I'm so tired.

Who knew there was a song - a Beatles song, at that - that had the perfect title for how I'm feeling right now?

The day-to-day drudgery that is Charlie's schedule is getting to me today. I didn't even have anything else do to - its not like I wanted to go out and couldn't because of a barf or a nap. I'm just realizing, slowly, how long a battle this is going to be.

Charlie (and thus, I) spend 4 hours a day, minimum, 'on the drip' (his NG tube/ gravity set). We sit from 6-7am, 10-11am, 2-3pm and 6-7pm). Then, I sit, alone with my iPad, from 10-11:30pm, dripping in the final feed. This time does not include getting his solids into him three times per day, right before these structured feeding times. I have been doing this with Charlie since August. Every. Single. Day. I make an effort to get out of the house from 3-4:30pm, because we have to be home by 5pm for medication. I like structure and I know it's good for Charlie, but this is definitely too much of a good thing.

Lately, and I don't know if I'm getting sick or what, but I have just been so frustrated with...everything. I have a smidge of a sore throat and I'm finding it really difficult to wake up from my morning nap. I'm feeling run down and a bit sad again, and I don't know why. Charlie is progressing well, walking and moving around, and usually happy. I really think I am just tired. Soul-tired.

Today was not a great day. Charlie is recovering from his vaccines last week, and the MMR shot has affected both his mood and his ability to keep food down this week. Today, he threw up half of his morning feed, and then his solids at 2pm (fairly rare for him to throw up solids). Then, he would have kept down his 2pm bottle, but he decided a navy blue thread on the carpet looked delicious, and so in his mouth it went. Of course, this elicited a barf. I was so mad. The rest of the day was fine, but I really don't think Matt can understand how tired I actually am, all he time. I am hoping tomorrow is a better day.

It'll have to be a better day, because I get a night out! I am going out with my sister-in-law tomorrow night to see Gotye. If you haven't heard this song yet, give 'er a go. It's great. We get to have dinner out too! There is nothing I like better then dinner downtown at a brewery. :) I intend on imbibing a little. I am being driven home.

If we look at the positives today, it could have been worse. We switched out Charlie's tube, which becomes better every time. He did keep down more then he was before we altered his feeding amounts (rather then doing 5x175 mLs, we now do various amounts depending on the time of day - less in the morning, more at night). He was in an ok mood for most of the day. Super chatty.

That said, I honestly hope he's an asshole tomorrow night while I am out. It is so unfair that I get all the bad moods. ;)

I'm so tired - The Beatles

I'm so tired, I haven't slept a wink
I'm so tired, my mind is on the blink
I wonder, should I get up and fix myself a drink?
No no no

I'm so tired, I don't know what to do
I'm so tired, my mind is set on you
I wonder, should I call you? But I know what you would do

You'd say I'm putting you on, but it's no joke
It's doing me harm, you know I can't sleep
I can't stop my brain, you know it's three weeks
I'm going insane

You know I'd give you everything I've got
For a little peace of mind

I'm so tired, I'm feeling so upset
Although I'm so tired, I'll have another cigarette
And curse Sir Walter Raleigh
He was such a stupid get

You'd say I'm putting you on, but it's no joke
It's doing me harm, you know I can't sleep
I can't stop my brain, you know it's three weeks
I'm going insane

You know I'd give you everything I've got
For a little peace of mind
I'll give you everything I've got
For a little peace of mind
I'll give you everything I've got
For a little peace of mind

Crazy & A Much Better Day

Two topics this evening: 1. "Am I out of luck? Perhaps I am just crazy." and 2. "A much better day". Let's begin, shall we?

1. Am I out of luck? Perhaps I am just crazy. Does anyone else think that they are 'lucky' in their day-to-day lives? I'm talking little, tiny things, like getting the dirty clothes IN the hamper when you throw them across the room, or the tea bag doesn't hit the floor when you accidentally fling it across your kitchen, or the paper jam in your printer is easily fixed. I have always considered myself one of those kinds of 'lucky' people. Just to be clear: I am aware that I am lucky to have a great family (two, really), a wonderful husband, an adorable child, a fantastic education and a career I find fulfilling. I'm not talking about those things. I am talking about the tiny, miniscle things that make up an ordinary day. Like winning a draw at a fundraiser. Or spellcheck getting your word right every time. Or, once you are a mum, not getting poop on your hands when you change a diaper.

