Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Tuesday, May 21, 2013

(Green) Eggs and Ham

Last week, Charlie stopped eating. Like, entirely. All he would have was fudgicles and Timbits (doughnut holes, you Americans). He was miserable, cranky, depressed and sleeping a lot. We think we was sick.
And then, just like that, he came out of it - starving. All we've heard since last Friday is 'dindins?!' at every mealtime. We cut out the snacks - I guess that's helped - but his appetite seems to have discovered itself. It is such an exciting time.
He loves strawberries. Blueberries. Banana. Ham. Chicken. Pasta. Hummus. Crackers. Avocado. The list goes on and on. We are trying new things daily, and it's all so exciting. We think he's gaining weight and can't wait (pun intended) for our visit to Sick Kids next Friday - provided this keeps up.
That's the worst part, I think, about what's happened to Charlie and us - you're always waiting for the other shoe to drop. So he's eating? Wait until next week. Don't get excited, because it will probably end. It's an awful way to view life, and I sincerely hope it doesn't last forever. Charlie is doing so well - we're just living in the moment and taking it all in.

Fudgicle time.
Green Eggs and Ham - Moxy Fruvous

Hey kids, listen up if you want to be sick
'Cause your dinner looks like something from a Cronenburg flick
Think twice before you cuss and shout "damn damn damn"
Let me tell you a story about green eggs and ham.
There was a little yellow man called Sam-I-Am
That's me!
I don't like you, Sam-I-Am
Well, that's fine, that's cool, I understand
But do you like green eggs and ham?
I don't like green eggs and ham
No, I don't like 'em, Sam-I-Am
Would you like them here or there?
I wouldn't like them anywhere
'Cause I do not like them, Sam-I-Am
No, I don't like green eggs and ham
Would you like them in a house? Would you like them with a mouse?
Maybe you can't hear, you got something in your ear?
I'm gonna make this perfectly clear
I would not like them in a house, I would not like them with a mouse
I would not like them here or there, I wouldn't like them anywhere
'Cause I do not like them, Sam-I-Am,
No, not for me, green eggs and ham
Would you like them if I served them to you in a box
Candlelight, wine and a bottle of scotch?
Yeah, some soft lighting, soft music, maybe some Fred Penner on the
Not in a box with a fox or a house with a mouse
Stop bugging me, you louse!
I would not eat them, no, man, I don't like your green eggs and ham
Well, would you could you in a car, eat them, don't deny who you are
He's gonna like them, you're gonna see
You might like them up in a tree
No, not in a tree, not in a car, would you let me be
No fox no box no house no mouse, not here, there, or anywhere
'Cause you guessed it, I don't like green eggs and ham
I don't like 'em, Sam-I-Am
A train, a train, a train, a train! Would you, could you in a train
Or up in an aeroplane?
How 'bout in the dark? We could drive and park
We could listen to the crickets and the pit bulls bark
No, not in a plane, not in the dark, not on a train, not in a car, not up a
'Cause I don't like 'em, Sam, see,
Not in a schoolhouse or a shoebox with a house-mouse or a red fox
Not here, there, and everywhere
Didn't even like the Beatles with their long, long hair.
Hey! You lay off the Beatles, buddy! ...
Well, you don't like green eggs and ham
Oh, Mr. Perception, Sam-I-Am
Well I know that you'd like 'em if you ate 'em with a goat!
I would not could not with a goat
Well would you could you on a boat
I would not could not on a boat
And I will not ever with a goat
I'm not interested in stuffing face in the rain, on a train, I should
Introduce you to my friend pain
Not in the dark, not up a tree,
Not on your fine china with Earl Grey Tea
No boxes, foxes, houses, mouses, husbands and wives - no spouses!
Why you trying to make me eat that?
I don't like it, I wouldn't serve it to my cat
I said already, I don't like them, Sam-I-Am,
I do not like green eggs ham!
Mr. Cheese! You just think you don't like them, so you say
And he's beginning to remind me of Doris Day
You say you don't like this and you don't like that
Well you're starting to sound like a finicky cat
Just try them, try them, and you may find you like nothing better than
Two greenish eggs over easy in the fry-pan
And to accompany this fine taste we have Martian ham - pork from space!
Now Sam, if you get out of my face
I'll try that and puke all over the place (good!)
Nothing makes a crowd disperse more quick
Than a great big puddle of sick!
Say...say...not bad, green eggs and ham
I believe I like them, Sam-I-Am
And I'd eat them in a boat, with a billy goat,
I'd eat them in the rain in the dark on a train
In a car, up a tree, they're pretty good, you see
So I'd eat them in a box with a fox
I'd eat them in a house and with the house-mouse
I'd eat them here, I'd eat them there
I'd eat them in my Fruit-of-the-Loom underwear
I think you're ok, Sam-I-Am
Well, I wouldn't let you down, you stubborn old man!
Hey, we should share them, eh, we got enough
..Are you kidding? I don't eat that stuff!

