Osteogenesis Imperfecta · Prenatal Diagnosis

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

Fear · Prenatal Diagnosis

Prenatal diagnosis + global pandemic

How is our experience eerily familiar.... The diagnosis 2020 has been both challenging and carrying an energy of something larger than we ever thought possible. When we realized our world was about to change as we knew it... there were a range of emotions... shock... denial... sadness, anger, fear.... lots and lots of fear. And… Continue reading Prenatal diagnosis + global pandemic

Breaking the habit of being yourself · Dr. Joe Dispenza · love · self help · Self-Care · Shadow Work · spirituality · The Wisdom of Anxiety

Transitions, grief and the wisdom of anxiety

"Most people struggle to some degree through the major milestones in life -- kindergarten, adolescence, graduating from high school and going away to college, graduating from college, starting a career, getting married, having a baby, buying a house. Those who are more sensitive, because they're acutely aware of the fleeting and ephemeral nature of life… Continue reading Transitions, grief and the wisdom of anxiety

Advocacy · Occupational therapy · Osteogenesis Imperfecta · Speaking

Keynote Speaker : University of Pittsburgh Health and Rehabilitation Sciences Recognition Day Ceremony

December 14, 2019, I had the honor and privilege of presenting as the Keynote Speaker for the University of Pittsburgh's Health and Rehabilitation Sciences Fall Recognition Day Ceremony, representing both the OI community and Clarion University. The majority of graduates were from the Physicans Assistant program, and others were from Speech Pathology, OT, PT, Audiology,… Continue reading Keynote Speaker : University of Pittsburgh Health and Rehabilitation Sciences Recognition Day Ceremony

Osteogenesis Imperfecta · pregnancy · Prenatal Diagnosis

A New Conversation: Prenatal diagnosis, Genetics, Rare + the 20-week Anatomy Scan

"This was the gut-dropping, body-numbing moment…. this was the moment that we can refer to as the moment…. where there is a before this moment… and an after this moment…. this is the moment that divides… that creates the before photos… where I look at myself and think, “Oh, that’s the woman who she was before everything… Continue reading A New Conversation: Prenatal diagnosis, Genetics, Rare + the 20-week Anatomy Scan

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 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

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