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 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
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
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
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!
Brave and strong: Niko grows, 3 months and another Pamidronate infusion
Niko's 3rd and 4th months are filled with his first Hallowed, his second Pamidronate treatment and his first Thanksgiving! Although in a whirlwind of moving, kids, holidays, and all things OI, I start to welcome normalcy... our "new" normal.
Diagnosis during pregnancy 