These are the times I will remember...

Part of the reason I keep this blog up is because I want to have some sort of record of Charlie's childhood. Today was a wonderful, completely average, amazing day, so I am going to list the memories we created.

1. I took Charlie to see Matt at work, and to meet my class at school. Everywhere he went, he was greeted by screeching girls whom only dogs could hear. At one point, I caught myself rolling my eyes and thinking 'This must be what going out in public with Justin Beiber is like.' He is an attention magnet and he loves it. I am curious to see if that tendency continues as he grows up - if he likes it, not the screaming girls (I think they'll end once he is 4 or 5).

2. Charlie wanted to be Cookie Monster all. day. long. He only grudgingly took off his costume's hat (googly eyes) when I told him he didn't want to get his hat all sticky with lunch. He was sweaty underneath but apparently his dedication to the character overwhelmed his personal comfort.

3. I made him Halloween breakfast (banana ghost and pumpkin toasts), lunch (Jack-O-Lantern plate) and dinner (Mini ghost pasta and star shaped cucumber). I hope he reads that when he's older and know how much someone has to love someone else to theme three meals for them.

4. Charlie was scared by the scarier costumes tonight, and kept taking my hand and saying 'OK, enough candy, home now.' When a Scream mask came to the door, he opened the door and said, 'Trick-or-NOPE!' and tried to close the door in the poor kid's face. Well played, Cookie Monster. Well played.

5. We practiced ALL WEEK that when you go up to a door you say 'Trick-or-treat' and when you leave you say 'Thank you and happy Halloween!'. Charlie got all of it right, except he kept forgetting to say the 'happy Halloween' part - instead, he'd say, 'Trick-or-treat! Thank you! Happy birthday!'.

Happy Halloween, everyone.

Charlie as a pumpkin for his daycare party. The 'hat' didn't last long.

Nom nom nom. COOKIES!

Echo...echo...echo...

Today was our bi-annual checkup at Sick Kids. We arrived at 7:30am, and Charlie had his echo at 8. He was SO good for it - never thought I'd say this, but thank God for Toopy and Binoo. We made jokes about a 'warm liquid goo phase' (they nuke the ultrasound goo!) and it was generally an OK time. Our tech was awesome and quick (key part there: quick) and we were out by 8:40am or so.
Then we waited...and waited...and waited! Our appointment for clinic was supposed to be at 9am, but both our nurse practitioners were away, and Dr. D was on rounds...we saw a doctor, finally, at 11:30am. In the meantime, we visited our buddy Sophie, saw Louise our dietitian, and played with the iPad (thank you, Apple) and a new Cars toy (Finn McMissile). Again, Charlie was a rock star.
The news is: his heart basically stayed the same. One measurement was better, one was slightly worse - but because he grew and his heart didn't get proportionately bigger, it was 'better' all around. Unfortunately  the hope for today didn't come true - he is not coming off the Warfarin, since there is still the risk of getting a blood clot and he's not a particularly 'bruisey' child (not overly active for a 2 year old). They also shocked us by telling us Charlie doesn't need another echo for a YEAR! Bad news: Warfarin for another YEAR. Good news: we are down to yearly echos. We'll take it!

We also went to Panera for lunch and Charlie ate a whole kid's size macaroni and cheese. Geez, that is good stuff (ok, Charlie ate a kid's size mac and cheese minus one Mummy-sized-bite. Sue me.). ;) Traffic sucked on the way home. What else is new?

Happy Thanksgiving, Canadian friends. We certainly have a lot to be thankful for, year after year. 

Charlie and Mummy, echo-ing and rocking out to Toopy and Binoo.

