PODCAST · kids
Speak life for Trisomy 18
by Meredith Willard
Life, love, joy, challenges and medical parenting . Medical Parents Raise Miracles.
Episodes
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How and when do I get fair care for my trisomy 18 or 13 child
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.
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Cooperate with your care and even to transfer we need to cooperate with unfair care to get out!
Cooperate. Know your unit director, your case manager, social worker, charge nurse, social worker, consults, and their team.
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I will not pity you
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.
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How Roses first few months of life impacted me as a mom and wife
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…
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Full care and full code is not cruel. Trigger warning.
Intensive medical
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The power of the Holy Spirit as you seek full fair care for Trisomy 18
Power of the Holy Spirit
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Other side of fear
Helping our kids
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Speak life for Rare Trisomy! Let’s get fair care for our kids. Kace strong, RIP sunshine
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...
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We must find our calm as a medical mom (or sad)
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.
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Pastor Brian belle Calvary murrelet a
Pastor Brian
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Why do they tell us our kids can’t live?
What we need from prenatal care, each other and to know about t 13 and t 18.
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Heart repair consults get them
If you have a rare trisomy child who has a CHD (heart complication) get consults. now! Always!
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How do I ask for full care and when
When do I ask for fair care? Full care? And what do I do?
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Children are the future.
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!
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Home Grown (part 2 of home scary home)
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!
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Home scary home: discharge from the nicu
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!
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How can you tell a baby need glasses?
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!
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Newly Diagnosed Family!
Welcome, and congratulations! A hello, and a few suggestions and resources. Please share with all new parents!
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“What’s wrong with her, will she walk, talk, eat...pass the chips”
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!
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Feeling isolated as a medical parent
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.
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“That’s my Baby...the one you spit upon”
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”.
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Segment one :Challenges bring talents. Segment two: challenges need Grace
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.
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G tube rap
Children can eat by mouth even with A g tube!
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Speak Life: Asserting my Babies Rights
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.
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Three Things I learned that helped save Roses life
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…
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Medical Parents raise miracles
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.
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Frequently Asked Questions
How many episodes does Speak life for Trisomy 18 have?
Speak life for Trisomy 18 currently has 26 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Speak life for Trisomy 18 about?
Life, love, joy, challenges and medical parenting . Medical Parents Raise Miracles.
How often does Speak life for Trisomy 18 release new episodes?
Speak life for Trisomy 18 has 26 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to Speak life for Trisomy 18?
You can listen to Speak life for Trisomy 18 on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Speak life for Trisomy 18?
Speak life for Trisomy 18 is created and hosted by Meredith Willard.
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