand hydrocephalus, this episode offers clarity, guidance, and hope from one of the field’s most experienced voices. HA Resources: Hydrocephalus in Infants and Children: https://www.hydroassoc.org/hydrocephalus-in-infants-and-children/ [https://www.hydroassoc.org/hydrocephalus-in-infants-and-children/] Shunt Systems: https://www.hydroassoc.org/shunt-systems/ [https://www.hydroassoc.org/shunt-systems/] Complications of Shunt Systems: https://www.hydroassoc.org/complications-of-shunt-systems/ [https://www.hydroassoc.org/complications-of-shunt-systems/] Shunt Malfunctions FAQ: https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/ [https://www.hydroassoc.org/shunt-malfunctions-frequently-asked-questions/] Endoscopic Third Ventriculostomy (ETV): https://www.hydroassoc.org/etv-and-etv-with-cpc/ [https://www.hydroassoc.org/etv-and-etv-with-cpc/] Emerging Technology: https://www.hydroassoc.org/emerging-technology/ [https://www.hydroassoc.org/emerging-technology/] Newly Diagnosed - Next Steps: https://www.hydroassoc.org/whats-next-newly-diagnosed/ [https://www.hydroassoc.org/whats-next-newly-diagnosed/] Essential Guide: Developmental Milestones in Hydrocephalus: https://www.hydroassoc.org/developmental-milestones-in-hydrocephalus/ [https://www.hydroassoc.org/developmental-milestones-in-hydrocephalus/] Individualized Education Program (IEP): https://www.hydroassoc.org/individualized-education-program/ [https://www.hydroassoc.org/individualized-education-program/] Consensus Statement on Physical Activities for Children with Hydrocephalus: https://www.hydroassoc.org/staying-active/#:~:text=Statement on Physical-,Activities,-for Children with [https://www.hydroassoc.org/staying-active/#:~:text=Statement%20on%20Physical-,Activities,-for%20Children%20with] Staying Active: https://www.hydroassoc.org/staying-active/ [https://www.hydroassoc.org/staying-active/] Emotional Well-being: https://www.hydroassoc.org/emotional-well-being/ [https://www.hydroassoc.org/emotional-well-being/] RAISE Resilience Program: https://www.hydroassoc.org/raise-resilience-program/ [https://www.hydroassoc.org/raise-resilience-program/] Research HA Funds: https://www.hydroassoc.org/research-we-fund/ [https://www.hydroassoc.org/research-we-fund/] Research Priorities: https://ww [https://www.hydroassoc.org/research-priorities/] Learn more about hydrocephalus: https://www.hydroassoc.org [https://www.hydroassoc.org/] Request a Hydro Hero shoutout on the show: https://bit.ly/hydroheroform [https://docs.google.com/forms/d/e/1FAIpQLSc8ixosshZ85SAWbsfasMc5UR7RSfEZDx5WFrNNAjfM3bII0g/viewform?usp=sharing&ouid=105815449341885032024] Follow on Instagram: @taishaycameron [https://www.instagram.com/taishaycameron], @hydroassoc [https://www.instagram.com/hydroassoc/]