Sunday, October 31 - Day +18

The last few days have been medically boring, which is the best kind of day you can have in the hospital. Collin sleeps a lot day and night, which I think is in large part due to the Risperdone, but he needs the rest, so right now it's a good thing. The tremors seem to have stopped for the most part; but we don't know if they are really gone, or if the Risperdone has stopped them. He is off the oxygen completely, and is having no trouble maintaining his O2 sats. He is slowly losing the extra weight he gained because of the fluid in his abdomen, and his abdominal circumference is also slowly dropping. We had to bring size six diapers in from home because the size fives he was using suddenly didn't fit when his belly was so distended, and even then the size sixes barely fit; now they are fitting more normally. He has been afebrile for days, and is off the IV antibiotics. His white blood cell count has dropped to a more normal level, which also means he is free of infection. He has started to take some juice off a spoon, and is keeping it down better than he was a few days ago. He still requires occasional transfusions of blood products, mostly packed red blood cells or platelets, but they are not as frequent as they were. His ammonia level is slowly dropping, as is his bilirubin level. He may have another doppler of his liver some time this week to check the direction of the bloodflow through it, and if that shows improvement, he may not need the full twenty-one day course of Defibrotide. He has stopped rubbing his eyes as vigorously as he was, and although I'm sure his right eye feels better as the corneal abrasion heals, another thought occurred to me yesterday: all of the tiny eyelashes (and eyebrows and hair) that had started to grow are gone again, and maybe the eyelashes were itching his eyes as they fell out. Now that I think about it, I think the same thing happened the first time he lost his eyelashes in May or June. And surprisingly in the last two days, we have noticed even more of an improvement in his left eye; it seems to be turning out to the center more and staying there for longer periods of time. It makes me wonder how much his vision has changed (if at all), because now he puts his little hand up to his forehead sometimes, almost like he may have a headache or feel dizzy. Oh how I wish he could tell us! Overall, he seems to be making small improvements every day. I feel a lot better about things than I did in the beginning of the week, and have even managed to get some sleep. Thank you all for your prayers, support, encouragement, and well wishes! You have helped hold me up when I didn't think I could stand anymore!