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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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lifewithk

It Devours! Book Signing with K

Tonight, I took K to see Jeffrey Cranor and Joseph Fink at a book signing of It Devours! at Murder By The Book in Houston. She looooooves Welcome to Nightvale, so it was a very big deal that she was... Continue Reading →

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.

An (updated) Visual Guide to K: What Does It All Mean?

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 →

Help!

K has been struggling quite a bit lately and we are feeling a bit helpless. She reports symptoms to me so often and all I can really say is, "Okay, I'll make a note of it." and send her to... Continue Reading →

Dear Senators,

I am writing to you as a mother who fears for her child's life at this moment in time, because you have the power to help preserve that life. My child is on a Home and Community Based Services (HCBS)... Continue Reading →

The Monster Returns…

I need to write an update about K, but I keep starting and deleting it. Things are kind of exhausting right now and detailing it feels exhausting, too. If you haven't known us a long time, you probably don't know... Continue Reading →

Viruses, ketones, and K. Oh my!

Many new people have entered our lives during the medically-stable period in K's life. I know that a lot of the things I say or things that happen can be confusing for people who don't have a frame of reference... Continue Reading →

Back in the Ocean

Humans are capable of amazing things. One of those amazing things is the ability to adjust to just about any set of circumstances in┬átime, and because of┬áthis I've found that eventually most things become normal for us no matter how... Continue Reading →

Testify

Yesterday I went to the Capitol in Austin to testify in front of the Senate Finance Committee about proposed cuts to CHIP and Medicaid. I left home about 8am and got home at 10:30pm, and much of the time in... Continue Reading →

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