Niko Gian · Osteogenesis Imperfecta

Pamidronate treatment

Pamidronate //::  in the bisphosphonate family, a class of drugs that prevent the loss of bone density. "Previous studies of OI bone have suggested that abnormal activity of osteoclasts and osteoblasts (the cells that form new bone) contribute to the bone's fragility. In normal bone, the osteoblasts are producing new, healthy bone to replace the older bone… Continue reading Pamidronate treatment

Osteogenesis Imperfecta · Prenatal Diagnosis

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)

Faith · Fear · joy · parenting · pregnancy · Prenatal Diagnosis

Running out of the darkness: How a song about Jesus reminded me of who I am

Even knowing Jesus as a child, and growing a relationship with God as an adult... when tragedy and uncertainty strike, surrender boot camp begins. Tuning into this type of surrender changed me. .... letting go, and leaning in. ... this has transformed the way I feel into all experiences, relationships, interactions, how I raise my… Continue reading Running out of the darkness: How a song about Jesus reminded me of who I am

Niko Gian · Occupational therapy · Osteogenesis Imperfecta

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┬ápediatric 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

joy · Prenatal Diagnosis

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

Christmas

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