Oh, our Josie girl! Such a complicated bundle of joy. She's doing really well right now. She's walking well and starting to talk (she says: bye, hi, cat, up, and heeeeey- like Fonzi), and she signs like crazy! I can't... Continue Reading →
Some days you wake up and everything is the same and by the time you go to sleep nothing is the same. Those are the Big Days. A year ago today was one of those Big Days for us, the biggest... Continue Reading →
Long time, no write! The past year or so has been so incredibly full and I have so many things to say and process and yet, the time and energy to devote to such things has been impossibly hard to come... Continue Reading →
Mitochondrial Disease Awareness week is over, but at our house it is never really over and there are a few more things I wanted to share here that I posted about on Facebook last week. Mitochondrial Disease is an INVISIBLE... 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 →
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 →
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 →
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... 