New Page

So, I deleted my Facebook - I could almost hear the collective gasp from the Inter-world. I try to be self-aware enough to know when something is becoming a problem, and Facebook was definitely a problem. So, I gave it up. It's going to be difficult to organize things now - I had a Christmas baking exchange on there, as well as pretty much my entire triathlon material, and I also belong to the Children's Cardiomyopathy Foundation, to which belongs friends I will miss. But, even considering that, it's worth it: Facebook is developing a 'face profile database', in which any photographs you put on Facebook are scanned and added to a huge database of faces, which Science is quickly realizing are as individual to us as fingerprints. Minority Report, anyone? Anyways, between that and the fact there were WAY too many people I 'couldn't' delete (read: would get pissed off should I delete them), and the fact I was spending wayyyy too much time on it, Facebook had to go. Good news for those of you not on Facebook, because I'll update the blog more often. Theoretically.

The Coles Notes of our life over the past few months: the summer was great, as Matt was home and Charlie and I were glad for that. We went to Winnipeg to visit Charlie's godparents, and Charlie did well on his first plane flight (although thank God for Toopy & Binoo, without whom it may not have been so pleasant). We did a few weekends away at friend's cottages, and got things done around the house. Matt built a fence, then a gate, then a deck skirt. We had a screen door installed. It was all very suburban and lovely.

In September, I headed back to work part-time (.7, which is 3.5 days a week). I am teaching grade 4/5 half-time (fantastic) and Instrumental Music (ha!). Although technically qualified for Music, I haven't done it in a long time and am selling myself to the kids as 'organized but talentless' so they expect less. So far, it's great - I was lucky to find an amazing little school in which I fit in well.

Charlie continues to grow and flourish - he is talking in almost-sentences now, and is quite able to tell us what he wants, when and why. He has recently started doing 'chores', for which he gets 'monies'. He can make $3.50 a week! Half his money will go in his RESP, but the other half he is saving his money for a 'new car'. THAT trip to Wal-Mart will be hilarious!

He's gotten to be quite the little actor, too. Case in point. He also picks up everything we say, which then gets repeated at the strangest times. Like this little ditty from last night.

My goal for the new updates is weekly, on my half-days-off. See you in a week!

To donate...

Apologies for not updating this blog with the donation link. Big thanks to Ellie From Church and Neighbour Michelle for reminding me! I've added a permanent link on the side, too, so even if I add a post you can still donate.

Here it is - just click and then press 'donate now'. Thanks!

Click here to donate now!

Exciting news...

...we're famous!

http://www.durhamregion.com/community-story/3920409-bowmanville-charlie-s-angels-ready-to-swim-cycle-and-run-for-sickkids-hospital/

Welcome!

The blog is getting a re-do for the time being, readers - we are going to use this space more for advertising the upcoming triathlon and keeping people updated on those goings-on. Of course, I'll still be writing about Charlie and his adventures for ALL those who want to read! Exciting new direction!

If you have Facebook, feel free to 'like' us at: our Facebook fan page. Otherwise, follow us on this very blog! :)

(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?
No
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
Blaster...
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
Tree
'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: http://www.lyricsmode.com/lyrics/m/moxy_fruvous/

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

Whoa

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

Oooh.

Oooh

Oooh

Oooh

(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)

fun.

Apologies, apologies. The audience of this blog never ceases to amaze me. Now that a) Charlie is doing spectacularly well and b) I don't have an hour every night by myself in the dark, it's difficult to make time to write on here. I shall make a better effort, though. Monthly, at least?

The Thomas household is fine. It's great. It's wonderful! We are having so much fun around here these days. The DCM looms over us constantly (Matt and I are crazy, basically) but it's easy to forget about it on a daily, minute-to-minute basis when Charlie is doing so well. We have our moments - moments that are not normal for average parents (Charlie didn't gain enough wait last month, a friend from the hospital has been listed for her transplant - these things make us crazier) but generally, life is pretty good.

