We are in the process of getting a handicap placard for K. It is supposed to be a pretty simple thing to cross of the To Do list. The process should run like this: - Have pediatrician fill out the... Continue Reading →
From signing to scripting to reading poetry, one of my favorite parts of Mother's Day is rewatching this little record of how far K has come over the years (which definitely have "flown wite by"!)
This weekend K and I went to the Health Museum with her "husband" and his family. We all had a great time, but as we were enjoying our afternoon, heavy rain had been falling outside. When we left, I thought... Continue Reading →
A couple of weeks ago, K had her genetics follow-up appointment to review the results of her Nuclear Mitome testing. This is a genetic test that looks for mutations in 448 nuclear genes that are involved in mitochondrial function. The... Continue Reading →
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 →
Our Life is... 