Gosh-- where do I start? We have been so busy today-- mostly with fun things!! We left our hotel room and went to breakfast-- I think it was called "Eat Here Now"-- the usual NY diner with a catchy name!-- Then we headed to 42nd street-- on the way we were noticing lots of statue of liberty look-a-likes-- (each were painted with a different baseball team)-- So, Grier and I were on a hunt to find them-- it made the walk go by really fast-- They were on display for the All-Star Game that will be played here next week-- Anyway, we found a lot of them--!! I have pictures- but they will have to be downloaded when I get home-- I do not have the cord!

As we were walking back from 42nd Street-- we stopped in Toy R US-- and Grier wanted to ride the Ferris Wheel--- this is a first for him so I was excited he wanted to try it! We went into a great popcorn store-- Garret's on 5th Avenue and Grier got popcorn--- We continued to walk back to our hotel on 64th street and Grier fell asleep-- so we came up to the room for a quick second before we had to leave for our 2:00 appointment--- We waited a long time for our quick radioactive injection and then headed up to the PDH to sign consents for his Bone marrow test tomorrow-- It was almost 4:15 by the time we left !!! We saw Dr. Kuschner in the hall and stopped and talked to him a bit-- we asked if the CT/MRI was ok and he said he had not heard so he is assuming "yes"-- He said if something looks out of the norm they call him immediately--- Let's hope this is the case and our MIBG will be as good!

As we were leaving we an into our Social Worker-- she could and could not believe what happened in regards to our reservation at the RMDH-- this happened to 6 families this week-- She did suggest to us that we turn our receipts in to her and she will see what Sloan can do-- since the RMDH was overbooked-- I will --but also will not hold my breath-- but I guess at $400( medical rate!!) a night anything will help! We are booked for tomorrow at the RMDH-- it will be a short stay because we are leaving at 6am on Saturday--- I also asked for help in dealing with USAir-- I booked our reservation last night and used a credit I had when we had to change dates due to a cancellation-- they charged us $100 change fee per ticket--- and I talked to three supervisors pleading the case of medical reasons for the change-- they said that is not a valid reason for their company-- I hated to even use the reason-- Our social worker said she had never heard them say that before-- but since all the cut-backs everything is changing-- Even corporate angels have made lots of changes and it is worrying her--

Since we skipped lunch-- we went to an early dinner and Grier must have loved the pizza at Patsy's-- I have never seen him eat so much!! We ended up walking MORE--- Grier wanted to go to Dylan's Candy Bar-- He got a FUN DIP and has enjoyed it so much!!! I love walking in NY during the summer-- these days are LONG-- and the weather has been pleasant-- I did give a few NY'rs a flat tire today with my stroller--- they just stopped in front of me and I did not notice!!!- Oops!

We are back at the Affinia ( nice hotel --by the way!!) and getting ready to pack and settle down for the night-- I am going out one more time for a water run at the CVS around the corner-- Grier will be NPO ( no food or drink)-- after midnight since he will be under anesthesia tomorrow-- and he wants a snack-- !!

Grier said-- Mom.. we are going to be staying at 3 buildings this trip!!! He is right--- and the third and final move will be tomorrow after our procedures at the Hospital --

So-- lots of prayers tomorrow that nothing "lights" up during the MIBG scan-------And that there is a room at the Ronald!