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”

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”

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

Cardiology, infusion and swim meet

Another busy day. It started with addysons cardiology appointment. We found out her echo was abnormal as her aortic root is enlarged. It cannot shrink back however we need everyone to hope, pray, whatever it is that you believe in. We need addysons aortic root enlightenment to stay under 3.0. Hers is close to theContinue reading “Cardiology, infusion and swim meet”