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
Tag: OI awareness
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
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)
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 a disability. 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
Big Milestone
No one ever said he wouldn't walk.... No one ever said he wouldn't crawl. Most have said, "We don't know." The only thing scarier than the unknown... .... scarier than the not-knowing of how a future will play out... ... how our son's life will unfold.... .... whether he will live a full and purposeful… Continue reading Big Milestone
Diagnosis during pregnancy 