Our Life is…

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



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 →

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 →

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 →

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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