Okay!! I will give a blow-by-blow of our trip to Chicago, (including butterfly garden pictures!) but right now I want to post another update on the medical side of things. We had our follow-up phone call with Dr. Pachman and got the full results of all the bloodwork and other tests, and (joy of joys) much of the news was actually good!
Tests for lupus overlap and celiac disease were negative, and most of her bloodwork looked really good. I mentioned the nailfold capillaries test earlier, and they were deemed "quite mild" (!!!!!) The bone density scan showed some thinning due to the inflammation caused by disease activity, but not enough to warrant treatment with additional meds. There were other things mentioned that I can't quite remember now (we'll get a copy of the report, though) but anyway, it was mostly all encouraging. Dr. Pachman went so far as to give us cause to hope for remission, without any permanent damage (muscle or otherwise). I almost want to cry as I write this.
Overall, much better news than we had dared to hope for. We discussed possibilities for the next steps in Mielle's treatment, and are making some more minor changes to the drug regime. We are once again beginning to lower the oral prednisone, but very slowly and cautiously. You may recall that lowering this med is what caused her relapse in the spring, but her other meds are at much higher dosages than than before so we're hopeful that we can successfully taper the prednisone this time.
Initially, we were told to come back in two months, but it's been revised to four. Yay! I believe the two offices (Chicago and Stanford) will be able to work together on an ongoing basis, but there are some tests that can only be done in Chicago, and we will go when necessary.
We are not out of the woods yet, and we will be dealing with this on a pretty intense level for some time to come. But I finally feel that I have real, tangible evidence of what is actually happening with the disease activity, and with the treatment. I wouldn't say that I have complete peace of mind - I doubt I ever will - but this is the closest I've come to it since Mielle was diagnosed. And that was definitely worth the trip!