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Extra To Love: A Trisomy Podcast
extratolove.org
33 episodes
7 months ago
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 ...
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Parenting
Kids & Family
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All content for Extra To Love: A Trisomy Podcast is the property of extratolove.org and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
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 ...
Show more...
Parenting
Kids & Family
Episodes (20/33)
Extra To Love: A Trisomy Podcast
Ep 214: Anna, The Birthday Girl! (Trisomy 13)
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 ...
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1 year ago
54 minutes

Extra To Love: A Trisomy Podcast
Ep 213: An Honest Marriage Chat with Matt and Jenn (Trisomy 18 Parents)
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 p...
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1 year ago
40 minutes

Extra To Love: A Trisomy Podcast
Ministry Moment: Faith Is A Command!
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 suppor...
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1 year ago
7 minutes

Extra To Love: A Trisomy Podcast
Ep 212: Journey For Jazz (Trisomy 18)
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 th...
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1 year ago
1 hour 12 minutes

Extra To Love: A Trisomy Podcast
Ep 211: All About Communication with Audrey and Olivia! (ST)
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 T...
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1 year ago
50 minutes

Extra To Love: A Trisomy Podcast
Ministry Moment: Blessed Is The One Who Perseveres
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, co...
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1 year ago
5 minutes

Extra To Love: A Trisomy Podcast
Ep 210: Evie, Held For a While, Loved For a Lifetime (Trisomy 13)
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 aim...
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1 year ago
34 minutes

Extra To Love: A Trisomy Podcast
Ministry Moment: God is Our Strength
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, supp...
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1 year ago
6 minutes

Extra To Love: A Trisomy Podcast
Ep 209: Physical Therapy is Awesome! With DPTs Kaitlyn and Rianna
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 ...
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1 year ago
59 minutes

Extra To Love: A Trisomy Podcast
Ministry Moment: Created For Community
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 stori...
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1 year ago
5 minutes

Extra To Love: A Trisomy Podcast
Ep 208: Mia Polacek and Edwards Syndrome Association (Trisomy 18)
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. ...
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1 year ago
50 minutes

Extra To Love: A Trisomy Podcast
Ministry Moment: Gratitude In All Circumstances
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 suppo...
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1 year ago
7 minutes

Extra To Love: A Trisomy Podcast
Ep 207: Let's Talk Home Nursing with Nurse Tomi
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...
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1 year ago
1 hour 4 minutes

Extra To Love: A Trisomy Podcast
Ministry Moment: Considering Joseph on This Father's Day
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 organ...
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1 year ago
6 minutes

Extra To Love: A Trisomy Podcast
Ep 206: Kora, The Kindergarten Graduate! (Trisomy 13)
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 stori...
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1 year ago
50 minutes

Extra To Love: A Trisomy Podcast
Ministry Moment: Doing God's Work
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 ...
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1 year ago
6 minutes

Extra To Love: A Trisomy Podcast
Ep 205: Trisomy Grandmother; It Starts With Yes
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 tris...
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1 year ago
45 minutes

Extra To Love: A Trisomy Podcast
Ministry Moment: Starting Your Prayer Life
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...
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1 year ago
8 minutes

Extra To Love: A Trisomy Podcast
Ep 204: Speaking Life Over Eloise (Trisomy 18)
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,...
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1 year ago
1 hour 4 minutes

Extra To Love: A Trisomy Podcast
Ep 203: Siblings of Children with Trisomy
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 s...
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1 year ago
48 minutes

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 ...