I feel like these things suddenly stopped happening for me.

At first, I thought it was a shift in my perspective. Have a gone from a 'glass half full' to a 'glass half empty' person because of Charlie's diagnosis? I don't think so. So, I started paying more attention to those little things - its hard to not pay attention when you're suddenly making more messes and mistakes then before. I noticed that, yep, I was missing shots more often then I was getting them in, spilling things, getting poop on my hands, etc. WAY more often then before. Before what? Before Charlie? His diagnosis? Being pregnant? I can't be sure when it started, (or stopped, rather) but it seems that kind of luck has run out for me. I wonder if it's the lack of quality sleep I get, but then how would that affect winning things? Or my paper jam? No, I definitely think luck has turn it's back on me. So, the question becomes, why?

Here's what I am hoping: when Charlie was really sick and in the hospital, I divorced and made up with god (God?) several times. During one of the times we were on speaking terms, I offered to swap anything - pronounced EN-EE-THING - for Charlie to get better. I think my luck has been taken and given to Charlie. I think it's taking extra attention from whoever/whatever to make him well, and well he is getting.

So now you see where the crazy part comes in.

Anyways, that's thought #1 for today.

2. Today was a much better day. Since I last posted, Charlie has gotten over his terrible reaction to his vaccines. Whoa, that was brutal. Poor dear didn't know what to do with himself. You could tell he noticed feeling better when we woke up on Thursday - he opened one eye and cautiously stretched one arm over his head, and then the other, and then both eyes popped open and he gave me a HUGE smile. He has been in a pretty good mood since then, and then today, this happened. I could not believe it.

This child is, clearly, not going to crawl. Thank you, Nannie and Grandpa, and Fisher-Price. :)

Crazy - Gnarls Barkley

I remember when, I remember
I remember when I lost my mind
There was something so pleasant about that place
Even your emotions have an echo in so much space

And when you're out there without care
Yeah, I was out of touch
But it wasn't because I didn't know enough
I just knew too much

Does that make me crazy?
Does that make me crazy?
Does that make me crazy?
Possibly

And I hope that you are
Having the time of your life
But think twice
That's my only advice

Come on now, who do you
Who do you, who do you, who do you think you are?
Ha ha ha, bless your soul
You really think you're in control?

Well, I think you're crazy
I think you're crazy
I think you're crazy
Just like me

My heroes had the heart
To lose their lives out on a limb
And all I remember
Is thinking, I want to be like them

Ever since I was little
Ever since I was little
It looked like fun
And it's no coincidence I've come
And I can die when I'm done

But maybe I'm crazy
Maybe you're crazy
Maybe we're crazy
Probably

It's a good day - Peggy Lee

Yes, it's a good day for singing a song,
and it's a good day for moving alone; (ALONG)
Yes, it's a good day, how could anything go wrong,
A good day from morning' till night

Yes, it's a good day for shining your shoes,
and it's a good day for losing the blues;
Everything go gain and nothing' to lose, (TO GAIN)
`Cause it's a good day from morning' till night

I said to the Sun, " Good morning sun
Rise and shine today"
You know you've gotta get going
If you're gonna make a showin'
And you know you've got the right of way.

`Cause it's a good day for paying your bills;
And it's a good day for curing your ills,
So take a deep breath and throw away your pills;
`Cause it's a good day from morning' till night.

Bad day

Charlie had his one year immunizations yesterday, and he was amazingly good about them. With the first shot, he literally gritted his teeth and just looked at the nurse as though he was saying, 'you bitch.' I should have known something bad was around the corner - we don't seem to get off easy!

This morning Charlie was SUPER sleepy, which is rare but not unheard of. We've had a weird, busy couple of days, so ok, you're tired. As SOON as I picked him up, though, the shrieking began. And it didn't stop. All. Day.

His arms hurt - I get it. I remember once, I think I was 10, I had a booster and holy shit! did my arm hurt. I remember my mom telling me 'oh god, Kristina, it can't be that bad. And if it IS that bad, you'll have to move it before it'll get better! So stop complaining!'. If I could have said that to Charlie today, I would have. There is only so much 'oooo, you're ok, let's snuggle' one can say, people. I hit the limit today.