More lyrics:

Carry On.

I know it's been a while since I last posted (I knew promising to post once a month wasn't going to go as planned!) so please accept two posts on the same day. First off, the one I should have written over a month ago...

April 12th, 2013

Today was a Sick Kids day! I remember reading something when Charlie was first diagnosed about how it helps kids if you are excited (like, Disney-excited) about going to the hospital. We decided to try that with Charlie, hopefully making the whole experience a little less stressful. Needless to say, it is very difficult to pretend that going to the children's hospital is fun, but off we went, singing songs in the car and clapping about all the 'old friends' we got to see - Kristen, Judith, Louise - oh my goodness!
Charlie had a scheduled, sedated 7am echo and once that was over, we had visits with our cardiologist (Good ol' Dr.D.), our dietitian (who I speak to on the phone, weekly, but never see) and our genetic counselor (to discuss the possible planning of future children!). We arrived early ('better early then late' is our motto!) and sat around for a bit in Tim Horton's, waiting for 6:50am. We went up, they knocked him out, and did the echo. They had to put a little oxygen mask on him because he wasn't SAT-ing enough, but other then that (which I guess is common?), no complications.

Out like a light.
When we woke up, he was an angry, drunk little bugger. He wanted to sit up, but he couldn't. He wanted to stand, but fell over. He did NOT want to lay down, but that's pretty much all he could do. Matt and I laughed behind our hands at him, but felt sorry at the same time. He was like that guy who's had too much to drink at a party but is all, "Ohhhhh I'm FINE. Gimme ma car keys, I gotta go hooooommmmmeeee.". Poor dude. He just wanted to MOVE, so Matt walked around with him while I got to sit and chat with the adults.
"I'm naht drunk...just gimme ma keys..."

Dr. D. and Kristen were pleased with his results. Dr. D. said she didn't want us to think his heart was normal (who would think that?!) but that it was definitely improved. I asked Kristen after for his Ejection Fraction number - at last check it was 22% and we were hoping for 30% - and it was 38%! We were so pleased (although they tell you 'not to focus on that number', it's often indicative of how the heart is doing). The Sick Kids staff was pleased too, which is telling.

The meeting with the genetic counselor went well, as did the meeting with the dietitian  we had a lunch out and were home by nap time! Overall, a great day at the hospital - not quite Disney but still pretty good. :)

Carry On - fun.

Well I woke up to the sound of silence
And cries were cutting like knives in a fist fight
And I found you with a bottle of wine
Your head in the curtains
And heart like the Fourth of July

You swore and said,
"We are not,
We are not shining stars"
This I know,
I never said we are

Though I've never been through hell like that
I've closed enough windows to know you can never look back

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

Carry on, carry on

So I met up with some friends at the edge of the night
At a bar off 75
And we talked and talked about how our parents will die,
All our neighbours and wives

But I like to think I can cheat it all
To make up for the times I've been cheated on
And it's nice to know when I was left for dead
I was found and now I don't roam these streets
I am not the ghost you are to me

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

My head is on fire but my legs are fine
After all they are mine
Lay your clothes down on the floor
Close the door, hold the phone
Show me how no one’s ever gonna stop us tonight

'Cause here we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
Sun will come
We will find our way home

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on


(No one's ever gonna stop us tonight)
(No one's ever, no one's ever gonna stop, no one's ever gonna stop us tonight)
(No one's ever, no one's ever gonna stop, no one's ever gonna stop, no one's ever gonna stop us tonight)