Pages

Thursday, September 19, 2013

Clicking -- BMT +23

Today was one of those great hospital days where it all just clicks...

A surprise visit from Officer Dale was a big hit with Sam!
Dale convinced Sam that he was the UNO World Champion and Sam was quite pleased, then, that he was able to beat him. Dale promised to show Sam his certificate (for being World Champion) next time he sees him....Sam was appropriately skeptical!

Then the fun got even bigger when another surprise (to Sam) visitor came, Rabbi Steve!
He had to join in the fun, and of course he had some silliness with the two bald heads....
Today was a big day, since Sam is now officially weaned off his morphine drip, and it was even removed from his ever-shrinking IV pole. You'll remember that he went outside for the first time about a week ago...it was quite an excursion because hospital rules require a nurse to go with Sam as long as he has the morphine drip. Today -- no drip, no nurse. It's not that we don't like our nurses, we love them! But there was something delightful about the freedom to come and go....and so we took Rabbi Steve to the Healing Garden in order to shake the lulav. Today was the first day of Sukkot, the Festival of Booths, and although we don't have a sukkah, we went outside to perform the mitzvah of lulav. Last night, Sam and I had a discussion about the Four Species, and so I was proud that he could answer all the questions that Rabbi Steve asked him about the willow, myrtle, palm and etrog! (And since I only had pictures to show him, it's nice when the learning clicks with the real thing!)
P.S. Also no mask! Sam's ANC is over 2000 and the hospital was pretty quiet when we went downstairs.
We are continuing to work on changing meds over to oral (only one IV med left, aside from the anti-rejection drugs which run on a continual drip) and eating. I'm trying all the best sneaky mom tricks I can find, but he's quite convinced that the food needs to taste good. I wish I could convince him that it doesn't have to taste good...but...have you met Sam!? But anyway, he has been drinking Carnation Instant Breakfast (not a lot, but some) and today he ate French Fries from McDonald's!
He still feels a little nauseous at times (and he's on scheduled anti-nausea meds to try and combat that) and he was definitely tired out after our walk downstairs today. But he's learning how to tell me when he feels sick, how to work around it to take meds and eat, and how to make it all come together...I think that pill-taking finally clicked for him today, he didn't throw up any of the pills and he was able to swallow them all on schedule. Yay! (I've figured out that if I tell him a random family story while he's taking the pills, it helps to distract him. I keep trying to come up with things that won't make him laugh because I wouldn't want that to mess up the pill-taking!)

Sam was supposed to start Hebrew School this year, and I know that he was a little jealous of his siblings' learning Hebrew at their school this year. So I promised that once we got into the hospital I would teach him Hebrew....truthfully, until today he didn't really feel up to much. And conveniently today, the Hebrew book that I've been waiting for arrived. Judi, our wonderful director of education, had given it to me when David was in first grade so that I could teach him the alef-bet, and now it's out of print. She did a lot of legwork to find a copy of it, and we are so grateful to the folks at Bloch Publishing who dug it out and sent it to her! Sam was so excited to begin, and he was so proud that he learned four letters and three vowels this evening!
It just clicked.

We're still here in the hospital but it's now starting to feel like he's ready to be out in the real world. Things are coming together, he's feeling well and has a lot more energy. It's only 23 days after his whole world changed, so I shouldn't expect too much of him, right?

Slow and steady....one day at a time....

6 comments:

  1. Sounds like you guys had a really great day. Wishing you many more and sending lots of xoxo from NYC.

    ReplyDelete
  2. so happy to hear about your wonderful day!

    ReplyDelete
  3. Hi, I've been reading about Sam through a friend who shares your posts on Facebook and came across your comments about how hard it is to get Sam to take icky medicine. When I was 5, my 3 year old brother was diagnosed with Leukemia and I remembered my mom having to do some serious work trying to make taking the meds tolerable. Tonight, I asked her what it was that worked and this is what she said.
    "In a teaspoon, a drop of water to sort of dissolve the pill and then fill the rest of the spoon with maple syrup". She seemed to have some luck with this. Keep up the good work, you all are amazing.
    Amy

    ReplyDelete
  4. Hi, I've been reading about Sam through a friend who shares your posts on Facebook and came across your comments about how hard it is to get Sam to take icky medicine. When I was 5, my 3 year old brother was diagnosed with Leukemia and I remembered my mom having to do some serious work trying to make taking the meds tolerable. Tonight, I asked her what it was that worked and this is what she said.
    "In a teaspoon, a drop of water to sort of dissolve the pill and then fill the rest of the spoon with maple syrup". She seemed to have some luck with this. Keep up the good work, you all are amazing.
    Amy

    ReplyDelete
  5. That is a whole lot of awesome....thanks for sharing. Sending love and prayers.
    xo,
    -m

    ReplyDelete
  6. new life
    amazing
    bli eyin haraa
    refuah shleimah

    ReplyDelete