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
Friday is this little beauty's birthday. There is so much to celebrate, so many little and so many major things. It's been quite a year. Through it all, and from the beginning, she has been a fighter and she has been a source of so much joy. To the subject of the post, though, what's…
Today's first second opinion visit took us to Doernbecher Children's Hospital in Portland, where we met with PT, neurosurgery, and the head of the spina bifida clinic. (The second second opinion visit (with pulmonology) couldn't be scheduled the same day.) We came away with a lot of really good information and feedback, and more understanding…
Saw this graphic today on Facebook and snagged it, because it so completely summarizes parenting of a special needs child. It's no easy thing, but then again parenting in general isn't a simple thing to begin with. But it is incredibly rewarding, and so very beautiful. And I can't help but think in some way,…