Father-daughter dance practice
Namine and I had our first dance practice together.
caudal regression syndrome
Sacral agenesis, lumbosacral agenesis, and caudal regression syndrome are three terms that are often used interchangeably. Sacral agenesis refers to a condition in which the sacrum (the lowest portion of the spine that forms the joint with the hips) fails to form (agenesis) during fetal development. Lumbosacral agenesis describes a more extensive form of this condition in which one or more of the lumbar vertebrae may also be missing. Caudal regression syndrome refers to the same condition — the missing portions of the spine (the caudal regression) — and the syndrome of conditions that often accompany it.
Conquering fear
Namine showed me that she won’t let fear rule her.
Easter egg hunting
We spent Easter at Jessica’s sister’s house so our girls could go egg hunting.
Making therapy fun
Physical therapy is not fun. It’s hard work — tearful, painful work. Namine is a hard worker, but even she has her limits, so Jessica and I do what we can to make it enjoyable.
The good and bad of labels
The dark underbelly of the special needs community is the dislike of the label of “special needs” itself. That, combined with the fact that many able-bodied people are writing and speaking for disabled people (both by professionals and caregivers), can be a recipe for disaster.
Obamacare saved my daughterFeatured on The Mighty
Losing the Affordable Care Act would be devastating. Without it, my daughter would most likely be dead.
Microphone stand
For Christmas, Namine received a little microphone and stand. The stand was perfect for us to use in a little homemade physical therapy.