Long day – multiple appointments at chop

Today we had a bunch of appointments at chop. (Surgical follow up, eye appointment and repeat ekg). We also delivered masks from a friend to the hospital

The appointments today went as expected. No major updates.

They gave us some cream for her tube. We adjusted the tube balloon so hopefully that helps.

Eye appointment went good. They said her Alacrima is pretty uncommon. We could possibly fix it but the only benefit would be not needing eye drops anymore.

She also had a repeat ekg. Awaiting results on that.

All of our nurses today were AMAZING. So patient and kind. The eye dr today was my favorite. Very kind and knowledgeable.

We also saw these crazy bugs flying around philly today. Addyson did not like them.


We are also in talks with her team on a few tests to rule out another diagnosis.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: