Evanna loves being outside. Parks, however, are rarely truly accessible and inclusive despite being labeled as such or meeting ADA guidelines. As we visit area parks, we plan to document how well we feel they meet our idea of accessible, inclusive, and fun from the viewpoint of a young child in a wheelchair. We are…
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…
"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 trying to take a wheelchair out in a foot of snow, on an inaccessible trail,..." Ok, I made the last one up because sometimes I…
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…
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 don't know if it was a fluke, but she slept so much better, woke up earlier, and was in a great mood all day. It…
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 clump of forest. It was challenging, and we didn't make it far, but we would have gotten nowhere without her freewheel Besides the very uneven…
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 soon as we parked and then again when we started placing the probes, she made it through the process and fell asleep 11 minutes after…
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 just need to work on increasing the amount she will eat orally.
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 dealing with the psychological consequences of that experience. Yesterday, Evanna had a urology follow up appointment. The doctor wanted to feel her tummy, which reminded…