Too Much To Hope For

So at Bean's last appointment with Dr. Sagerman in July he discussed possibly scaling back on meds when we came back in three months. That brings us to now. She sees him again October 25th. We had so much hope. We thought that we would never get here. I guess it was too much to hope for. She has been having pain for about three or four weeks now and it seems to be getting worse instead of better. She has been needing to stand at her desk at school because sitting for too long is painful. She prefers to stand up at home to color or play on the computer. I noticed this week that her left foot was turned in when she walks. Then a couple days later a limp was added to that. It has also been painful for her to have her backpack on her shoulders. It only holds a folder and a library book. Last night she was so tired and in so much pain that she had Daddy rub her magic lotion on her legs and feet and carry her up to bed. Something that he hasn't had to do in MONTHS. She also wouldn't set her left foot on the floor when she stood last night. She said it hurt her leg too much. We are back to 2-3 doses of Motrin a day. We haven't touched it in so long. This morning after a good nights sleep she seems better. But, her feet still hurt. And after coloring a picture for a bit, one of her most FAVORITE activities, she had to stop because it hurt her hands. Urgh. She has to be in a LOT of pain in order to speak up AND ask for medicine. I just wish I knew. I wish I knew what her little body feels. So at any rate, I'm guessing that this means no weaning for now. Very eager for the 25th to get here to see what he finds. See what he thinks.