After Friday winning against me (see Fridays post). We rebounded and had a great weekend. Saturday was super busy. We were all in different directions. We had softball practice, then ethen had a hockey game and I had a friends baby shower to go to and addyson had a friends birthday party. Thanks Jenna andContinue reading “Good weekend”
Tag Archives: Mitochondrial disease
Addyson chronicles (March 10th)
Welcome to our craziness. Let’s just start by saying that. I feel like we live in a state of craziness lately. So back in OCTOBER I booked today’s follow up with addysons sleep neurologist. There was nothing on the calendar year, so today looked like the perfect day. Plus it was a 930am appt… GoodContinue reading “Addyson chronicles (March 10th)”
Cardiology follow up and qsart testing
Long day. Let me start by saying we didn’t get the news we had hoped for, however we still are hopeful that we can stop this aortic root dialation. Her echo showed. 3 growth in her aortic root dialation which is not what we wanted. We wanted it to stay steady (with no growth) CardiologyContinue reading “Cardiology follow up and qsart testing”
Infusion # who knows 😂
Yesterday ethen had his eye appointment. His script has changed (gotten worse) but with new glasses they got him to 20/20. However we are screwed if his glasses ever break because he’s way past the eye sight for driving (when it’s time). We will always make sure he has a spare pair w him. HeContinue reading “Infusion # who knows 😂”
Gi update
So we have had a few people ask for updates from yesterday. It’s tough. It’s emotionally draining. I needed a day to think through it all, discuss it and then find a way to explain it. We left with another new diagnosis and no new treatment options. For the second time in 8 weeks weContinue reading “Gi update”
Beaming with hope 