That was a quick week. We are all packed up and Matt is slumbering away, getting ready for his 4am wake up time. He has volunteered to be the 'get one last feed in before the pre-op 6 hours time limit on food', which will be a 4am - 5am fees. Oh joy. Please, please, Charlie - don't wake up. Just sleep through that feed and wake up surprisingly full from your slumber.
Tomorrow we are off to Sick Kids, leaving ridiculously early in the morning. Charlie's surgery isn't until 11am, but we have to be there by 9am for settling in. The traffic recently has been atrocious, so we are leaving realllly early in order to get there, on time and stress-free. We'd rather be early and sit together and have a tea, then be late and running around.
Here is Charlie today:
Mischievous little monkey, eh?! He's crawling EVERYWHERE. It's awesome. I so enjoy him when he's just hanging out with me in the kitchen, or we are just playing together. He loves to chase me around upstairs on the carpet (better on the knees). His giggle is infectious.
So, tomorrow is what it is. We'll update Facebook at least once, post-op, and I'll update the blog later. Keep Charlie in your good thoughts tomorrow. He's such a sweetie.
Sweet Baby James - James Taylor
There is a young cowboy, he lives on the range. His horse and his cattle are his only companions.
He works in the saddle and he sleeps in the canyons, waiting for summer, his pastures to change.
And as the moon rises he sits by his fire, thinking about women and glasses of beer.
And closing his eyes as the doggies retire, he sings out a song which is soft but it's clear
as if maybe someone could hear...
Goodnight you moon light ladies, rock-a-bye sweet baby James.
Deep greens and blues are the colors I choose, won't you let me go down in my dreams?
And rock-a-bye sweet baby James.
Now the first of December was covered with snow
and so was the turnpike from Stockbridge to Boston.
Though the Berkshires seemed dreamlike on account of that frosting,
with ten miles behind me and ten thousand more to go.
There's a song that they sing when they take to the highway,
a song that they sing when they take to the sea,
a song that they sing of their home in the sky, maybe you can believe it if it helps you to sleep,
but singing works just fine for me.
Charlie's Blog
Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.
Monday, May 28, 2012
Tuesday, May 22, 2012
Good Vibrations
Charlie goes in for his surgery one week from today. One week from this moment, I will be watching him sleep at Sick Kids, recovering from his first surgery. Matt and I have struggled with this decision, as many of you know, with the Great Tube Takeout of 2012. I still wonder (and probably always will) whether this was really the right decision. He loves his solids and is doing so well...it's possible that he'd just figure out he needs to drink, but it's unlikely and so we're left with the other, best choice.
I'm actually not worried about the after-surgery stuff. I know we'll keep the site clean, we'll have him in his little 'gay' shirt to hold down his tube, we'll probably love the pump and the time it allows him to scurry around. What we are worried about is the surgery itself. The head of anesthesia (who was lovely - which, from my albeit limited experience, seems to be a rarity in anesthesiologists (thank you autocorrect)) reallllly put the fear of god in me in regards to Charlie being knocked out. He said that because the anesthesia affects the left side of the heart more, they'd have to more carefully monitor Charlie and make sure his heart could take it, and that he'd find a pediatric cardiac anesthesiologist (and how long did THEY have to go to school for?!) to take care of him. I'm pretty sure that hour or three is going to be the longest wait of our lives.
For the next week, we are just enjoying the last of this schedule and looking forward to the next. Bring on the g-tube.
