"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…
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…
Our goal for Evanna has always been inclusion in every way possible... When we first found out she would be coming home from her shunt revisions with as bipap, we had already paid-for plans for camping. We could have cancelled. We could have split up, with one of us taking the other kids while the…
With today being Thanksgiving, I thought it fitting to write about thankfulness. Plus it's been on my mind for weeks. And last night as I drive the boys to Scouts, this song came on Spotify (oddly, in a Lauren Daigle channel I created that up to this point, almost never played anything else): That song…
The next big step for Evanna is the creation of a Special Needs Trust, which is a legal means that allows a disabled person to accrue funds for a variety of things (medical treatment, equipment, supplemental care, etc) without it counting as income, which could/would jeopardize her insurance coverage and SSI. Legally, it's a convoluted…
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