Inside the Children's Hospital

Episode 10 features an interview with Roxanne, a mom of three from San Antonio, Texas. Just after entering high school and an outstanding performance in a football game, Roxanne's eldest child, Rueben, began having high fevers and flu-like symptoms. After about a week, his parents found him having a seizure and rushed him to the emergency room. They would soon learn that Rueben was diagnosed with viral encephalitis. Roxanne tells the story of their stay in the Pediatric ICU, what it was like balancing being there for Rueben in the hospital while having a newborn and another child at home, and how family played a major role in getting through some of their darkest times. Rueben's seizures continue after he returned home from the hospital, and during his sophomore year he was diagnosed with epilepsy which led to four invasive brain surgeries. Roxanne talks about what a critical role basketball was in Rueben's life prior to acquiring viral encephalitis and how he continues to show his determination in finding purpose while dealing with his illness. Roxanne wants parents to know that it is ok to vent, it is ok to ask questions and know that you are not alone. Roxanne and Rueben are advocates and aim to bring awareness to the rare disease that is encephalitis. Roxanne is currently in the works to bring an encephalitis walk to raise awareness in San Antonio. Roxanne says that Chris Maxwell has been instrumental in helping Rueben cope with his illness. She also suggests that families visit EncephalitisGlobal.org. If you would like to connect to Roxanne and follow along with Rueben's Journey, you can do so here on Facebook or Instagram. If you'd like more information or to share your own story, please email [email protected].

Episode 9 features an interview with Liz and Jamie. Shortly after Jamie was born, she developed a heart murmur and began passing out. Her mom, Liz, walks us through what it was like to witness such terrifying scenarios and how she began to become an advocate for her daughter. Despite being told that nothing was actually wrong with Jamie, Liz pushed harder and demanded tests that led them eventually to her diagnosis, Tetralogy of Fallot, a rare and serious heart defect. Years after the surgery to correct the defect, they'd come to learn that Jamie had been infected with HIV during a blood transfusion. Throughout this episode Liz talks about how she made some of her toughest parenting decisions: how to tell her child that she had the AIDS virus and how much information to give her. She talks about how she coped with not knowing how long her daughter would live for, experts had guessed it would be about two years. Unlike most childhood diseases and illness, there were no support groups for children with HIV and the stigma associated with it provoked fear in the public who didn't know much about the disease. Liz provides incredible insight on how she dealt with news that could have easily darkened her world and every day life - She says to think about the worst case scenario and be thankful for the here and now and to choose hope. Jamie shares her own experiences and memories surrounding how she kept her HIV a secret from her friends and classmates, and how her experiences at Hole in the Wall Gang Camp were a game changer for her and her confidence. Liz and Jamie live with a glass-half-full mentality and talk about their most personal conversations, their hardest experiences and how they find joy in the small celebrations and challenges of life. Jamie is the Child Life Director at Inova Children's Hospital and pursued the career based on the fact that her own experiences led her to want to support other patients and families going through their own medical journeys. Liz's advice to other parents going through their own experiences would be to advocate for your child, you know your child the best and you are the first line of defense. Jamie tells children and adolescents to ask questions and tell people what you need, build your support team, and become an advocate for yourself. Jamie credits her mom to being the reason she is alive today and says that without her, she wouldn't be loving life, living with her husband and talking about what she wants to do in her retirement. Liz tells us that Jamie chose hope. Medical science can leap frog over you, but choosing hope is what will get you through. I have excellent news for you, and that is if you wish you knew MORE about Jamie's experience about growing up with HIV, she has written a book! It is called "Surviving HIV: Growing Up a Secret and Being Positive" and you can buy this book on Amazon. Please follow along with Child Life On Call wherever you like to check your social media, Facebook, Instagram or Twitter, and if you have any questions you can always write to me at [email protected].

