Tuesday, September 16, 2008

New York Days with Hannah - by Judy

I wrote a wonderful blog entry yesterday all about our day, about arriving here and being greeted by Hannah - only to find out last night that there was an error on the page and it wasn't connected to Blogger, etc etc. So I have to start all over today. What a major pain!

First of all - for some reason - we are having trouble uploading pictures onto the blog. We're not really sure why this is - but for now its text only. I'm going to get John to try to make another Picassa album tonight and put a link here so if you'd like to see some pictures of Hannah then there is a way to access them.

So...three days together - its been wonderful to spend time together. I can't believe how their one week away felt like a month. I was so excited journeying here on Sunday -seeing Hannah's little face when I got here - fantastic. Yesterday we spent the bulk of the day at NYU medical centre, where Hannah is having her surgery. We met with the plastic surgery team in the morning, lovely to meet Dr. McCarthy who will be doing her distraction surgery. Everyone who works in the Institute of Reconstructive Plastic Surgery office at the hospital are the kindest, loveliest people. It has been touching to see how they all treat Hannah and to know whose hands I am placing her in. In the afternoon we met with a different plastic surgeon and a hearing specialist to discuss the possibility of ear reconstruction. This is the first time that we have had the opportunity to have this discussion as there is no one who specializes in this field in Vancouver. Interestingly enough when we mentioned that the one time, when she was three, that a certain plastic surgeon told us that he could remove her little ear whenever we wanted - the specialist here was horrified by this as, even a little ear, is important in the process of reconstruction. We still do not know if we will go the avenue of reconstruction or prosthetic - we have a few years to decide that, but it was interesting to have the discussion and hear what was said.

Last night at the "house" a church group provided dinner for all the residents. It was quite a gathering in the dining room. Hannah was briefly pulled away from the game she and her new good friend Katherine were playing to eat some food. Katherine is from Albania and is here because her sister is receiving treatment at one of the hospitals. She is a long way from home - and now has a new best friend in Hannah. I was so struck last night when I went to round up the girls from the 'living room' (huge room with half a dozen or so couches, grand piano, 14 foot fish tank, etc) where four 11-13 year old boys were playing a rowdy game of tag mixed with 'let me throw this mini-football really hard at your head'. Two of the boys didn't appear to be ill, may be siblings of other kids, but the other two boys are both bald and clearly here for cancer treatment. It was wonderful to watch them acting like completely normal boys, doing what all boys do when they get together in a huge room with a football. But sitting eating dinner a little girl, maybe 2 years old, came by holding Dad's hand, also receiving treatment for cancer and had tubes coming out from under her shirt and attached to a bag that her Dad was carrying. Just heartbreaking. So unfair seeing these little kids with cancer.

Today we were back at the hospital as Hannah was having her splints fitted with Dr. Grayson. The splints look very much like night mouth guards that people wear for grinding their teeth, but smaller and much thinner. There are three of them, top teeth, bottom teeth and then one they call the sandwich that goes in between. The splints will be bonded to her teeth during the surgery and then Dr. Grayson will use elastics to keep her jaw in alignment. To say the least these are going to cause her discomfort and distress. She will have trouble eating, talking, swallowing and sleeping with these in. And in they stay for several months after surgery. She will be returning home with these in still.

We found out quite alot more about postoperative eating today and what that will look like for Hannah and John. Its going to be really rough for the pair of them for several weeks. I wish I was going to be here to support them through this time.

So that's been our time so far. Its been mostly spent at the hospital, we're back there tomorrow, but that's why I'm here. I didn't come to sight see. It has been amazing to watch Hannah run around her at the Ronald McDonald house like she owns it. Its a very good place for her to be. She and John went to a Yankees game on Saturday (they lost) and then went to the last day of a fair in Central Park on Sunday where she went on different rides. And we also saw Celine Dion on the street yesterday just across from Central Park, she was emerging from a building and there was a huge crowd of people with cameras and video cameras. To begin with we had no idea who was there and when we asked someone who was standing watching this throng of people they had no idea either and then suddenly she stood up on the edge of her SUV and waved at everyone. Wow...and I didn't have my camera to capture the moment! Oh well.

No comments: