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”

Weekend catch up

This weekend Ethen played and played with a friend. They played virtually but they interacted the whole weekend through the phone while playing the game. They took turns talking, they communicated throughout the game to work together and trade items and help find other items. They really had fun. It was so great to hearContinue reading “Weekend catch up”