2020, 2021. . . what year is it again?
Christmas 2020 So, it's October. 2021. The last few years have been a bit of a drought for my blog, I have a plethora of blog post drafts in my head, my phone's notes app, and my journal, I've just never sat down and sifted through the difficult thoughts to actually...
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...
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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 severe gag...
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 hospital...
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 tidbit he...
Allowing for Help
I just got off the phone with a nation-wide home nursing company. While answering the questions the recruiter had for me, about Littlest's health, our family's needs, days we need covered (and nights!), and all of that, the recruiter mentioned in passing that doing it...
Year of Adventure Gallery: January and February
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Remembering Memories
Have you ever had something happen, and in the moment you didn't realize exactly how big the thing was? That was me five years ago today. Littlest was struggling with Failure to Thrive (ftt) post-decompression surgery. He had a regular weight check at his...
Rainy day thoughts.
#Littlest had one of his annual radiology exams today. Good news, for the most part, but the radiologist did recommend we talk to orthopedics about his spine and hips–which we were planning on per neurosurgery from the hospital stay in Dec., we see neuro next week and...
Hope Inextinguishable
Six years ago on Dec. 22, 2010 we got the news that Littlest had a spinal defect known as Spina Bifida (I was 18 weeks along in his pregnancy). We were given SO MUCH HOPE at our perinatologist's office: that he would walk, that...
2016 ends, and a New Year begins. . .
We used to write annual Christmas letters, with cards that featured a posed family photo set in a custom-designed-by-me setting. Then about six years ago, we started slipping, and started to write New Year's letters... then we continued to slip further and skip...
But First, some Backstory.
My life was the Classic Story for so long. Before it became a Story of Living. Girl grows up in a happy home, shades of Little House in the Big Woods and Little Women abound, from cutting and stacking firewood to raising livestock, to having four sisters who put...
Welcome to My New Home on the Internet
I have been debating for a while about changing my domain name; I know I need the outlet that writing provides, but I was too overwhelmed with the multiple avenues I had. So I am simplifying. Littlest's story will be interwoven here. My goal is to protect his privacy....
Measles… What can I do about it?
This is a post I wrote for a mom's group I'm part of, because a lot of moms were asking for clarification of CDC guidelines or an easy to understand explanation. Disclaimer: This is not medical advice. I am not a medical professional. I’m a concerned mom who has a...