We've been home since Monday afternoon which has been FABULOUS. As nice as the staff at Vandy Children's is, it is AWESOME not to have people coming in every few hours to mess with Aida or ask questions or whatever. We went back to the clinic to see the hematologist and get labwork on Tuesday which will be the routine for a little while, we think. It will probably be twice a week for now to keep an eye on the platelet and fibrinogen levels. So far, so good. The last transfusion (for fibrinogen) was last Wednesday which is WONDERFUL. She had been getting them every 2-3 days, so going for more than a week is encouraging! We went in today for labwork today and an MRI and are scheduled again on Tuesday for labs and MRI results. Praying the new medicine is already having an effect in shrinking the hemangiomas.
Meanwhile, we went to the pediatrician for all the normal stuff (oh, yeah! forgot about that!) on Wednesday and will revisit again next week. The office is part of Vanderbilt Health, so our hematologist was able to recommend someone she actually knows and has worked with before. They all have access to the same info at their fingertips as well which is really fantastic. We're not exactly on a schedule yet, so I'm generally exhausted. :) Aida still occasionally acts like a preemie/newborn then remembers how to be a big girl like it's no big deal. :) Speaking of...it's time for her to eat, so I'd better go! Love to all!
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