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

Sweet Baby Charlie

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.

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.

Rock Star Baby: 'Could you keep it down? Last night was wild, man.'

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.

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

 

Monday, May 7, 2012

Adventures

The great thing about a really shitty week is that when things start to go well again, you really have to notice. My arm is better, dad is ok, Charlie is fine and my brother is recovering. Can't get much better then that.

The updates:

My arm is OK. It turns out I had ligament damage and some muscle strain, but with a little physio I'll be OK in time. It aches constantly, especially at night, and I wonder if that will ever go away. I'm sure it will, again, in time.

Dad is fine, a little sore, but fine. They 'got' all the cancer, so he's back to his old self.

My brother is recovering. He's in a lot of pain (3 brain surgeries in 4 weeks will do that to do) but other then that, he's recovering nicely. He's home (thanks goodness - he was starting to lose it in the hospital) and healing until the doting and watchful eye of my mother.


Charlie! Charlie is great. We tried a few 'tube-free' days last week to see if he would suddenly, start magically eating more and drinking, but to no avail. He couldn't keep much down (I think he eats too fast) and we were worried about him getting dehydrated, so back in the tube went.

We went from this:

To this:

Really, the experiment just let Matt and I know know two things: yes, Charlie really does need the g-tube and no, it is not forever. He clearly likes to eat, and just needs to learn how - how to know he is hungry or full, how to eat at a reasonable pace, etc. He's doing really well with textures these days (eating bit of cheese puffs, croissant, bread) but its just not enough. In time, though, he'll come around.

What an adventure this month was! May 29th, we'll start a new one.

The Adventure - Angels & Airwaves

I wanna have the same last dream again,


the one where I wake up and I'm alive.
Just as the four walls close me within,
my eyes are opened up with pure sunlight.
I'm the first to know,
my dearest friends,
even if your hope has burned with time,
anything that's dead shall be re-grown,
and your vicious pain, your warning sign,
you will be fine.
Hey, oh, here I am,
and here we go, life's waiting to begin.
Any type of love - it will be shown,
like every single tree reach for the sky.
If you're gonna fall,
I'll let you know,
that I will pick you up
like you for I,
I felt this thing,
I can't replace.
Where everyone was working for this goal.
Where all the children left without a trace,
only to come back, as pure as gold,
To recite this all.
Hey, oh, here I am,
and here we go, life's waiting to begin.
Tonight,
hey, oh, here I am,
and here we go, life's waiting to begin.
Tonight,
hey, oh, here I am,
and here we go, life's waiting to begin.
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
Hey, oh, here I am (do this with me),
and here we go, life's waiting to begin (do this with me).
Hey, oh, here I am (do this with me).

Wednesday, May 2, 2012

Pictures

Helllooooo up there... (October, 2011)

Ooo. Who's that present for? (Christmas, 2011)

I will beat the pablum outta you! (January, 2012)

...but I'm the only gay in the village! (February, 2012) (and if you don't get that joke, go here. And laugh.)

Shark bait! Oo ha ha! (March, 2012)

Blue steel. Or, 'Ladies, this isn't the only kinda 'chick' I like. *eyebrow*' (April, 2012)

Goooood morning, sleepyheads! (May, 2012)

 

Pictures - Kid Rock & Sheryl Crow

[Kid Rock]
Livin' my life in a slow hell
Different girl every night at the hotel
I ain't seen the sun shine in 3 damn days
Been fuelin' up on cocaine and whisky
Wish I had a good girl to miss me
Lord I wonder if I'll ever change my ways
I put your picture away
Sat down and cried today
I can't look at you while I'm lyin' next to her
I put your picture away, sat down and cried today
I can't look at you, while I'm lyin next to her
[Sherly Crow]
I called you last night in the hotel
Everyone knows but they wont tell
But their half hearted smiles tell me
Somethin' just ain't right
I been waitin' on you for a long time
Fuelin' up on heartaches and cheap wine
I ain't heard from you in 3 damn nights
I put your picture away
I wonder where you been
I can't look at you while I'm lyin' next to him
I put your picture away
I wonder where you been
I can't look at you while I'm lyin' next to him
I saw ya yesterday with an old friend
[Kid Rock]
It was the same ole same "how have you been"
[Both]
Since you been gone my worlds been dark & grey
[Kid Rock]
You reminded me of brighter days
[Sheryl Crow]
I hoped you were comin' home to stay
I was headed to church
[Kid Rock]
I was off to drink you away
[Both]
I thought about you for a long time
Can't seem to get you off my mind
I can't understand why we're living life this way
I found your picture today
I swear I'll change my ways
I just called to say I want you to come back home
I found your picture today
I swear I'll change my ways
I just called to say I want you to come back home
I just called to say, I love you come back home