Extra to Love: A Trisomy Podcast

Published on Anna's 5th birthday, this episode features Megan DeRuiter, mom to Anna who has Trisomy 13. She discusses the confusion of Anna being given a poor prognosis despite presenting well, the impact of her healthcare background on her early journey and what she has learned about the Trisomy 13 community.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

In this episode of Extra To Love: A Trisomy Podcast, host, Jenn, and her husband, Matt, reflect on the impact of parenting a child with Trisomy 18 on their marriage over the past 6 years. They share their personal experience, lessons they've learned, ways they are still trying to grow and more. They also share the unique experience of navigating a trisomy diagnosis when one parent has experienced medical complexity and loss before with a child. Whether you are also navigating marriage while parenting a child with a trisomy diagnosis, or you are just embarking on this journey, there is so much community and wisdom to be found in this episode.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Are belief and faith the same thing? Listen as Julie compares the two, and discusses that God not only wants us to have faith, but commands it! Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Chelsi, mom of 5 year old Jazz who has Trisomy 18 (Edwards Syndrome), joins Extra To Love: A Trisomy Podcast to share her wisdom and perspectives on how Jazz's life has impacted their family, if this journey is worth it, the importance of connecting with the trisomy community and more. You definitely don't want to miss this episode! Follow Jazz's journey and connect with Chelsi on instagram @journey4jazz and Facebook: Chelsi Crawford  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

We are joined by Audrey Brock (M.S. CCC-SLP) and Olivia Lane (M.S. CCC-SLP) join us to share all about speech therapy, communication using AAC, and more. Although most people with Trisomy 18 or Trisomy 13 are non-speaking, that does not mean they are non-communicating. Communication can look many different ways, and speech therapists have a wonderful arsenal of tools to assist with that! Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

In this Ministry Moment, Julie shares on resilience and the call to persevere through trials. With an encouraging call to reframe our thinking, let this Ministry Moment give you a new wind to continue to be resilient through the obstacles you are facing.   Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

At Extra To Love, we are firm believers that a child's value is not based on the number of their days here on Earth. Evie, who had Trisomy 13 and lived 56 days, had an impactful, love-filled life. Evie's mom, Emily, shares about how their journey changed her, how she includes Evie in her baby sister's life, and her favorite memories shared with her daughter. Join us in remembering Evie and appreciating the special impact her life had.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

In this Ministry Moment, Julie provides the ever-empowering reminder - If God is for us, who can be against us? In God we are strengthened and equipped to face each challenge, with Jesus - the source of our strength - walking right beside us.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Our guests this week hold special meaning to ETL, as they have been the physical therapy providers for the kids of our ETL team members and have been cheerleaders for them every step of the way. In this episode, Rianna Silverstein, DPT and Kaitlyn Evers, DPT share their perspectives on their experience treating children with trisomy 18, discuss what to look for in a PT, explain the purpose of DMI, and speak to the power of intensive therapy. We hope you will feel encouraged by hearing the way these two amazing therapists champion the trisomy community and the abilities of children with a trisomy diagnosis. Disclaimer: The thoughts and opinions shared in this episode are personal perspectives and experience and are NOT meant to replace the guidance of your child's licensed healthcare and therapy providers. Please consult with your child's therapists and doctors for care specific to their needs.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

In this Ministry Moment, Julie encourages listeners to lean into community with the reminder that scripture repeatedly demonstrates the power of joining with others, especially in challenging times.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Jeanna Polacek, mom to 5 year old Mia who has full Trisomy 18 and co founder of Edwards' Syndrome Association joins Extra To Love: A Trisomy Podcast to discuss their surprising birth diagnosis, the milestones Mia has reached, the relationship Mia has with her baby sister, as well as the heart and mission of Edwards' Syndrome Association. We also discuss the intentionality behind choosing to use ‘Edwards Syndrome', following in the foot steps of the Down syndrome (trisomy 21) community. To connect with ESA visit edwardssyndrome.org or find them on social media @edwardssyndromeassociation Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

