Friday, November 04, 2011

Last half dose of Soliris

Aimée is doing amazingly well folks and that is the theme of today's update.

This week she saw her Liver Doctor who was almost emotional about how well she was doing.  It was a great appointment for Aimée because she is taking primary on answering all of her issues as she is clear headed and off the strongest of the pain meds.  She won't see him again until February and the Kidney Doctor until December.  She is about 95% mentally back and that is huge. She is running the kids homework and events again and is able to answer most of the medical questions for the doctors and therapists (Physical/Occupational).  She still has some patches of rough memory but she is at least able to repeat the answers I'm giving if she doesn't remember for herself.  This is all part of getting me out of her hair and back to work since she can take care of herself.

This week she is climbing the stairs and taking care of all of her daily tasks with very little (to no) assistance from me.  The Physical/Occupational Therapists are telling me to back off more and more and let her do her thing to help her recovery.  She might be released from home Occupational Therapy to outpatient soon (she still needs PT at home for a while).  She has cooked 3 meals this week for the family and that is a huge marker for the OT.

Today's Soliris treatment was the last at the half dosing (here's her picture while we wait for the treatment to start).  Next Friday's will be the first at full dose and then she is every 14 days (plus or minus 2 days) forever.  She also only sees her Hematology Doctor every other week so after next week she will have her first week of no UNMC visits (KNOCK ON WOOD) since this crap started.  Once we get to a maintenance level things should continue to improve.  Today's hemoglobin was at 9.9 BEFORE the Soliris and that is the highest she has had pre-Soliris yet.  Things seem to be getting slowly better.

As always, thanks for the thoughts and well wishes.  We are very grateful and it is so AMAZING to see Aimée up and about kicking butt and returning to her old self everyday! 

No comments:

Post a Comment