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)
Tag: Babies born with Osteogenesis imperfecta
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 and the Nuk brush
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
Niko grows strong
{New blog} Niko grows strong and continues to show us physical strength and a joyful spirit that is unbreakable!
Niko’s first Christmas already and his first mama’s birthday
Every week we meet with PT and OT, it seems Niko is doing something he hasn't done before... whether it be using his arm just a little more, reaching just a little higher, straightening his legs just a little more... his subtle changes grow until they are just part of the normal. Niko started grabbing… Continue reading Niko’s first Christmas already and his first mama’s birthday
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.
Protected: Born Fragile Yet Strong: The Story of Our Son Niko Gian Francis Part 2
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Diagnosis during pregnancy 