It means that every morning and many afternoons, I mix a cocktail of water, formula powder, Gatorade, and Miralax for my 13 year old that will be pumped into her stomach (or intestines, if her stomach isn't working). It means... Continue Reading →
This is my daughter. She is a bright, hilarious kid who loves musical theatre, drawing, writing fan-fiction, online gaming, spending time with her friends, and texting/FaceTiming when she can't be with them. This is also my daughter. She needs a... Continue Reading →
I am a mito mom and a heart mom. In many ways, being a mito mom prepared me well for being a heart mom; I knew how to speak medicalese, interact with doctors, survive a hospital stay, navigate scheduling, track ins and outs, stay on top of a med schedule, how to live one day at a time so fear does not consume you...so many things! The thing that surprised me was how comparatively easy (which is still NOT easy) it was, not because I was so prepared, but because the world UNDERSTANDS heart defects and they DO NOT understand mitochondrial diseases.
I posted this yesterday and it struck me that "normal" people don't know what half of this stuff means! So I've provided some explanations below. I hope it helps you understand K a little bit better. Lesions: K had lesions... Continue Reading →
Step One: Have a baby. Step Two: Feed it. Ha! If only it were this easy. In case you didn't know, it is World Breastfeeding Week. I've been meaning to collect my thoughts on my most recent breastfeeding journey for some... Continue Reading →
This week is Feeding Tube Awareness Week and the first suggested prompt was "Why does my child have a feeding tube?" and while I think everyone knows to some extent why K has a feeding tube at this point, it wasn't... Continue Reading →
Carole Amber is the author of the beautiful book, The Gift of the Ladybug, which she wrote to share her son TJ's story and communicate the experience of discovering that you are parenting a different kind of child than you... Continue Reading →
Mitochondrial Disease Awareness week is over, but at our house it is never really over and there are a few more things I wanted to share here that I posted about on Facebook last week. Mitochondrial Disease is an INVISIBLE... Continue Reading →
When K was born, she was seemingly healthy. With the exception of a couple of ER visits during her infancy, frequent illnesses, and slowness to reach milestones...we thought things were okay for most of her first year. By her first... Continue Reading →
Our Life is... 