Our Life is…

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



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 →

Motility Follow-Up

I'm a little behind here! Waaay back in June, before the perfect storm and all that came with it, K saw her motility specialist for the first time. Her ordered a sitz marker study, which we put off until the... Continue Reading →


Back in June, K's motility specialist wrote a prescription for a medication called Periactin. It is a first generation antihistamine (like Benadryl), but it is pretty much worthless in that capacity. Instead it functions really well in a few different... Continue Reading →

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 →

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 →

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 →

Motility Appointment

May was full of medical appointments for our girl that I haven’t had time to write about AND she had an extra big appointment this morning, so I’m going to start there today and then work backwards... Today was K’s... Continue Reading →

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