Good Vibrations - Marky Mark and the Funky Bunch
Yeah
can you feel it baby
I can too
Come on swing it (4x)
1 - 2 - 3 - now we come to the pay off
(Chorus:)
It's such a good vibration
It's such a sweet sensation (2x)
Yo it's about that time
to bring forth the rhythm and the rhyme
I'm a get mine so get yours
I wanna see sweat comin' out your pores
On the house tip is how I'm swinging this
strictly hip hop boy I ain't singing this
Bringing this to the entire nation
black, white, red, brown
feel the vibration
Come on come on
Feel it feel it
Feel the vibration
(Chorus)
Vibrations good like Sunkist
Many wanna know who done this
Marky Mark and I'm here to move you
Rhymes will groove you
And I'm here to prove to you
that we can party on the positive side
and pump positive vibes
so come along for the ride
Making you feel the rhythm is my occupation
so feel the vibration
Come on come on
Feel it feel it
Feel the vibration
(Chorus)
Donnie D break it down
Donnie D's on the back up
Drug free so put the crack up
No need for speed
I'm anti d-r-u-g-g-i-e my
body is healthy
And rhymes makes me wealthy
And the funky bunch helps me
to bring you a show with no intoxication
Come on feel the vibration
Yeah
Can you feel it baby
I can too
(Chorus)
Now the time has come for you to get up
The rest had you fed up but yo I won't let up
on the rhythm and rhyme thats designed to
make your behind move to what I'm inclined to
Pure hip hop no sell out
If you ain't in it to win it
then get the hell out
I command you to dance
I wanna see motivation
Come on now feel the vibration
It's such a good vibration
Come on come on come on
Its such a sweet sensation
Feel it feel it
I'm actually not worried about the after-surgery stuff. I know we'll keep the site clean, we'll have him in his little 'gay' shirt to hold down his tube, we'll probably love the pump and the time it allows him to scurry around. What we are worried about is the surgery itself. The head of anesthesia (who was lovely - which, from my albeit limited experience, seems to be a rarity in anesthesiologists (thank you autocorrect)) reallllly put the fear of god in me in regards to Charlie being knocked out. He said that because the anesthesia affects the left side of the heart more, they'd have to more carefully monitor Charlie and make sure his heart could take it, and that he'd find a pediatric cardiac anesthesiologist (and how long did THEY have to go to school for?!) to take care of him. I'm pretty sure that hour or three is going to be the longest wait of our lives.
So, in the meantime, we are kind of pretending nothing is happening next week. We're just hanging out - Charlie is really becoming a toddler and less of a baby every day - and enjoying the summer weather that is finally here. Partly, the living day-to-day is because we are getting our basement finished and it eats every waking thought that isn't about Charlie. when we get home from the hospital, we'll have an exercise space, a TV space, and a Charlie-dedicated reading and playing area space. Sooooo exciting.
Good Vibrations - Marky Mark and the Funky Bunch
Yeah
can you feel it baby
I can too
Come on swing it (4x)
1 - 2 - 3 - now we come to the pay off
(Chorus:)
It's such a good vibration
It's such a sweet sensation (2x)
Yo it's about that time
to bring forth the rhythm and the rhyme
I'm a get mine so get yours
I wanna see sweat comin' out your pores
On the house tip is how I'm swinging this
strictly hip hop boy I ain't singing this
Bringing this to the entire nation
black, white, red, brown
feel the vibration
Come on come on
Feel it feel it
Feel the vibration
(Chorus)
Vibrations good like Sunkist
Many wanna know who done this
Marky Mark and I'm here to move you
Rhymes will groove you
And I'm here to prove to you
that we can party on the positive side
and pump positive vibes
so come along for the ride
Making you feel the rhythm is my occupation
so feel the vibration
Come on come on
Feel it feel it
Feel the vibration
(Chorus)
Donnie D break it down
Donnie D's on the back up
Drug free so put the crack up
No need for speed
I'm anti d-r-u-g-g-i-e my
body is healthy
And rhymes makes me wealthy
And the funky bunch helps me
to bring you a show with no intoxication
Come on feel the vibration
Yeah
Can you feel it baby
I can too
(Chorus)
Now the time has come for you to get up
The rest had you fed up but yo I won't let up
on the rhythm and rhyme thats designed to
make your behind move to what I'm inclined to
Pure hip hop no sell out
If you ain't in it to win it
then get the hell out
I command you to dance
I wanna see motivation
Come on now feel the vibration
It's such a good vibration
Come on come on come on
Its such a sweet sensation
Feel it feel it
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