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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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gj-tube

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 →

The Story of K’s Tube

This week is Feeding Tube Awareness Week and the first suggested prompt was "Why does my child have a feeding tube?" and while I think everyone knows to some extent why K has a feeding tube at this point, it wasn't... Continue Reading →

Top 5!

In no particular order... 1. Last week, for the first time since starting occupational therapy at 17 months, K's OT mentioned her possibly graduating in the next few months. Whoa! Her sweet OT was a little teary-eyed at the prospect,... Continue Reading →

Meet K’s NEW Tube

K recently had her G-tube switched out for a GJ-tube. This was her old tube: It was a Bard G-button and it was very simple, just one little flap with one little port. It worked great for her for over... Continue Reading →

The Perfect Storm

I know many of you know that K was in the ER on Wednesday and again on Thursday and was then admitted, but many of you are probably wondering what actually happened and why she is still struggling. Hopefully, this... Continue Reading →

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