We bought Evanna this crazy, noisy rubber chicken. She came up with a way to squeeze it that works out her arms. We are still working on her form though. LOL Archive note: this video could not be recovered. We are also working on her abs with sit ups. I'm not helping her at all;…
Many things have occurred to get us to where we are now: 1) Evanna's spinal cord detethering surgery resulted in an increased ability in swallowing and interest in eating. 2) Evanna passed her most recent swallow study for all thicknesses. She's supposed to limit thin liquids to small amounts while she practices, so we finally…
With Evanna doing so much better with sitting on a bench and then pulling herself to a stand, high kneeling, and other physical tasks, I pushed to get her in a walker again. So we made plans to arrive at PT without her AFOs for kneeling (which is better without them) and then putting in…
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, recovering from the C-section, so it was just her and me for a long time. It was one of the most difficult times. She was…
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…
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…
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…