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
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 special needs. 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
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
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
"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
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