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”

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”

Busy days

Today was another busy day. I had a drs appointment, then had to go get new glasses, sorted tree drive items, followed by Addysons dr appointment then her tumbling which was followed by her home hospital tutoring. No down time here! Today we spoke to a surgeon we trust about mals and what would beContinue reading “Busy days”

…and softball is over

And just like that softball is over. So grateful she got to play this season. She had a blast and made friends. She even pitched in the last two games. Her pitching today improved from last week! We are grateful that she has a team at CHOP that have been focusing on her want toContinue reading “…and softball is over”