Addyson will have a day of testing coming up: 19 April @CHOP with her gi team. The two test she has to go through that day will be rough but she has done both before and knows that at the end of the day they will be over. Surgery is scheduled!!! We have had aContinue reading “Surgical update”
Category Archives: Uncategorized
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
It’s been a while since I updated. Nothing major to report. Addysons been doing good on her new med from her new dr that focuses on pots and autonomic dysfunction. He’s been great. He checks in often and is just so kind and supportive. She’s started softball and so far is doing well. We areContinue reading “Update”
Reflecting
Two years ago we wheeled Addysons back to the operating room for her ileostomy surgery. This was a huge decision and definitely the hardest one we have ever had to make. She didn’t get a lot of time to process the decision but her entire team felt it was for the best and it was.Continue reading “Reflecting”
Rare disease day
February 28th is Rare disease day. Today we spread awareness on rare diseases. We spread awareness so that others can get a glimpse into our journey. So they can see more than just the fight. More than the driving back and forth to appointments. More than all the hospital stays, lab procedures, clinic visits andContinue reading “Rare disease day”
Loving the new dr on our team
I cannot express how grateful we are for the new dr on Addysons team. He is amazing. He checks in on her all the time. He shuts down his clinic so he has time to see her without being rushed. He has the best bedside manner and truly cares about his patients and their families.Continue reading “Loving the new dr on our team”
Improvement
The dr was happy to see some improvement in Addysons bp this morning however he wants it to be better. He gave us his personal cell number and said to keep in touch with her bps and hr info. He expects to continue to see improvement over the next few weeks.
Hope
Addyson has a new doctor on her team. She saw him today and will see him again tomorrow. So far it’s been a positive appointment so we are hoping we will continue to see improvement. While it’s another med it has already shown some positive results so fingers crossed that we continue to see improvementContinue reading “Hope”
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”
