Our Life is…

Hilarious, Joyful, Medically Complex. Food Allergies, Mito, CHD. Toddler, Tween, Teen. A new adventure every day.



Medical May

As I mentioned in a previous post, May was full of medical appointments for K. In reverse order she was seen by GI, pulmonology, the dentist, her mito specialist, and her won't make for a super interesting post, but... Continue Reading →

Mitochondrial Disease Awareness A friend's daughter made this great video about her little brother who has mito. It does a great job explaining what mito is and how it affects these kids and their families. K has experienced many of the same... Continue Reading →

Slowly, but surely!

I think I can finally say that we are seeing some steady improvement in our girl! Yesterday was the first full day with NO backtracking, just beautiful forward progress! Hooray! No vomiting, no pain, plenty of urine, trialed some ice... Continue Reading →

Rare Disease Day!

Today was Global Rare Disease Day and the teachers and Staff at K's school participated in Global Genes Project's Wear that you Care Day Fundraiser. They donated a total of $210 to MitoAction in honor of our sweet girl (and... Continue Reading →

“What if K was normal?” he asked…

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 →

A Day in the Life of K

(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 →

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