We saw a new genetics Dr today and we weren’t a fan. I get what she was trying to say but I feel like she said it all wrong. She told us addyson has severe autonomic dysfunction and we need to accept that and move on w living life. I feel like we have doneContinue reading “Rough day w a new Dr”
Author Archives: mdaugherty1222
Rough week
It’s so hard. You look at pictures and it looks like she’s had a great week. However it’s been a week of struggle. Her gi system is not working with us at all this week. Every day has been a struggle of what to feed her, when to feed her, when to pump, when toContinue reading “Rough week”
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”
Past week.. Busy but good
The past week has been busy. Addyson had two Drs appointments which then led into needing multiple xrays and needing to add in another specialist, so now we have an orthopedic for bone length discrepancy. We did find out that her hips are not in alignment and her tibia is actually a different length inContinue reading “Past week.. Busy but good”
Kki-leg discrepancy
At kki today with miss addyson. Here to see her pain management team. Update: here’s the scoop from today’s appointment. We need to see another provider maybe two. Pt and possibly a limb difference Dr or a orthopedic surgeon.Today they identified that addyson has a limb length difference between her right and left leg. WeContinue reading “Kki-leg discrepancy”
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.
Beaming with hope 