It's been quite a while so I decide I should say something.
We have reached the two month post-op point and I don't quite know what to think. Things are going okay, but not great. We were forewarned that recovery was likely to take a year. I think we are really just expecting too much too soon. We saw such major improvements right away, but since then there have been no significant changes.
Alex seems to have enough energy (spoons for those who know what I'm talking about) to make it through about 2 hours of activity daily. That means she can work for 2 hours, or do school work for 2 hours, or shop for 2 hours. That's really a huge improvement from how she was prior to surgery, but darn it we want more! It seems like there is always a problem that calls for more hydro: the flu shot, her menstrual cycle, catching a cold. Each thing seems to take over her body for a week and put recovery at a standstill. It's very frustrating.
We are still fighting the fatigue, headaches, and anxiety, and have seen only a few pounds of weight loss. Oh, and a new thing...both knees are twitching constantly to the point it has made her legs ache and have a bit of visible bruising. Weird. I'm thinking maybe her potassium is low or we need to reduce her Florinef.
My Cushie friend Robin sent me some articles on BLA recovery and quality of life. I need to let them sink in and realize this is gonna take some time.