Why We Share…
This is a post my wife wrote on Evanna's FB page. According to many obstetricians, maternal fetal specialists, and neonatologists, this is a picture of someone who...-... Posted by Evanna's Joy on Wednesday, October 4, 2017
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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 submenu...or by clicking here. One of the reasons for Evanna's site and Facebook page is to bring awareness about spina bifida not just in the…
What’s in a Name?
Friday is this little beauty's birthday. There is so much to celebrate, so many little and so many major things. It's been quite a year. Through it all, and from the beginning, she has been a fighter and she has been a source of so much joy. To the subject of the post, though, what's…
The First of the Second Opinions…
Today's first second opinion visit took us to Doernbecher Children's Hospital in Portland, where we met with PT, neurosurgery, and the head of the spina bifida clinic. (The second second opinion visit (with pulmonology) couldn't be scheduled the same day.) We came away with a lot of really good information and feedback, and more understanding…
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 in the past 30 years in regard to spina bifida treatment, they will undoubtedly run into healthcare professionals that aren't in the specialty fields, and…
Special Needs Parenting
Saw this graphic today on Facebook and snagged it, because it so completely summarizes parenting of a special needs child. It's no easy thing, but then again parenting in general isn't a simple thing to begin with. But it is incredibly rewarding, and so very beautiful. And I can't help but think in some way,…
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 to a shortened life expectancy. Despite these things, and despite her surgeries and hospitalizations, she is joyful...a good reminder for all of us, regardless of…