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
"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
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)
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
16 great toys that have served Niko well in his first 16 months! PT and OT approved.
"I think he has a form of Dwarfism." This was the moment it all started getting blurry for me. During our follow up ultrasound, at 20 weeks pregnant, our doctor said these words to us. Shock, confusion, curiosity and denial flooded waves over us. I wondered how anyone could tell with such certainty that this… Continue reading October is Dwarfism Awareness Month
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
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