Back in January... K decided that her Valentine should be her friend N, because he knows about Harry Potter (he went on a Make-A-Wish trip this year to Harry Potter World!) and he would "understand her". I told N's mom... Continue Reading →
Today was Global Rare Disease Day and the teachers and Staff at K's school participated in Global Genes Project's Wear that you Care Day Fundraiser. They donated a total of $210 to MitoAction in honor of our sweet girl (and... Continue Reading →
Last night, K and I spent the night in a nursing home. Weird, right? Many people have asked me about why we had to do this and although my understanding of that specific requirement is limited, I'm going to do... Continue Reading →
Today I had lunch with K at school and finally got to witness her awesome, (mostly) self-sufficient, midday medical skills in action! She did all of the following things for herself (her wonderful nurse sets it all out for her):... Continue Reading →
K had a pulmonology appointment recently and everything went very well! It was our first appointment since starting K on overnight oxygen for her central apnea AND since discovering that she needs daytime oxygen most of the time when the... Continue Reading →
On the way to school on Tuesday, my son said, "Hey Mom? What if K was normal?" I said, "Normal? What do you mean?" and he said, "You know--NORMAL--like she didn't require so much technology hooked to her..." My immediate... Continue Reading →
(this is how a typical HEALTHY school day runs for our girl) 4:30am Her overnight fluids end. Time for Nexium (for reflux) and CoQ10 (for mito). 6:15am She gets Augmentin (for gastric motility) and 8 ounces of Elecare Jr with... Continue Reading →
It has been a rough few days! We are currently fighting against a return trip (we were already in the ER on Saturday) to the hospital because K still isn't doing well. It all started Thursday afternoon when K made... Continue Reading →
Our Life is... 