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 to be adding more to her overnight feed.
Upcoming specialist appointment: we have a big appointment coming up this week with a dysautonomia specialist. We are holding onto hope that he will be the dr we need. That he will be able to not only stabilize her but maybe just maybe help her to improve!!!!
Tomorrow we all have eye appointments. Hoping the kids eyes have not gotten any worse. Ethens eye issue is not reversible so a decline would not be good. Addyson tends to have high eye pressure so fingers crossed that is stable.
School: We had Addysons school meeting the other day. It was tough. It’s always hard to hear where the struggle is but it gives us some good information. Now we know where to concentrate.
This month on feb 28th it’s rare disease day. Above are some facts about rare disease.
Link to Addysons ostomy wishlist to help keep up with her day to day care: https://www.amazon.com/hz/wishlist/ls/18SIH8YM5AEL2?ref_=wl_share