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 →
http://youtu.be/tXJ4zK4sgT4 A friend's daughter made this great video about her little brother who has mito. It does a great job explaining what mito is and how it affects these kids and their families. K has experienced many of the same... 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 →
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 →
Our Life is... 