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 →
I write one of these letters for K's new teacher every year so they know what they are getting into and then I pray they don't run for the hills! 😉 I try to be as open and honest as... Continue Reading →
Today I had lunch with K at school and finally got to witness her awesome, (mostly) self-sufficient, midday medical skills in action! She did all of the following things for herself (her wonderful nurse sets it all out for her):... Continue Reading →
On the way to school on Tuesday, my son said, "Hey Mom? What if K was normal?" I said, "Normal? What do you mean?" and he said, "You know--NORMAL--like she didn't require so much technology hooked to her..." My immediate... Continue Reading →
(this is how a typical HEALTHY school day runs for our girl) 4:30am Her overnight fluids end. Time for Nexium (for reflux) and CoQ10 (for mito). 6:15am She gets Augmentin (for gastric motility) and 8 ounces of Elecare Jr with... Continue Reading →
Our Life is... 