Well Avery did not win the "best kid on the plane" award today. She was not happy that the flight attendant wanted her to sit in her seat with her seat belt on for the whole ride and of course we were sitting at the back of the plane with the woman so we had to be good. Luckily we only annoyed the few people around us as the noise in a plane is horribly loud. After a 30 min wait on the tarmack and a 45 min circling around NY - we finally made it to the City. We stuffed ourselves - and I mean stuffed - into a cab and headed for the Upper East Side of Manhattan. Considering we really had no idea where we were going, it was nice that the cab offered a commercial screen with a map on it -- literally you can follow your route and see where you are going! And you can pay with a card!! This would have been really nice a few years back when we had to bribe the cabbies in KC to take us to an ATM on the way home to get cash, and throw in a McD's cheeseburger as well.
Ronald McDonald House is a really nice facility and our room is perfect for what we need. We have a tv and a bed and a shower - what more do you need? There is a playroom for Avery and a large communal room to just hang out in. They have 2 patios, a music room, and small greenhouse. Already Avery has begun stalking some new friends...older ones, but friends none the less. These poor kids were trying to have a very adult game of dominoes, complete with laughing, texting and swearing whenever it seemed they could use the word correctly and Avery busted in the game. Nothing better than a snoopy 2 year old kid wanting to hang out and ruin your teenage hang out. The kids were very sweet though and let her hang out with them for a few minutes - which she absolutely loved. Man she needs a sibling.
Tomorrow we have our first appt at Memorial Sloan Kettering. We walked down towards the hospital and it was actually rather close -- only about 4-5 blocks. We need to be there at 1:30 tomorrow afternoon and I don't believe we will have to be there for too long. Wednesday and Thursday we will have to go back as well to do the flow study on her CSF. They will check her flow and make sure things are moving appropriately for the injection to be effective. They will also do a dosage check at some point, but not sure when that is going to happen.
We have a list of things we want to do while we are here in the city so we need to make a plan of where everything is and when we want to see it. Daddy is not as interested in the American Doll Store and Macy's as we are. It's been a long day and munchkin is getting cranky, which means it's time for bed.