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Evanna's Joy

  • Home
  • About
  • Silverwood
  • Contact
  • What is...?
    • What is Spina Bifida?
    • What is Hydrocephalus?
    • What is Chiari II Malformation?
    • What is Clubfoot?
    • What is a G-Tube?
Home›Category: "Spina Bifida"

Spina Bifida

  • Silverwood Opening Day 2025: The Good, The Bad, and the Ugly...

    Silverwood, Silverwood Review, Spina Bifida
    May 5, 2025
    by Scott
    Opening Day 2025 is now behind us, so it's time to take a look at our experience. First, the good: the weather held out. it wasn't too crowded. the new ...
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  • Quality of Life

    Spina Bifida
    January 1, 2019
    by Scott
    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. ...
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  • Beyond the ADA

    ADA, Spina Bifida
    November 20, 2018
    by Scott
    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 ...
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  • Be Joyful!

    Spina Bifida
    January 4, 2018
    by Scott
    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 ...
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  • She's a Fighter...

    Hospital, Spina Bifida
    November 21, 2017
    by Scott
    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, ...
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  • Spina Bifida Awareness Month!

    Spina Bifida
    October 2, 2017
    by Scott
    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 ...
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  • Second Opinions

    Spina Bifida
    August 22, 2017
    by Scott
    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 ...
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  • Evanna's Love What Matters Video

    Spina Bifida
    August 13, 2017
    by Scott
    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 ...
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