Click on "Sam-isms" in the Posts by Topic list right over there ------->>
Today is another day that I will let my Facebook posts from the time stand relatively on their own.
April 7, 2012
So for a more real update than Sam flipping off the camera:
He's amazing. He has been angry and depressed since surgery. His smile has only rarely appeared. My brain knows that the combo of pain, fear, steroids, lack of sleep, and unfamiliar routine/environment can make anybody super cranky, but my fret-o-meter has been working itself into a bit of a tizzy. What if poking his little brain caused a personality shift? And this kid who's yelling at me, "I hate this. Never! I will never poop. Never! No!" is the new Sam?
Well, yesterday showed me that my little guy is still the crazy, sweet fella I have always known him to be. My friend Randi and her son Gavin were up here for a check-in with Gavin's docs. It was great to see Sam interacting with another kid and to have them tell Sam about Gavin's medical experiences. And to see him smile! I have missed his smile so much.
Physically, he's healing nicely. We're past the window for most major post-op complications from the craniotomy. His pain and need for meds are decreasing at a good rate. His vision is altered and, I think, will be something that he deals with for life. He's figuring out how to watch two TVs. I am so impressed with his resilience. His coordination, balance, and gait are changed. Partly because he's been immobile for days. PT and OT are working with him daily and I've seen improvement already. I have no doubt that, with help, he will figure his mobility issues out.
He still has an external drain (called an EVD) that's like a pressure release valve. It's been draining enough that we're planning on a surgery Monday to place a permanent indwelling shunt. The big risk that remains until the shunt is placed and healed is infection.
We've been concentrating on playing. Among many other things, we did a jigsaw puzzle yesterday and it was wonderful to see his fine motor skills improve before my eyes.
It's normally hard for me to accept, much less ask for, help. I mean, I'm the help-er, not the help-ee, right? The incredible outpouring of support and generosity that we have been receiving from friends and strangers alike has been totally overwhelming and humbling. I know we can't do this alone and the fact that you all are here rooting for us and lifting us up has made a huge difference in this otherwise impossibly difficult experience.
Thank you.
April 7, 2012 11:28pm
I love to listen to the sweet noises of a sleeping kiddo.
April 7, 2012 11:38pm
Sam just woke himself up giggling and said, "Mom! I was just dreaming and it was so funny. I was dreaming about cheese sandwiches. Hee hee.. cheese sandwiches in your ear!" He then immediately fell back asleep. I kinda wonder if he actually even woke up all the way. :)
Photo from April 7, 2012
April 8, 2012
Today is a great day. A couple of short visits with friends, wonderful treats and toys, lots of smiles, and almost no pain meds required. After nap, we'll take a walk down to the play room for some games and chill time. Our nurse today is Jamie (this is her third day with us). She jokingly introduced herself to us as the poop fairy and I must say she does have a certain diligence that is impressive. Sam has called her "poop fairy" exclusively since meeting her.
*soto voce* "Hey, poop fairy."
"Hey, Sam."
"Check out what I did in the potty."
Spring is a time of renewal. I am remembering today that each day, each second, is a gift.
My friend Teri posted: I always knew the poop fairy was real! FINALLY, PROOF! Happy spring you two<3 data-blogger-escaped-i="">
And I replied: Totally real. She's from Minnesota and she loves to scuba dive.
Photos from April 8, 2012
One eye closed to accommodate for double vision.
April 8, 2014
I was just thinking today, as I stopped the car to hop out and take pictures of some deep pink blossoms, that this is the first spring in two years during which we've gotten to spend time outside.
Next up, Chapter Ten, Recovery Continues and Shunt Internalization
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