Good weekend

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”

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)”

Sleep deprived EEG

We did it…. We made the sleep deprived EEG work. Thanks to our family and friends. Sleep deprived EEGs are tough because she has to stay up all night and then stay awake till she gets all connected. With everyone’s help we did it! She was soo tired. Sandra who came over in the middleContinue reading “Sleep deprived EEG”

Genetics: Dr. Chapman @ Children’s National

Today we saw Dr. Chapman. I really liked her. She took time to answer all of my questions and just discuss Addyson’s Case. She said that we have truly had the best of the best genetic testing done. She only thought of two extra tests we could consider, one of which we went ahead withContinue reading “Genetics: Dr. Chapman @ Children’s National”

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 😂”