Saturday, July 7, 2012

Smiles and Secrets

After yesterday's good day, it was nice to have a repeat!

Sam's counts continue to rise, and the nutritionist was so pleased with all that he had eaten that she pulled him off his IV nutrition entirely! (It helped that during morning rounds, I could report that he was at that moment eating 3 peaches!)

Emma and Nina arrived early in the morning, with a big hug and lots of huge smiles. Emma helped Sam push his pole (for the last time!) around the floor and they put a puzzle together.
Be still my heart...
Sam and Emma in the "nest"
Then Randi arrived, bringing a special visitor to Sam, author Robert Kurson (who happens to be a very good friend of Randi's! If you haven't read his books, I can't recommend them highly enough. Incredibly engaging and fascinating stories. But I digress.) Robert told Sam the top-secret story that he is currently researching for his newest book, and it was incredible. He asked Sam if it would be a worthwhile book, and Sam vehemently said yes! (He also suggested that it be made into a movie...) He also gave Sam a top-secret gift related to the book, and it was really really really cool.
Listening to Robert tell his story, probably asking a question!
I was so impressed with Sam's listening. He paid rapt attention, asked great questions, and talked in a very grown-up way to Robert. Then he promised not to tell the top-secret story! But trust me, when the book comes out, you're going to want to read it.
Sam and Robert
We did art, had a mini-physical therapy assessment, and even spent a little time in the garden (it seemed to have cooled off a little bit and Sam liked the fresh air) after our Shabbat dinner...what a day!
The physical therapist wanted to make sure that he was okay to walk the stairs. So far, so good.
How handsome is my kid!?
There was another family out in the garden and the mom offered to take our picture. They'd been in the hospital for a week and were feeling sad about it...but they are going home tomorrow. I think meeting Sam helped to put it in perspective for them, when I told them that today was day 26!

In the garden, Sam did a little self-portraiture....
Overall, a wonderful day at the hospital. We are definitely in the wait-and-see period of this experience, and some of this is starting to feel like real life. Sure, there are nurses and doctors and Sam has a central line attached to his chest....oh, and he can't actually leave the hospital...but otherwise, the quiet optimism continues.

I keep reminding myself that this is a very long process. All the yucky parts will be repeated. More than one more time. And each time, Sam's reaction and bodily response could be different. But the pinprick of light that I started to see yesterday got just a tiny bit brighter today.
And so we wait.
And hope.
And pray...


  1. Fabulous to hear good news, and see smiles on your lovely faces. Lots of love and prayers for more good days than bad. Xoxo.

  2. What an inspiration you are to me! I'm so happy that things are going well! :)

  3. G-d willing refuah shleimah.

  4. Great post. Keeping my fingers crossed with you all!

  5. Sam looks wonderful and the self portrait is awesome!