We are happy around our house this week. We finally have approval for Lily to see the child psychiatry expert at Stanford for a second opinon! It may not change a thing, but I want his feedback.
Lily is improving, with decreasing hallucinations and an increased ability to cope with frustrations. She may still fly off the handle, and sometimes she throws things, but she calms down more quickly. The drug cocktail she currently takes is helping, although we're still adjusting doses weekly.
Thanksgiving was a major victory! Lily truly hates the smell of turkey - she gets upset and her agitation escalates in relation to the duration and strength of the aroma. This year we ordered a precooked meal, and Lily didn't retreat to her room. She stayed in the living room and visited with family the whole afternoon. Lovely.
During the next few days, Lily needed some patience and downtime, but the progress was wonderful.
I am hopeful that we won't face any serious setbacks in the near future - but am beginning to feel like we'll be able to handle what comes. I have to confess that part of the equation is that I have recently begun taking an antidepressant and am occasionaly taking a sleeping pill. I need to be calm and strong to navigate these storms, and I'll take all the help I can get.
In the coming weeks, I'll begin to chronicle Lily's experiences while hospitalized. These events were ultimately helpful, but each period of in-patient treatment offered challenges that weren't of our choosing. Fear, exhaustion and frustration were part and parcel of dealing with a varying range of trained caregivers. Some of those experiences still seem surreal.