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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." ... -
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 ... -
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 ... -
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 ... -
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 ... -
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 ... -
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 ... -
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 ... -
Pacific Science Center & Seattle Center Playground
Driving all the way to Seattle for a single thirty minute appointment sucks. That's why we got a membership at the Pacific Science Center; if ... -
Our Library: A Great Storytime & Great Staff
We haven't been to story time at the library for quite a while. Evanna was totally into it today. The librarian read Tip Tip Dig ...