And the appointment went….

So today we waited and waited for Addysons gi to show up for our appointment. He’s great and really good but that often means we sit and wait hrs later than our appointment time for him to show up. But the good news is he never rushes us. He takes an hour or more withContinue reading “And the appointment went….”

Tomorrow’s appointment

Addyson has an appointment tomorrow that will hopefully go the way we want it to go. If so, it will be a pretty big surgery but hopefully get her on a better track. Things have been stable. Her ostomy is functioning. Gi wise she’s doing good. Seizures are controlled. Pots is stable (her new doctorContinue reading “Tomorrow’s appointment”

Update

AADP: overall was good. We have to redo her lab work next week because some of her lab levels were low so they want to recheck them. We still need her bp to come up so we are monitoring that closely. If her electrolytes don’t improve with the next blood drawl we will have toContinue reading “Update”

AADP clinic

AADP clinic went as expected this morning. We met with the team. All agreed she has stayed stable. Stable is a win compared to where we have been over the past few years. She had two blood levels (ferritin and potassium ) that were lower than they want so we are repeating blood work inContinue reading “AADP clinic”

Telemed appointment

So today we had a telemed appointment with Addysons gi motility dr. He had us concerned because he called two days ago and said we needed to meet to discuss her lab work. We had not yet see her lab results so we were unsure of what we needed to discuss. Anyway ….turns out he’sContinue reading “Telemed appointment”

And that’s a wrap

Good bye 2020…..hello 2021. 2020 sure has been crazy but even through all the craziness we had some good things happen!!! -we spent more time outside -we had drive by parades and participated in drive by parades (We were able to celebrate both kids safely while celebrating their special day). Thank you to each andContinue reading “And that’s a wrap”

Day 2 – sibo test and AADP clinic

Another very LONG day Today Addyson had her three hour sibo test. She has had this test multiple times. We were repeating to see if she needs a different med due to becoming antibiotic resistant. She was negative for bacterial overgrowth so that’s a plus We also met two amazing families today while doing theContinue reading “Day 2 – sibo test and AADP clinic”

Mito, cardiology, rheumatology

Today was a busy busy day. We started with Addysons covid test (for tomorrow’s procedure). She did really good with it this time. The lady even said she did really really good. Her results came back negative!!!!! We dropped off the tree items to chop. They were so excited and happy. Can’t wait to seeContinue reading “Mito, cardiology, rheumatology”

Busy week ahead

We have a busy week coming up. Both kids have their kki appointments Ethen has his behaviorist Addyson has her home hospital teaching Randy has a dentist appointment And we are heading back to chop for two full days of appointments. We have clinic appointments with the mito team and the AADP team. We areContinue reading “Busy week ahead”