When K was born, she was seemingly healthy. With the exception of a couple of ER visits during her infancy, frequent illnesses, and slowness to reach milestones...we thought things were okay for most of her first year. By her first... Continue Reading →
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 →
I write one of these letters for K's new teacher every year so they know what they are getting into and then I pray they don't run for the hills! 😉 I try to be as open and honest as... 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 →
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 pediatrician...it won't make for a super interesting post, but... Continue Reading →
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 →
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 →
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 →
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 →
Our Life is... 