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
Tag: osteogenesis imperfecta baby
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
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
Protected: Born Fragile Yet Strong: The Story of Our Son Part 1
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Diagnosis during pregnancy 