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 s…

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 list…

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/על ידי Extra to Love

"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 …

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:/…

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 …

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…

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. Di…

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 So…

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 lif…

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 list…

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! h…

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/על ידי Extra to Love

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.…

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 f…

You need a care plan, referrals to fair care and consults to have fair care. Goal is to meet medical needs, stabilize, consult, intervene. From respiratory support to surgeries. How to assert your child’s needs for medical fair care.

Cooperate. Know your unit director, your case manager, social worker, charge nurse, social worker, consults, and their team.

Having a child with medical complexities and developmental delays is hard, but no need for pity. With this great task, it is the steadfast hope and long suffering that bring peace amongst the challenges.

Having a medical fragile child requires hours and days to months and for some years, in medical ic setting. There is much to learn, do and fight for as well as tend to the child. This is how I had to step away from some roles and ask for grace as I learned how to bring us all into our new life with the newest member…

Intensive medical

Power of the Holy Spirit

Helping our kids

Who do you look to for support and information on caring for and loving a child with Rare Trisomy? Medical care has its place. But they don’t know this life, if they do they help. Your child deserves those who can and will help. Kace a dear friend passed away and his two years of life is a testimony to the purpose and joy of life, even with a diagn…

The fatigue, fear and work of being a medical parent can rob us of enjoying this earthly life, we must calm and care for ourselves and then offer a calm and peace to our children as we help them live a earthly life.

Pastor Brian

What we need from prenatal care, each other and to know about t 13 and t 18.

If you have a rare trisomy child who has a CHD (heart complication) get consults. now! Always!

When do I ask for fair care? Full care? And what do I do?

All my children have a future in them. Glimpses of their personality and gifts come often. What a joy to see what they can become and do as they join Society, my dAugnter with t 18, she will too!

To finish the pod cast “home scary home” coming home from hospital life can be a hard transition, but also a time for growth. The transition is hard, but you can do it!

When the time came to head home from the nicu I felt scared and it was hard.I can say now, it was worth it!

Rose wears glasses! How did we know she needed them? How did we get her prescription? How has she done with them? Let me tell ya!

Welcome, and congratulations! A hello, and a few suggestions and resources. Please share with all new parents!

When interacting socially the question “what’s wrong with your child “ or stares or medical curiosity can hinder our time engaging in fun and social life!

The early times of medical parenting can feel isolating and confusing. Like being put in a foreign county or parallel universe, you need time to adjust and integrate your “old” ways with the current life.

A song by Lindsey Tucker (who gave me permission to use the song) talks about Mary the “highly choosen one” speaking out about the task of loving her baby that there “wasn’t room” for, “spit upon” and how she is the “highly chosen one”.

Segment one: How to find ones talent in a challenge and examples I have had. Segment two: The three things that help doing things that make us anxious.

Children can eat by mouth even with A g tube!

When Rose was three weeks old, our full medical intervention plan for Rose was not being honored. I discuss how “speak life” helped me find my voice as her advocate and helped me cope with my anger and frustration.

Hello, in this episode I discuss the diagnosis , pregnancy and neonatal time for Rose. This is a combination of personal experiences and feelings and what actions I took that I feel helped save her life. I hope it encourages you on your own journey and I am very excited for all that is to come for you! Anyone facing medical challenges this could be…

As a mother of a child with the diagnosis of trisomy 18 I am eager to share that their is life for those who are told their condition makes them incompatible of life and interventions for life denied to them. We are here to share our story, our journey and our joy, faith and love for our child.