June 26, 2013

I really do love this place.  I am constantly amazed by the number of volunteers here on a daily basis and the ways in which this place clearly seems to manage their finances so well.  It is not by any means a modern or up to date facility, but they manage to update the things that are most important and care for those they can't update.  It is without a doubt the cleanest hospital I have ever been in.  Clayton and I even go barefoot in our room...and for those that know me, you know I'm a germ freak and would not dare do that unless I was confident it was clean!  

They also have activities for the kids all the time.  The other day, some of the members of the National Volleyball team came and played volleyball with the kids upstairs and one of them was an Olympic gold medalist.  And yesterday they had toys all over the clinic for the kids to pick something out and they went around to the rooms with a cart of quilts a quit guild had made for the kids.  I have to say though, MSKCC was good about volunteers too.  One of their weekly things was to have volunteers play BINGO with the kids in the playroom and bring walkie talkies to the rooms for the kids that had to stay in their rooms.  Both hospitals are great.  And whatever MSKCC lacks, this place has.  Both hospitals really should be inspirations for what a hospital should be.  Sure, they both make mistakes from time to time, but they have world class doctors and overall, they are amazing places.  

As much as I am excited about the neuroblastoma treatment we hope to do in Michigan, I am sad about not seeing our doctors in NYC again soon.  Unless Clayton relapses, we might not see them again for years because if we do this treatment in Michigan, we will do our scans with them or one of their affiliate hospitals.  Anyway, that's all of my random ramblings.

I was talking with another mom here today and her child talks to her and based off of what she was saying and my suspicions, I think the number one reason Clayton has been resistant to his traction more this past week is because he is just tired of it rather than sore because of it.  I'm sure he is a little sore, but I don't think that is the reason for his behavior.  We are seeing such a difference though.  There is still a hump when he is standing, but it does not stick out when he is standing the way it use to.  You see a dramatic difference now when holding him too.  You use to see his hump the worst when holding him...it is SOOOO much better now!  And we thought he ate good before, but now he eats like crazy!  All the time!  Seeing lots of changes.  And they just got more aggressive with his traction too; 30lbs during the day and 18 at night...