I remember when Charlie was first diagnosed, Matt saying that all the 'stuff' (meds, syringes, tubes, etc) would just become our 'new normal'. I was skeptical, but it did. I can't imagine NOT prepping Charlie's meds for the next 24 hours every day around 3pm, or NOT knowing my way around Sick Kids. It's strange. We were visiting friends of ours with a 18-mont old baby girl, and I went to change her diaper. I was - startled it the only word that fits - when I lifted up her shirt and there was no g-tube on her tummy. It was the weirdest feeling. I said aloud to her 'oh, what a nice tummy you have!' While she looked at me like I was nuts. Because I am, a little, I think. :)

Charlie has a sedate echo in April 12th. We'll get more real information then, but if his energy level is anything to judge by, he is doing just fine, enlarged heart or not. Case in point:

I am so, so glad we chose to have me home and with Charlie for these 2.5 years. I'm headed back to work in the fall - part time - and the closer it inches, the more I realize what a special time this has been. Library time, swimming lessons, baby yoga...and dance par-tees.

That's the non-news from around here. Thanks, as always, for reading.

Carry on, by 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

Whoa

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

 

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Have yourself a merry little christmas...

Oops. Sorry. It's been 6 weeks since my last update and there is lots to tell. Christmas, g-tube update, and general Charlie ridiculousness. Let's go.

Christmas: amazing. When you are the only grandchild on BOTH sides, have doting parents who are still slightly sympathetic about your heart condition, and an aunt and uncle who both have unlimited budgets when it comes to babies...well, it's a pretty good christmas, isn't it? Charlie got spoiled rotten. I couldn't begin to list all of the presents he got. On top of that, Christmas Day was the best day I think we've ever had with Charlie - he was in such a good mood (who wouldn't be?), played all morning, had a good nap, ate well...it was lovely. Children really do make christmas so much fun again. I can't wait for next year and the year after, when things start getting really fun!

G-tube: our dietician (Louise) recommended we try Charlie on only clear fluids overnight (so, 700mls of PediaLite rather then formula) and see how he does, eating-wise. We just finished day two of what Matt and I are calling 'The Hunger Games' and its going better then I predicted, certainly. He's not miraculously eating 1000 calories a day or anything, but he is holding his own. Tomorrow we'll find out if/how much formula to reintroduce, and go from there. It's pretty cool, though, that we are working towards getting rid of the tube. Charlie is certainly hungrier and more willing to eat textured foods then before, which is nice. He also now has a bedtime snack!

General Charlie ridiculousness: he is talking up a storm these days. He loves to repeat anyone and anything, including family, friends, and random grocery store strangers. It's almost like having a very large parrot sometimes. And it's adorable. He's short, but I have a feeling we aren't going to be able to hold him back from much. Charlie is also developing his sense of humour quite a bit, slamming doors in people's faces and shouting 'bye!' at every opportunity. That's fun until you get a door in the face.

Other stuff: we had an appointment at SK in December, and it seemed generally hopeful. They've booked Charlie for a sedate echo in April, so that will give us more information about his hearts recovery, and they also took him off one of his medications (Lasix, the diuretic). It totally freaked us out that he was just 'done' with one if his meds, and I don't think Matt and I will react well if/when they take him off his heart medications.

Also, during that appointment Charlie was fitted with a Mic-Key button, which is supposed to be easier then the g-tube he has now. Unfortunately, it ended up being a terrible weekend of 'Mommy? Tube? Ow? Mommy?'. Annnnd then he tried to yank the new button out of his skin. Good times. So, back down to the hospital we went and the procedure was reversed. A very expensive, annoying mistake. :( But, Charlie is comfortable again and that's what's important.

That is the update from around here. Please keep Charlie in your thoughts, but even more so, one of our buddies named Wesley who is currently fighting brain cancer at our hospital. He needs your thoughts more the Charlie right now, and I'm sure Charlie is willing to lend his fans to Wesley to help him on his journey to good health.

Have Yourself A Merry Little Christmas

 

Have yourself a merry little Christmas,

Let your heart be light

From now on,

our troubles will be out of sight

 

Have yourself a merry little Christmas,

Make the Yule-tide gay,

From now on,

our troubles will be miles away.

Here we are as in olden days,

Happy golden days of yore.

Faithful friends who are dear to us

Gather near to us once more.

Through the years

We all will be together,

If the Fates allow

Hang a shining star upon the highest bough.

And have yourself A merry little Christmas now.

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