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.