Episode 8 is Part 2 of Mandy and Nolan's story. If you haven't listened to Part 1, head on over to Episode 7 so you have a better understanding and appreciated for Mandy's story. I mentioned that Nolan was scheduled for surgery and I'm sure you're interested in an update… and this is directly from Mandy: The doctors were able to perform a scope of his airway to identify the obstruction that is causing the apnea; however, after getting a closer look at just how constricted his airway is, they decided they could not safely proceed with the surgery. We are now discussing a more involved approach to the surgery and exploring other options all together. We are disappointed but thankful to be working with a team of doctors so dedicated to finding solutions for our one in a billion patient. On this week's episode, we learn how incredible Mandy and Nolan are and how MadB does not define him as a child. Mandy talks honestly and candidly with us about what it's like to live with a child like Nolan and how the experience parallels emotions that she had in high school when she lost her mom to cancer. Mandy shares real stories about how others treat and react to Nolan, and she also talks about how incredibly adorable Nolan is and some of his favorite things: trucks, books, and a Bob Marley song. Mandy also gives incredible advice about what she and her husband do to cope and gives these suggestions for other families feeling isolated by an illness or diagnosis: 1) Go hug your child and keep loving them - the diagnosis doesn't define your child. 2) Try not to get too focused on the future, focus on making the most out of the present. 3) Don't go through it alone. 4) Learn everything you can about your child's diagnosis so you know that you've made the best decision you can. If you would like to reach out to Mandy, please message me and I will get you in touch with her through email. Thank you to Gruene Photography for the beautiful pictures of Mandy, Nolan and their family. We can't thank you enough for taking the time to give Mandy and her family these gorgeous photos that they will keep forever. If you are near New Braunfels or Gruene, Texas, go book Gruene Photography. Follow her on Instagram or Facebook. Thank you to Stephanie Sobic Gauthier for help in the storyline editing of this episode. Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email [email protected] or submit your information via the website childlifepodcast.com.

Episode 7 features the first part of Mandy's story. Her son, Nolan, was born five weeks early with a host of symptoms which led them to find that he was diagnosed with a condition that only four other people are currently living with. Nolan is the ninth person in the history of medical science that has been diagnosed with Mandibuloacral Dysplasia Type B (Mad B). In part one of Mandy's story, she talks to us about how doctors and specialists eventually came to diagnose Nolan. It ended up being an unsuspecting doctor appointment with a Dermatologist who had studied Progeria in medical school who wrote the diagnosis on a sticky note that led them to this rare condition. Part two of Mandy's story will be available next Monday morning when she talks about what living with a child who has Mad B is like, how undeniably amazing Nolan is, and how she and her family cope with it. Thank you to Gruene Photography for the beautiful pictures of Mandy, Nolan and their family. We can't thank you enough for taking the time to give Mandy and her family these georgeous photos that they will keep forever. If you are near New Braunfels or Gruene, Texas, go book Gruene Photography. Follow her on Instagram or Facebook. Thank you to Stephanie Sobic Gauthier for help in the storyline editing of this episode. Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email [email protected] or submit your information via the website childlifepodcast.com.

Episode 6 features Tricia, a mama who lives in the southwest suburbs of Chicago. Tricia bring a unique perspective and understanding of child development in her experience based on the fact that she has her masters in early childhood development and education, is currently an adjunct faculty member at Depaul University and is also a doula. In this episode, you'll hear Tricia talk about the fight of a lifetime to find a diagnosis for her daughter, Cora, who is now 13 years old. After four and a half years of countless doctors and very little sleep, Tricia learned that her daughter has Rolandic Epilepsy. If you are going through a similar experience, Tricia recommends getting in touch with the Epilepsy Foundation and finding a local chapter in your area. If you happen to live in the greater Chicago area, she also recommends Danny Did and Equip for Equality. If you'd like to get in touch with Tricia, you can do so via her email, Facebook or Twitter. Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email [email protected] or submit your information via the website childlifepodcast.com.

Karen had a typical pregnancy up until the last few scary days when she was unable to feel her daughter move. After following her mother instinct, Karen went to the hospital and quickly learned she would need an emergent c-section. As emergencies go, everything was unexpected. In this episode, Karen walks us through what her daughter's birth and subsequent NICU stay was like. She talks about the unknown's of her daughter's health as well as how difficult it was to be away from her in those first 48 hours. Karen shares with us how her husband and a dear friend who stayed at the hospital with her until 2 a.m. helped her cope, and encourages other mothers going through similar situations to know that they are not alone. If you would like to personally reach out to Karen, you can do so via Facebook or Instagram. Interested in sharing your story with our listeners? Get in touch with Katie here. Visit our website and connect with us on Facebook, Twitter and Instagram.