This week Julie discusses nurturing a spirit of gratitude and choosing to see God's hand in the midst of difficulties. If you are struggling to feel gratitude, let your challenge this week to be acknowledging your blessings. When you notice the good things in your life, even something like air conditioning in the summer heat, write it down or say thank you to God.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Home Health Nurse of 15 years and medical mom Tomi Moe joins Extra To Love: A Trisomy Podcast to share her perspective on how to identify and keep great nurses, realistic expectations for parents and more. Her experience being in many home as a nurse and also having nursing in her home for her child gives her unique and valuable insight to share. We know this is a subject that affects many families with trisomy diagnoses and we want to empower and equip families to have the best possible home nursing experience if they choose to utilize it.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

In this Ministry Moment, Julie considers Joseph's role in our saviors life, and how we can glean the importance of an earthly father from what we know about him. Like Joseph, man trisomy fathers are thrown into situations they never could have predicted. Faith in God empowered Joseph to not only accept the situation, but to be the husband Mary needed, and the earthly father Jesus needed. Happy Father's Day to all trisomy dads. You are seen and loved.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Kelly, mom of 5 year old Kora, who has Trisomy 13 (Patau Syndrome) joins us to share their story of ups and downs, and the beautiful life that Kora now leads as a big sister and almost-first-grader.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

In this week's Ministry Moment, Julie encourages listeners to remember that we are doing the Lord's work every day, and reminds listeners to consider Colossians 3:23-24 - in whatever you do, work as if you are working for the Lord. Caring for a child with disabilities such as those associated with Trisomy 13 and Trisomy 18 can be taxing and can lead to going through the motions to move from one task to the next. We hope this Ministry Moment encourages listeners to pause and consider the work they are doing, as well as the work of others.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

On this episode of Extra To Love: A Trisomy Podcast , we're talking to Jennifer Springer, Director of Operations for ETL. Jennifer is connected to the trisomy community through her granddaughter, Sage, who had trisomy 18. Jennifer talks about the choice to be the "village" that is needed to raise a child with disabilities, her love for the trisomy community and her passion for her role within ETL.  Jennifer shares wisdom for those who are close with a family expecting a child with a trisomy diagnosis, such as a grandparent or sibling to the child's mom or dad, and how they can speak life and hope into their story.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Julie Hawkins, Extra To Love Board Member and a Director of Children's and Family Ministry, begins a new feature on the ETL Podcast, Ministry Moments. It is our hope that each Ministry Moment provides the uplifting  encouragement you need to continue seeking God's face through uncertainty.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Lacey Ponder, mom of Eloise who lived 14 months and had Trisomy 18, discusses the shock of their birth diagnosis, the decision to focus on speaking life over her daughter, and how she finds comfort in the truths of the gospel as a bereaved mother.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

Families are often told to consider the burden their child with special needs will have on their neurotypical children. What better way to remove the stigma than to allow the opportunity for their siblings to speak on their experience! Five children ranging in ages 13 to 17 joined the Extra to Love podcast to discuss their prospective of having a sibling with Trisomy 18 and Trisomy 13. The teens get vulnerable with an inside look into their experience, they share about their joys and struggles with each other on this episode! Listen in to hear about the beautiful journey that is absolutely worth it to them!Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Audrey Mercier gives a glimpse into the life she has with her daughter, Cecilia "Cece" who has Partial Trisomy 13. She was vulnerable with her heart and journey.  She has just completed her first year of medical parenthood and is doing an incredible job! You can find her on facebook and instagram @reslilientmama_co.Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Emma, Jenn and Amber announce some exciting changes and goals for 2024 with services offer from Extra to Love. Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

