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)
Tag: OI
9 Things I’d Love to Share with Occupational Therapy Students
I recently spoke on a parents panel at a local university, speaking to students in an OT program about working with an OT and having a child with special needs. I'd like to share the following, as it pertains to pediatric occupational therapy. The Early Intervention (EI) program and our team of therapists have changed our… Continue reading 9 Things I’d Love to Share with Occupational Therapy Students
Orange Socks: Inspiring Life Despite a Diagnosis
Last weekend, our family was interviewed by the President of Orange Socks, and we couldn't be more grateful for the opportunity to share our story. March 1, 2017, we went in for a routine ultrasound appointment, the 20 week anatomy scan. After 45 minutes of checking measurements, the ultrasound technician said, "I need to call… Continue reading Orange Socks: Inspiring Life Despite a Diagnosis
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 grows strong
{New blog} Niko grows strong and continues to show us physical strength and a joyful spirit that is unbreakable!
Protected: Born Fragile Yet Strong: The Story of Our Son, Niko Gian Francis Part 1
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Diagnosis during pregnancy 