Little A is not in a good place physically. I wonder if her body knows it is just biding it’s time until we go and try to fix it. It turns out that the labs we got back so far have all been normal. The one we were most concerned about was her liver and her billirubin level. It was normal. That is very good news. But our ped thinks that it means her body is in trouble in general. She has moved from being yellow to just being extremely pale, with red-rimmed eyes and purple circles under her eyes.
Also, we have spent the entire summer with A getting 6 hours of sleep each day. Even with that little sleep, she still had an enormous amount of energy. But all the sudden this week she is extremely lethargic. She is saying things like “I can’t make it” and “I can’t go on” and “I just want to go home” We have been reading a lot of books, snuggling a lot and watching a lot of tv. Last night at 6 pm she abruptly announced that she wanted to go to bed. This is unheard of. Our PANDAS child has NEVER wanted to go to bed. We’ve spent the past year basically tricking her to fall asleep. This was the first time she has ever asked to go to bed. But her asking to go to sleep at 6 pm caused enormous anxiety for me. I was terrified she would be up for the day at 2 am. I am shocked that she slept until 5:30. I think this shows that she is in bad shape. I am very happy that we leave tomorrow.