2019 in Review
2019 by the Numbers 7 hospital stays 8 brain surgeries 35 days inpatient 14 MRIs 8 Xrays 48 clinic visits at the hospital 14 visits to doctors outside the hospital 16 speech therapy visits 4 physical therapy visits 13 rounds of antibiotics 1 new hospital bed 2 new...Protected: The Ugly
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Diet and Growth
One of the biggest hurdles Littlest has faced in life has been eating. Anything mouth based, really, is a struggle. He didn’t start speaking until he was five years old, he hasn’t been able to swallow anything since he was breastfed, and he has a pretty...
Winter (Illness) is Coming
We have made it through I don’t know how many years without major illness. The last time we got influenza, Littlest had a two week PICU stay. The last time he caught a major cold, he had a weeklong sick-ward stay (there are specific respiratory wings in the...Hello, Crazy Life
So my last post was about waiting, and then I had a bunch of blog posts started but nothing written well enough to publish for over a year. Welcome to waiting, V style! We have had a full and BUSY Summer/Fall/Winter of 2017-Spring/Summer of 2018. Oldest and Quietest...Waiting
So much of life with a terminal diagnosis is waiting. Waiting for the next diagnostic procedure to help the doctors treat. Waiting for insurance to cover (or deny) whatever treatment or care plan the doctors agree upon. Waiting for the next step in the progression of...
On Mother’s Day
If you were asked to create an experience that would define your mom, what would you do? For me, I would pull out my favorite devotional readers, pack my chocolate and coffee (and maybe some oranges), and head out to the beach, just an hour or so before sunset. Set a...
It’s a Zoo . . .
In March we went to our local zoo, which is by far one of our favorite outings here in town. We struggle with weather and the wind, and heat, and pollen, but it doesn’t change how much we love seeing the animals, how much Oldest enjoys sharing some new...