We spent the last few weeks trying out our new hopkins/Boston protocol. We added in the periactin we do Boston protocol every other day with Hopkins on the other days. Both hospitals are aware we are doing this. They have said whatever you can get to work. Well I’m not sure it’s working. Addyson spent two nights in a row laying down due to pain and now her stomach is distended 🙁 we are continuing to work with her teams to try and find a protocol that is more effective. We leave for Minnesota Saturday. This is our first time traveling so far away from home with her new protocol. Let’s hope we can have a good Trip with no er visits
Beaming with hope 