I haven't seen much change since my last post. Overall Alex is still better than she was prior to the BLA. She is now on what may be a maintenance dose, but I doubt it. She is on 2 Florinef pills, split into 4 doses, and takes hydro 3 times daily, split 17.5-5-2.5. She has had a headache almost continuously for the past 2 weeks. It is really frustrating. It worries her that it's the pituitary tumor in their acting up again, but I really think it's about getting the medication dosages correct. We have a phone appointment with Dr. Friedman on Sunday; I hope he will shed some light in the problem.
Once she got to the lower morning dose of hydro she quit getting out of bed early, but she does manage to get up by 9:00 or so. She showers and gets dressed every day and has been chauffeuring me around on errands trying to get in her 50 hours of driving with a permit, before she can try for a license. Most of the changes we saw immediately post op came to a stand still, but we are hoping to see more improvement with lower medication dosages. For now, at least, she is sleeping at night and the GI stuff is gone.