Two done

Eila, Joel, and I came home on Tuesday and have been trying to get back into our routines.  Eila's urology procedure went so well on Monday evening, that all of her output for the last 2 days has been into her catheter bag and her ostomy bag has been dry.  Overall this is what we want, but it's always a little hard to know if we should feel happy about changes right away.  She will go up next week for a follow-up appointment with them, so hopefully we'll know if they also feel like the changes were successful.

From Sept/Oct2015

Eila went to school yesterday and today, and things seem to be going okay.  I think she's still adjusting to kindergarten (especially the chaos of lunch time).  But she's happy to be home with Sloan again, and is still absolutely delighted with her new ipad.

Today she had her blood checked and the nurse called with her numbers.  Her white cells, platelets, and neutrophils are all down - the nurse asked if she was more tired.  She is clearly tired, but hanging in there.  Unfortunately her hemoglobin has also dropped to 7.9, so she's getting closer to needing a transfusion.  It's hard and frustrating to think about this - the experts say that after 5 transfusions, a body doesn't "accept" foreign things as well.  We know we need to focus on today and getting Eila healthy, but it's so very hard to try to ignore the tomorrows knowing that she'll eventually need a new kidney.  We'll keep trying to take one day at a time, but I hope there's lots of research dollars going into transplants so that there's some hope that these guidelines will be adjusted before she reaches that point.