So, all day I had a whiny baby. Oh my goodness, the child whined about everything. Plus, he couldn't seem to make up his mind as to what he wanted to do! 'I wanna be on the floor! Whaaaaaa!' 'Gimme that toy! I said THAT TOY! Whaaaaaaa!' 'THAT TOY! Whaaaaa!'. It just went on and on. Matt couldn't believe it when he got home. This was not our child. Plus, he barfed a TON today - apparently, one of the side effects of the vaccinations can be nausea, but nausea for Charlie means barfs because he doesn't have anything stopping the barf from coming up! So, lots of clean up today. He even threw up his solids, at which point I (actually) threw in the towel and just snuggled him for the rest of the day.
I'm now wondering if tomorrow will be worse. I seem to remember my arm getting sorer and sorer until it just stopped being sore. Hm.
So, that was my day. How was yours?

Bad day - Daniel Powter

Where is the moment we needed the most
You kick up the leaves and the magic is lost
They tell me your blue skies fade to gray
They tell me your passion's gone away
And I don't need no carryin' on

You stand in the line just to hit a new low
You're faking a smile with the coffee you go
You tell me your life's been way off line
You're falling to pieces every time
And I don't need no carryin' on

Because you had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
The camera don't lie
You're coming back down and you really don't mind
You had a bad day
You had a bad day

Will you need a blue sky holiday?
The point is they laugh at what you say
And I don't need no carryin' on

You had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
The camera don't lie
You're coming back down and you really don't mind
You had a bad day

(Oooh.. a holiday..)

Sometimes the system goes on the blink
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I'm not wrong

(yeah...)

So where is the passion when you need it the most
Oh you and I
You kick up the leaves and the magic is lost

Cause you had a bad day
You're taking one down
You sing a sad song just to turn it around
You say you don't know
You tell me don't lie
You work at a smile and you go for a ride
You had a bad day
You've seen what you like
And how does it feel for one more time

I'm shipping up to Boston

I feel sad every time I leave Sick Kids. I don't know why. I'm excited to go and sad to leave, and I think it should be the other way around. I wonder if it has to do with the fact I know we'll always come back, or if I feel a sense of protection there...I just always feel sad when leaving.

Our trip yesterday was excellent, even if it held some slightly disappointing news. We left home at 7am (well, 7:20 by the time I got my act together), and because it was a Friday and it was March Break we flew down to Toronto. We were in 4A, the clinic ward, by 8:20, awaiting Kristen. Charlie played shy when he first saw her but warmed up quickly - I think he's starting to know her and Judith. Judith stopped by the say hi, which was great (Charlie remembered she was the one who taught him to blow kisses, and blew a few her way for effect). He was weighed (9.205 kg) and measured (71.5cm) and the staff were very happy with his progress. We saw the g-tube people (for, like, over an hour!) and we got our surgery date: 'early JUNE'. Ug.

All-in-all, it was a fine day. We were disappointed that the surgery is so far away, but it's going to happen, and in the meantime we have some new tricks to up the calories in his solids (adding cream, and oils, to his solid foods). I still wish we could just take out the tube and see how it went for a week, but alas, apparently we can't. :(

Today was St. Patrick's Day, as well as a birthday party for Nannie! We had a very nice day with lots of members of the family, including Buddy, our favourite canine. Happy St. Paddy's everyone!

I'm shipping up to Boston - The Dropkick Murphy's

I'm a sailor peg
And I lost my leg
I climbed up the topsails
I lost my leg
I'm shipping up to boston
(whoa oh oh)
x3
I'm shipping off
To find my wooden leg
I'm a sailor peg
And I lost my leg
I climbed up the topsails
I lost my leg
I'm shipping up to boston
(whoa oh oh)
x3
I'm shipping off
To fing my wooden leg

I don't know

Happy 5th anniversary, honey! Let's...get our wills done! And so began my week. I know it's a good thing to do, but man, after thinking about death so much last year, today was tough. I found it much harder than I thought I would to put everything down on paper.

The lawyer we dealt with was a sub-lawyer of our actual lawyer, who is great. This new guy, Mike, was appropriately somber, and I think I made him uncomfortable with my 'hey, everybody dies' attitude. His handshake sucked, just for the record (side note: training from my mother has made me want to say to people when they have a shitty handshake, "Don't you realize that your limp-fish handshake makes people think you are weak, less trustworthy and flippant? Here, let me show you what a good handshake feels like. See? Now you try. Ahhh, much better." History has taught me NOT to do this. Still, it drives me crazy.), but he was very nice.

