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
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
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)
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 for Niko
I never knew what a Nuk brush was until I learned it from Niko. Our occupational therapist introduced it to us when we started building Niko's tongue muscles. We started with stroking motions of the sides of his mouth and now he chews it independently. Since Niko was born with a broken arm, his left… Continue reading Niko and the Nuk brush
In Niko's first 2 months of life, he had his first surgery and his first Pamidronate infusion! This is a treatment for Osteogenesis Imperfecta, and Niko will get it for as long as he is growing.