Our Life is…

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



Adventure Driving with K

This weekend K and I went to the Health Museum with her "husband" and his family. We all had a great time, but as we were enjoying our afternoon, heavy rain had been falling outside. When we left, I thought... Continue Reading →

Genetics with K

A couple of weeks ago, K had her genetics follow-up appointment to review the results of her Nuclear Mitome testing. This is a genetic test that looks for mutations in 448 nuclear genes that are involved in mitochondrial function. The... Continue Reading →

All By Herself!

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 →

Pulmonology Appointment

K had a pulmonology appointment recently and everything went very well! It was our first appointment since starting K on overnight oxygen for her central apnea AND since discovering that she needs daytime oxygen most of the time when the... 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 →

ER Visit

It has been a rough few days! We are currently fighting against a return trip (we were already in the ER on Saturday) to the hospital because K still isn't doing well. It all started Thursday afternoon when K made... Continue Reading →

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