So, we put everything down on paper. It's amazing the things you DON'T think of. We had thought of who would get Charlie if we both died, but other than that...jewellery? Assets? The cottage in Muskoka....oh wait.

Seriously, though, who this about what they want their funeral to look like? I've meant to make a cd for years now with 'funeral music' on it to play at a par-tay celebrating my life, but every time I thought about it I just got upset. With a will, you really have to think about what it'll be like once your eyes don't open again.

Anyhoo. Tough day. Also, awesome day, because the in-laws came and babysat Charlie so Matt and I could go to the lawyers by ourselves. We also went to Old Navy! We got an ice cream! It was nice, spending time with just Matt. Weird, but nice. It's March Break, so Matt is home and that's lovely too.

On Friday, I get to go out with a friend for dinner and a concert at our old university stompin' grounds. I cannot WAIT for that. So, all in all, a good week.

Wait - you want to know about Charlie? Why? Oh, because that's really why you read this blog. Well, the kid continues to astound. He is still just scooching, but there is some indication he may be up on all fours sooner rather then later. He can sit up from lying down now (a major accomplishment) and continues to progress every day. Our g-tube consult is Friday, and I can't wait to get our surgery date. I sincerely hope the g-tube makes life more...normal. He's great, though, and still freaking cute.

I don't know - The Sheepdogs

Never have I heard

A more disturbing word

Holdin' out for long

I never felt so quite disturbed.

I get up in the morning now, I don't know

Waiting for the evening now, I don't know

Been lookin' for whats comin' now, I don't know

Would somebody please, help me.

Lookin' back at me

There's more than mystery

Letters and pages of

Ancient history, yeah.

I get up in the morning now, I don't know

I've been waiting for the evening now, I don't know

I've been lookin' for whats comin' now, I don't know

Would somebody please, help me.

I don't know, help me.

I don't know, I don't know, help me.

I don't know, help me.

I don't know, I don't know, help me.

I don't know, help me.

I don't know, I don't know, help me

Happy Birthday

I had just typed out a post about Charlie's birthday as well as some other stuff, and blogger deleted it. Damn it!

Ok. Deep breath. Try again. Before the drip is done.

We are halfway through Charlie's Birthday Weekend Extravaganza. It's going really well - we put a lot of work into decor, food, cakeS (yea, that's right), and presents. He is having a great time, although he does not know what's happening. He does know a lot of people are smiling at him, though, and he is getting new stuff. Very exciting. Today we hosted my family, and tomorrow, we host Matt's. Charlie is being spoiled rotten, just like he should be. He even had a teeny bit of cake and icing, which elicited a gag but not a barf, and thus will be called a success.

We also hosted Charlie's aunt Jen and uncle Craig, and Charlie's future wife Miss Winnie (Gwenyth) today. We had a lovely brunch, and the babies got some interaction/ touch each others faces time. So adorable. Charlie showed off by scooching all the way around the couch and into the kitchen! Impressive.

As for me, I'm actually pretty worried about Charlie right now. I'm not convinced he's gaining weight as he should (two months between hospital weigh-ins is not enough for me!). I had him weighed last week at our doctors office and he was 20lbs, 4oz, about a pound off where I thought he'd be - but then, I honestly can't remember what his last hospital weigh in was, so I don't know where I got the magically new numbers from...I'm also a bit worried because Charlie (mentally prepare for an overshare) peed out a tiny bit of blood overnight on Thursday night. Everyone says not to worry about it (our NPs and cardiologist say since it hasn't repeated, it's not a big deal), but I wonder about his blood thinner levels, or if he has a UTI.mi always wonder if the doctors are missing something...I'm sure I always will.

I think that'd all normal neurotic mom stuff though, now that I read it.

To end on a happy note, Charlie is having some super high-energy days lately, which may correspond to his heart getting better. When transplant kids are healing, they have peaks and valleys of energy because of their new,mimproved oxygen levels. There is a theory that the same thing happens with kids whose hearts are healing. Fingers crossed.

Happy birthday, little man. You are very, very loved.

Happy birthday (who cares who wrote this?)

Happy Birthday to You
Happy Birthday to You
Happy Birthday Dear Charlie
Happy Birthday to You.

From good friends and true,
From old friends and new,
May good luck go with you,
And happiness too.