16 great toys that have served Niko well in his first 16 months! PT and OT approved.
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
Big Milestone
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
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
What’s light got to do, got to do with it?
“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing… Continue reading What’s light got to do, got to do with it?
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.