Good evening from Children's Hospital in Vancouver.
Dec.2 update:
Ben started on his new drug last night and they are slowly weaning him from the other nasty one. He is tolerating it well and I think I can already notice a slight bit more strength in him...he has held up his head a bit more, and for a couple of seconds, he bore some weight on his legs (and that is just in one day with a lesser dose). Could I be imagining it?
He saw the opthamologist today and they could find NO evidence of any sort of eye disease so that is good news. We are to continue patching his eyes and as his brain continues to myelinate(insulate) his eyes should improve. His vision is fine (does not need glasses) but it is the interpretation of what he is seeing that we do not know for sure, and it will likely vary from day to day for now.
He will not be having another MRI while he is here, as they tell us that until he is two, there will be no significant changes and it is a lot to put him through (anaesthesia) so we will wait until after his second birthday.
They did some bloodwork and he is a little trooper... no complaining or fussing. He is eating a ton (butter chicken for supper tonight) and is smiley smiley smiley. They want to monitor him on this new drug until at least Thurs/Friday so I do not know yet how we are getting home or when, but Gary will be back tomorrow to visit for a bit. It can get a little lonely here even with all of these people around! I miss little Jordanabanana, and just want to get home, but also want these seizures controlled so I guess this is the best place to be. Should go and get myself some supper (little bugger ate it all!) Ciao.

Dec 3 email
Sure I do not mind if you post my emails.
I even slept in this morning at the hostel... getting used to the hard bed. Ben is nice and happy this morning and the doctors are happy with his reaction to the new drug so far. It sounds like we will get out Friday morning for sure, if not tomorrow.
I watched "The Patriot" last night on his little TV but it is pretty noisy in the room as there are two other toddlers who are in much pain from surgury, etc, so again we feel pretty lucky that Ben isn't experiencing any pain. But, on the other hand, these little guys are sitting up and walking and saying "mama" so I have to say that I am green with envy over that.
Oh well. He is still the cutest of the bunch!
I do have a book..."Love in the time of Cholera" (Oprah's pick) and so far it is okay... not great yet, and I bought a crossword book. There is a lounge to watch TV and, of course, a computer, so it is actually really set up great for parents. Can't complain at all. Will write tonight.
Love,
Joan and Ben