After arriving at her 20 week ultrasound, Abigail, her husband and mother were anxiously awaiting to hear the news of their first child's gender. However, the appointment took a turn when they learned that their son would be born with Spina Bifida. Abigail talks to us about that experience and their journey since that life changing moment. They'd come to learn that their son also had hearing loss and she talks about the challenges associated with it. Abigail expresses her feelings about Teak's diagnosis, talks about the incredible six (AND A HALF) year-old boy that he has become, and gives great advice to parents facing similar challenges. You can follow along and connect with Abigail through her blog, www.theheadhouseatx.com. She recommends connecting with a Spina Bifida group on Facebook, she specifically has benefited from meeting other parents here. She also spent a lot of time on BabyCenter's Spina Bifida group when Teak was born. Abigail also recommends the following resources: www.hearingloss.org https://www.livebinders.com/play/play?id=1666786 (This is the Texas Regional Day School for the Deaf and Hard of Hearing programs that Abigail referenced in her interview) If you would like to connect with Abigail, you can find her on Instagram or Facebook. She also blogs here and at Austin Moms Blog.

In this episode you will hear Kim talk about her experience in finding out that her son had Microtia Atresia, the interesting link to their family history and how that has affected her journey, and the tough decision about how and when to move forward with surgery. Microtia is a congenital deformity where the external ear is underdeveloped, and Atresia is the absence or closure of the external auditory ear canal. The malformation of the middle ear bones may be affected including the narrowing of the ear canal. This is a birth deformity that occurs in about 5,000 to 7,000 births. Kim recommends the following resources: Microtia.net Earcommunity.org Microtiasurgery.com Pedient.com If you'd like to connect with Kim, you can do so through her blog, The Hill Country Woman, through social media sites Facebook and Instagram, and she also blogs for Austin Moms Blog. A big thank you to the incredible photographer, Laura Morsman Photography for her beautiful pictures of Kim and her family for this episode. If you live in Austin… book Laura Morsman Photgraphy NOW. Take a look at the world's first swaddle for hospitalized infants, Woombie Med Pods, from Barski Vail Designs.

Michelle's story is one that took place over 15 years ago, and this is the first time she has spoken about it publicly. At the age of two, Brynn started developing inexplicable fevers which concerned her mother, an Emergency Room nurse. After trusting her gut that "something was wrong," Michelle brought her daughter in the middle of the night to the ER and shortly after was diagnosed with meningoencephalitis and in a coma for over a week. Michelle brings a unique perspective on relationships with healthcare providers, given the fact that she is and has been a nurse for over 18 years. You'll hear her talk about the benefits of building a trusting relationship with your child's pediatrician. She gives great advice about how to find that specific provider, and also talks about the importance of following your parental instincts. If you would like to connect with Michelle, you can do so here, Michelle on Facebook or through her email, [email protected]. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

After a long pregnancy on hospitalized bedrest, Kelli describes the birth and first year of her twin girls, one of which was born with two genetic conditions, Caudal Regression Syndrome and Goldenhar Syndrome. The journey to diagnose these conditions was a long one, and Kelli talks about what that process was like, and what is like to have a child with these two syndromes. Kelli recommends a several resources, www.isacra.com and the Goldenhar Syndrome Facebook group. Kelli also recommends rarediseases.org's network for a community of support and information on Goldenhar syndrome. If you would like to connect with Kelli personally, you can follow her on instagram at @kelita83, on her blog at www.babygruens.wordpress.com and at Austin Moms Blog. If you would like to share your story or have questions about this podcast, you can email [email protected] or submit your information on childlifepodcast.com. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

This is the first promotional episode for the Child Life On Call Podcast. If you would like to share your story, email us at [email protected], visit our website at www.childlifepodcast.com, or find us on Instagram @childlifeoncall. The first official podcast episode will launch in June 2017. Subscribe to be updated on our most recent episodes.