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”

Plan forward

We spoke to addysons motility gi Dr tonight. We have a plan going forward for testing next month when she flares. He also said every xray during a flare has shown a functional ileus. He wants to help us get better control on those. We don’t want to be an ileus mode every month. SoContinue reading “Plan forward”

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”

The journey… The trauma

As parents we have seen some horrifying things. Some truly truly heartbreaking experiences. We have had the joy of mother/father-hood aggressively stripped away from us. We have held our daughter down for things more painful and traumatizing than you can imagine. We have held her screaming for hours or even full days. We have seenContinue reading “The journey… The trauma”

Drs appointment and friend time

Today addyson had a Drs appointment and then we got to hang out with good friends. Although Amy and I forgot to take a picture. The Drs appointment went well… We are keeping everything the same. The Dr explained that addysons body is functioning backwards and outta sync but still performing the function just notContinue reading “Drs appointment and friend time”

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.