"Though she be but little, she is fierce," describes Evalyn, more commonly known as "Nuggie" quite well. In this week's episode her mom, Amber, who is the host of the Extra to Love Podcast, tells the story of her birth diagnosis and life since then. Like many others, Nugget has continuously defied all of the odds set against her and impacted a lot of hearts along the way!Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Charity joins Emma and Amber on this episode to talk about the way she juggles her many hats and accomplishments. Charity has a heart to serve and give Maggie a life well lived and loved! The diagnosis her daughter has wasn't the end, but a beautiful revelation of things that really matter in life! Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Jenn, Emma, and Amber discuss the events and emotions leading up to the very emotional first birthday of their children with Trisomy. We are often told the chances of even getting one is slim to none, as the first has come to pass, they discuss what it feels like as each birthday for their child comes back around. Asher is a little boy who will be 5 soon, Sage just turned 3 and Evalyn is about to be 2!Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

The name "Journey" is the perfect name for a little girl who is described by her Mom as an answered prayer and a true blessing in her life! Listen in as her Mom, Deirdra tells the story of her birth, diagnosis, and the advocacy that has followed. Journey is a four year old girl who is quite the fashionista, and has a beautiful relationship with her sibling! Journey is pure sunshine and nothing short of an incredible testimony of God's Love! Deirdra is the first member of ETL's Parent Advisory Counsel and we look forward to sharing more from her!Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Amber, Jenn, and Emma discuss their experience with "Hospice/Comfort Care" measures. One of us skipped over it, the other was not given a choice and the last of us chose it! In this episode we discuss our vastly different experiences and what lead us to make the decisions we did. We discuss the importance of titration of the FIO2 for your child. Disclaimer: "Amber here, in this episode we do discuss death, I want to put a quick disclaimer that my ease of using the word "dead" in the episode came from my own healing of trauma. I was at a beautiful retreat where I had the honor of hearing Bethany Bernard play her newest album. She discussed, there is a terrible stigma around using the words "death, and dead." It took me 9 months to be able to say that my own daughter had died and not using that verbiage for me, minimized her story."Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Podcast Co-Host Jenn takes us through the journey of her own grief of loss and life with another medically complex child. Asher, is her four year old son who has Trisomy 18, the odds have been completely stacked against him from the beginning. Asher has done incredible and amazing things despite the statistics he was compared to! Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Charity Nelson tells the story of her pregnancy, birth and life with daughter Maggie who is 3 years old and has Trisomy 18 (Edwards Syndrome). With a trach and GJ tube and two fun siblings, Maggie's story demonstrates the way medical complexity and fullness of life can coexist. Charity shares how she has witnessed God in the details of Maggie's life and coming to terms with her diagnosis. Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Amber, Jenn and Emma sit down with Jenn's close friend, Laura, to discuss how raising a child with trisomy has impacted their friendship. The ladies have an insightful conversation regarding how to discuss medical complexities with typical children and how to be a supportive friend to someone with a disabled child.  Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

In this episode Kathryn discusses the impact her daughter's diagnosis had on her as a nurse and on her family. Indiana lived  for a brief moment in time but left a lasting impact on her family! Kathryn discusses the complications she had and all the things that make her daughter the blessing that she was. Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Emma, Jenn, and Amber discuss the current state of their marriages and the impact a special needs child has had on their relationships and friendships. Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

Emma Springer, founder and director of the Extra to Love organization tells the story of her daughter Sage. From birth to delivery and her life now as a mother, nurse, and the inspiration behind the organization that came to be! Experience with an Aortic arch repair, trache, Gtube and GJ tube! Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/

In this weeks Extra Caffeinated Mom's segment, Amber, Jenn and Emma reflect a bit on statistics, and whether or not they are accurate. They also share a peak into their kid's stories by talking about the accessories they have. So grab whatever fuels you, and join these extra caffeinated moms as they premier the Extra to Love Podcast.If you are a family in need of assistance please email us at info@extratolove.org, you can find us on social media under Extra to Love to see what we are doing! If you would like to sponsor an episode please reach out to podcast@extratolove.org or if you would like to make a donation to assist families who are needing to travel for care for their child please go to our website at extratolove.org and make a donation!Our Website and Social's are listed Below!https://www.extratolove.org/https://www.facebook.com/ExtraToLove/https://www.instagram.com/Extratolove/