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Quality of Life
One of the main sources of fear and concern at the time of a spina bifida diagnosis, brought to us by doctors and nurses, is that of quality of life. ... -
Beyond the ADA
In preparing my thoughts for my meeting with the local Parks & Rec director (not quite at the planning stage, but formulating ideas), I came across this article that includes ... -
Be Joyful!
We've been pretty open about the difficulties of the past 15 months...but I see these pictures and could not imagine life without her. She is joy personified, and a constant ... -
She's a Fighter...
This picture was a later in the day of Evanna's birth, just back from surgery to close her back and place her shunt. JoAnn was still in two floors away, ... -
Spina Bifida Awareness Month!
October is Spina Bifida Awareness Month. You can read more about what spina bifida is by going to What is...? on the navigation menu, then selecting Spina Bifida from the ... -
Second Opinions
One of the lessons we try to convey to other parents is the need for them to become their child's biggest advocate for care. While there have been huge advances ... -
Evanna's Love What Matters Video
Evanna's Joyful Laugh "This is my 10-month old, Evanna. She has spina bifida, hydrocephalus, chiari malformation, clubfoot, and since May, severe obstructive and central sleep apnea...all of which may lead ...
