This summer I gave a virtual lecture for University of Pittsburgh students in the School of Health and Rehabilitation Sciences PA program - section on genetics. This presentation addresses my personal experiences, pre and post natal, as well as the use of lethal language as it relates to inaccurate information and directive care. Call it… Continue reading Lecture for University of Pittsburgh students on parent experience related to prenatal diagnosis
Tag: baby with osteogenesis imperfecta
Osteogenesis Imperfecta: New Diagnosis Toolkit
I'm proud to have partnered with the OI Foundation in presenting this document for families and medical providers. new-diagnosis-toolkitDownload "Congratulations on your new baby and welcome to the OI family! The Osteogenesis Imperfecta Foundation is pleased to offer Newly Diagnosed:A Tool Kit for Parents to help you navigate the many questions you may haveduring this… Continue reading Osteogenesis Imperfecta: New Diagnosis Toolkit
Why it is inappropriate, unethical and negligent to diagnose a baby in utero with a lethal form of Osteogenesis Imperfecta (OI)
With the expansion of prenatal genetic testing, must come the expansion of dialogue as it relates to the ethical ramifications of prenatal diagnosis. I am not a medical professional, nor a genetic specialist. I am the parent of a child with Osteogenesis Imperfecta (OI), a rare genetic condition. I am a woman and patient… Continue reading Why it is inappropriate, unethical and negligent to diagnose a baby in utero with a lethal form of Osteogenesis Imperfecta (OI)
Baby’s 2nd Christmas: A Meaningful Milestone
This holiday will be filled with lights, glitter, colors, festivities, gathering, love and celebration... ... not without moments of worry, but with just a little less than ever before... ... a time to remember those who have passed, and to also remember just how far... we have come... This Christmas, I will feel just a… Continue reading Baby’s 2nd Christmas: A Meaningful Milestone
Developmental Toy Gift Guide for a Baby You Love: 16 ideas for the first year+
16 great toys that have served Niko well in his first 16 months! PT and OT approved.
October is Dwarfism Awareness Month
"I think he has a form of Dwarfism." This was the moment it all started getting blurry for me. During our follow up ultrasound, at 20 weeks pregnant, our doctor said these words to us. Shock, confusion, curiosity and denial flooded waves over us. I wondered how anyone could tell with such certainty that this… Continue reading October is Dwarfism Awareness Month
Niko is almost 1 + 6th infusion
Niko will be 1 next week! Can you believe it!? 26 fractures at birth 13 hours of labor for mom 6 IV infusions 5 days in the NICU 4 prenatal ultrasounds  3 siblings who adore him 2 parents who are beside themselves with his presence 1 big birthday boy + 923 miles to Omaha and… Continue reading Niko is almost 1 + 6th infusion
Niko and the Nuk brush
I never knew what a Nuk brush was until I learned it from Niko. Our occupational therapist introduced it to us when we started building Niko's tongue muscles. We started with stroking motions of the sides of his mouth and now he chews it independently. Since Niko was born with a broken arm, his left… Continue reading Niko and the Nuk brush
Niko grows strong
{New blog} Niko grows strong and continues to show us physical strength and a joyful spirit that is unbreakable!
Niko’s first Christmas already and his first mama’s birthday
Every week we meet with PT and OT, it seems Niko is doing something he hasn't done before... whether it be using his arm just a little more, reaching just a little higher, straightening his legs just a little more... his subtle changes grow until they are just part of the normal. Niko started grabbing… Continue reading Niko’s first Christmas already and his first mama’s birthday
Diagnosis during pregnancy 