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)”

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”

Tree drive drop off and Drs appointments

Another busy day. Addy had two Drs appointments today and home hospital teaching. We also decided that today would be the tree drive drop off date and lunch with a friend! First appointment was with one of addysons autonomic dysfunction Drs. She agreed we are on the right path and have already tried all theContinue reading “Tree drive drop off and Drs appointments”

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”

Surgical follow up

Today we had addysons follow up with her surgeon. I know it’s odd to still have a surgeon one year post her most recent surgery, however he will follow her for years because he’s also the one who will do her next surgery, which will most likely be her pectus excavatum repair. Today we discussedContinue reading “Surgical follow up”

Another day at chop

Today we saw opthamology, nutrition and gi. Opthamology said her eye sight is good… As far as the tracking issue since her scooter incident, we should see the eye tracking Dr so that’s another appointment. Nutritionist is pleased with what we’re doing and wants her to stay on her feeds, no talk of decreasing anytimeContinue reading “Another day at chop”

Last day of wish trip

Today is our last day of addysons wish trip, we head home tomorrow. It has been an amazing trip with lots of memories.. Below are a few highlights. Addyson goes through so much medically so to have a week to make these memories and focus on all the fun things has been amazing.