E went yesterday to get his Mara appliance put in. He got it installed, but then it came undone on day 1. Today, my dad took him back to the orthodontist so it could fixed, if you recall A had a similar situation with her braces and she recently also had her MARA appliance break.Continue reading “Always Confusing….”
Tag Archives: dysautonomia
Aadp and echo/ekg
Let me just start with what a long day… And thank goodness for our friend sandra who went with me and helped with the craziness of the day. Yesterday was ridiculous and I didn’t know if I should laugh or cry…. But if yesterday wasn’t friendship, I don’t know what was. EKG looked good. EchoContinue reading “Aadp and echo/ekg”
Our new motility gi & surgical update
Our motility gi Dr who we have had for years retired in December, so today we met our new one. I liked her… She listened to our questions and answered in normal everyday language. She also agreed that if meds / protocols aren’t working, then let’s stop them, so today we removed two meds fromContinue reading “Our new motility gi & surgical update”
Tough day
Today wasn’t the worst day we have had physically with addy, however I think it was a reminder, a slap in the face that here we are almost 12 yrs later and with a team that has known her for years and we still get deer in the headlight looks or shrugs of I don’tContinue reading “Tough day”
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”
Beaming with hope 