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”
Tag Archives: feeding tube
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 😂”
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
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.
Pediatrician check up
Why does every one of addysons doctors say “she’s one that sticks with me and makes me think”? They all also say man, she’s still full of spunk even years later. Let her keep that sass it makes her the fighter that she is. Today we saw her pediatrican and we talked through everything. WeContinue reading “Pediatrician check up”
1st appt this set
First appointment of this set went as expected. Rheumatology changed dosage on addysons fever meds since in 6 months she’s had 6 fever episodes. He is hopeful this bump up will stop the flares. If it doesn’t work then we are to call and discuss another option. Tomorrow is the big day- aadp clinic. HoursContinue reading “1st appt this set”
Beaming with hope 