Niko Gian · Osteogenesis Imperfecta

Pamidronate treatment

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

Osteogenesis Imperfecta · Prenatal Diagnosis

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)

Children · Faith · Family · joy · love · Niko Gian

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

Children · Christmas · Faith · Family · Holidays · Niko Gian

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