Speak life for Trisomy 18

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 diagnosis for rare trisomy there is joy, purpose and our children deserve fair care

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