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Our Life is…

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

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congenital heart defect

Some days surprise you…

This morning sucked. We had Josie's cardiology appointment which always causes some  stress even though I know she *should* continue to be fine. On top of that, my map app miscalculated our leave time when I checked it last night... Continue Reading →

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A Tale of Two Diseases.

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.

Heartiversary

One year ago today, we said goodbye to our sweet girl and sent her to the OR with strangers who would open her chest and heart, and repair a very problematic hole between her ventricles. One year ago today, we spent... Continue Reading →

Josephine Update!

Oh, our Josie girl! Such a complicated bundle of joy. She's doing really well right now. She's walking well and starting to talk (she says: bye, hi, cat, up, and heeeeey- like Fonzi), and she signs like crazy! I can't... Continue Reading →

Big Days

Some days you wake up and everything is the same and by the time you go to sleep nothing is the same. Those are the Big Days. A year ago today was one of those Big Days for us, the biggest... Continue Reading →

Josie’s big surgery!

The quick version is this, she went from this... to this... in 5 days! The long version is, of course, much longer. It was the hardest experience of our lives thus far and we really, really hope it remains the... Continue Reading →

Coming (Too) Soon: Open Heart Surgery

Josie is 6 months old and a total JOY! It has been a weird, wild, and exceedingly blessed six months with our sweet, tiny girl. Unfortunately, that means it is time for her big open heart surgery to repair her... Continue Reading →

New Normals

Life has changed so much since Josie's diagnoses (VSD, congestive heart failure, failure to thrive, and milk protein allergy...a diagnosis for every month of life so far)! It is definitely more complicated logistically (more on that later), but actually getting... Continue Reading →

Home!

We were released from the hospital on Friday and it is SO wonderful to be home. Josie is so different now, it is almost like one baby went into the hospital and another came out. Before she was hospitalized, she was... Continue Reading →

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