Anyone who knows Emerson knows what a loving heart he has, which makes him a very sweet and patient big brother who is always willing to help out. Colbie LOVES wrestling and playing with him so much and they really are adorable together! I often hear him making her giggle in the car and sheContinue reading “Super Colbie!”
Category Archives: Uncategorized
Colbie’s Lullaby
We often joke that Colbie likes her big brother Dominic more than any of us, but she has a way of making each of us feel special. Either way there is no doubt that he adores her just as much. The other day, Dominic said to me, “Mom, I didn’t cry when you first toldContinue reading “Colbie’s Lullaby”
This is Real.
How do you accept being told your child may not walk, and if they do, they may still lose that ability? That there is no way to stop what could happen to her? That she could experience optic nerve atrophy and potentially lose her vision. That spastic paraplegia, which could be painful, is a strongContinue reading “This is Real.”
How Did We Get Here?
Since sharing about Colbie’s KAND (KiF1A Neurological Related Disorders) diagnosis, there of course has been a lot of people asking about how we came to discover it. In addition to this, I am explaining to new doctors and researchers what the year leading up to this looked like. I have kept track in a spreadsheet,Continue reading “How Did We Get Here?”
Colbie’s KiF1A Diagnosis
This post may be a mess. I may come back and rewrite it 100 times even after it is posted. I didn’t know if I should write it even. How to share “the news?” I process things by talking through them, and this, I kind of hate talking about right now, so writing seemed toContinue reading “Colbie’s KiF1A Diagnosis”
Care for Colbie 