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)

Christmas

Baby’s 2nd Christmas: A Meaningful Milestone

This holiday will be filled with lights, glitter, colors, festivities, gathering, love and celebration... ... not without moments of worry, but with just a little less than ever before... ... a time to remember those who have passed, and to also remember just how far... we have come... This Christmas, I will feel just a… Continue reading Baby’s 2nd Christmas: A Meaningful Milestone

Niko Gian

October is Dwarfism Awareness Month

"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

Children · Faith · Family · joy · Niko Gian · Uncategorized

Big Milestone for Niko

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

Children · Faith · Family · Niko Gian · Uncategorized

A Summer to Celebrate

"You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete." ~ Buckminister Fuller, inventor and visionary. We are asked to step into a new and exciting time. What a beautiful opportunity it is to be on earth now. What powerful beings we are… Continue reading A Summer to Celebrate

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