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Exercise Evanna's Way
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. ... -
Weaning from the G-tube
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) ... -
Inclusion and Independence
"It's so great that you let her be independent." "You do so many cool things." "It's so awesome you guys let her do almost everything." "You are crazy to be ... -
Trialing a Walker at PT
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 ... -
Really Good Day
Last night was Evanna's first night on the new bipap settings. They lowered the exhale pressure a tiny bit but drastically reduced the back up rate (breaths per minute). I ... -
A Little Trip in to the Woods
This may be one of those "don't try this at home" things. Mika and I took Evanna for a walk close to home, taking a side trip into a little ... -
Sleep study 2019
Last week we got a call from Seattle Children's Sleep Center with a cancellation spot for an overnight sleep study. We took it. While Evanna's anxiety did kick in as ... -
She PASSED!!!
That ice cream...that's doctor approved! Evanna passed her swallow study and is now allowed to eat and drink whatever she wants...small quantities of thin liquids and whatever else. Now we ... -
An Order of Anxiety, Please
It's been 22 months since that horrible shunt revision turned fifteen days hospital stay. Since then, we've have numerous pleasant outpatient appointments and a successful-all-went-better-than-expected surgery. Yet, we are still ... -
G-tube-Free Appears on the Distant Horizon
We've shared before... Ever since her detethering surgery, Evanna's interest in and ability to eat orally has changed dramatically. That hasn't changed. On the way home from a day of ...
