Pediatric Neurologist, Dr. Sean Goretzke, shares his approach to navigating complex treatment options and quality of life.

In this week’s episode, we hear from Dr. Sean Goretzke, a Pediatric Neurologist and Division Director of Child Neurology Services at Cardinal Glennon Children’s Hospital, where he has a special interest in managing children with concussions and cerebral palsy. Dr. Goretzke is also an assistant professor of Pediatric Neurology in the Department of Neurology at Saint Louis University School of Medicine.

Dr. Goretzke is the father of six kids. I can say with certainty that this has greatly influenced his relatable style when practicing medicine, which he shares more about in this episode. We touch on various subjects, from navigating difficult medication decisions, comfort measures, quality of life discussions, and the social inequalities impacting healthcare and medicine.

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Music by amiina

Cover art by Kendall Bell

Shana Metsch details her battles with Medicaid for a variety of items that her disabled daughter needs: nursing, equipment, and supplies.

In this week’s Afterthoughts episode, I am joined by my friend and fellow medical mom, Shana. We first connected a little over a year ago when she offered her personal insight into the process of obtaining a ceiling track lift for our home. In Shana’s 15 years of providing in-home care to her daughter Hannah, she has fought and prevailed in a number of insurance battles, including the ceiling lift. Shana graciously offers us some extremely helpful information to ensure that families like our own are empowered to fight and prevail in similar battles with insurance/Medicaid.

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Music by amiina

Cover-art by Kendall Bell

Amanda Kaufman, MSW with DSCC, shares her mission to help assist families of children with special health care needs.

In this week’s episode, I am sharing my conversation with Amanda Kaufman, MSW, who previously worked closely with our family through an organization called the Division of Specialized Care for Children (DSCC). Amanda does a great job explaining her role in DSCC and their mission to help assist families of children with special needs.

(UIC) Division of Specialized Care for Children

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Music by amiina

Cover art by Kendall Bell

Transcription provided HERE

Research can be found HERE

Two medical moms, Erica Stearns, and Jenny Park, discuss the taboo: difficult decisions, unspoken thoughts, and unusual means of comfort.

This is a new version of an "Afterthoughts" episode. This episode includes four different outtakes of conversations I had with Jenny Park from last week’s episode, “Love Needs No Words.” This episode contains some snippets of our discussion, parts that I edited out not because they lacked importance. These pieces range from goofy/profound, light/heavy, and casual/intimate. We discuss the Disney songs that get stuck in our heads, the difficult decision to pivot careers, our kids' role in research, medicine, and science, the ability to communicate without words, and the struggle of navigating anticipatory grief. These outtakes were incredibly vulnerable and revealing and stood out on their own. I will simply be separating them with fragments of music between each. If you listened to the previous episode, you would likely be able to tell what topic we were discussing, which led to these outtake conversations. Jenny's account of the story and journey of Josie's life can be followed on Facebook HERE.

Be sure to visit our Website for transcription and Shop for Atypical Truth swag!

Music by amiina

Cover art by Kendall Bell

Transcription provided HERE

Research can be found HERE

Jenny Park shares with Erica Stearns what her daughter's rare condition has taught her as a mother and educator.

"Love needs no words" - Somehow, those four words have perfectly captured one of the biggest lessons our children have taught us. I am excited to share this glimpse into the life of my fellow medical mama, Jenny Park. Jenny has a magical way of putting words to the indescribable essence of our children. I cannot think of a better way to honor Mother's Day than to share this episode with you! Jenny account on the story and journey of Josie's life can be followed on Facebook HERE

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Music by amiina

Cover art by Kendall Bell

Two medical moms, Abigail Tanner, and Erica Stearns, swap vulnerable stories about home health nursing for their medically complex children. There is a lot of laughter and vulnerability as they both discuss the awkwardness and the blessing of having the help of a home health nurse. 

Abby's son Lincoln's Facebook page, Lincoln's Road, can be found HERE

Justin and Abby's business, The Board Collection, can be found HERE

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Music by amiina

Cover art by Kendall Bell

Home health nurse, Amelia Mohr, shares her perspective on what it is like to be a home health nurse for families with medically complex children. We discuss everything from navigating that decision, what to expect in your first meeting with a nurse, what to expect when the nurse is hired, and essential conversations with your family, and your nurse.

If you have ever been faced with the decision to consider home health nursing for a loved one, this is the episode for you! In this episode, I cover all the hard stuff with my special guest Amelia, who also happens to be our home health nurse. Amelia has been with our family since we first opened the door to the idea of home health nursing. We discuss everything from how to navigate making that decision, what to expect in your first meeting with a nurse, what to expect when the nurse is hired, and important conversations to have with yourself, your family, and your nurse. It is fascinating to get Amelia's perspective of what it is like to be a home health nurse for families with medically complex children. As I say in this episode, I really wish I had something like this, well, anything really, to help prepare me for this chapter of our lives. I am hopeful that this will help others who may be considering home health nursing for their own family.

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Music by amiina

Cover art by Kendall Bell

Erica Stearns details her experience of having to rebuild her trust with medical professionals after the events of her first birth.

The events leading up to meeting Dr. Tanios serve as an example to Erica of how her trust was broken and regained. Details, including the traumatic events that occurred during Erica's first birthing experience and the days that followed, will be shared.

"Afterthoughts"  interviews were recorded approximately a month after the preluding interviews were published. This allows for plenty of time for thoughts and feelings to marinate following each conversation. 

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Music by amiina

Cover art by Kendall Bell

Dr. Aline Tanios, Pediatric Physician, discusses her role in the Complex Medical Care career and her hopes for the future of medicine.

Dr. Tanios established the Complex Care Medical Program at Cardinal Glennon Children's Hospital in St. Louis, MO, where she now serves as the Medical Director for inpatient services. Dr. Tanios provides a glimpse into her life as she shares with us what led her to become a physician, her passion for working with children who have complex medical conditions, her approach to establishing trusting relationships with patients/families, and her hopes for how our society can work together to improve the lives of those faced with complex conditions. Dr. Tanios delivers a well-rounded, rarely shared perspective as a physician, mother, and friend.

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Music by amiina

Cover art by Kendall Bell

Erica Stearns reflects on life growing up with a tracheostomy and disabilities, preparing her to become a caregiver and advocate.

Learn more about Erica Stearns as she provides a glimpse into her life, childhood, parenthood, and her reasons for showing up to this podcasting platform now! 

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Music by amiina

Cover-art by Kendall Bell