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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For Mrs. Trotter (special edition post)

Today my mum and I went to the One-of-a-kind show in toronto, where, like last year, I met with the wife of a former art teacher of mine. Mr. T. dealt with the WORST class in my elementary school's history (my class, although I was certainly not part of the problem...ahem) (seriously, one of the kids from that class went to jail. FEDERAL jail.). His lovely wife and fellow teacher, Roz, helped me barf on a class trip once. We go way back. Now Mr. T. sells his artwork at shows around Canada, one of which being the show we were at today.

We were discussing other family members and telling Roz about my brother and his recent health issues. Here is a pic of Jamie when he was wee:

As Joseph in the church pageant

 

And here is one of him recently:

In the back, at Charlie's baptism.

I hope Roz remembers, but if you don't, that's OK. You probably saw 10,000 kids during your time as a teacher. Plus, you remember me (who could forget all that barf?). :)

In April, Jamie was complaining of headaches, bad enough to stay home from work for. After some tests, it turned out he had a brain tumour and an operation was scheduled. During the month of April, he had 3 brain surgeries in 4 weeks. My dad had an operation during this time, too, and I fell and broke my arm. It was a rough month.

Dad is fine, my arm healed, and Jamie's brain (while still crazy ;)) is doing OK now too. He had a hematoma (now dissipated) and while the tumour will be in there forever, it's something he can live with through the corrective actions that the surgeries did. Thank goodness. We're very glad he is sticking around.

Last year I said '2011 tried to kill us - bring it on, 2012!'. This year, I say '2013 - please be kind. Please lead to all kinds of wonderful things for a family that has been through so much in so short a time. Thanks in advance.'

Let's hope for the best.

 

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The Alphabet Song

I promise I'll update more from now on. I've been getting complaints from people who I didn't even know read this blog (hi, Lynn!) so I will try to be better at keeping everyone updated.

Things are normal, which is amazing. I had a flu (which I am pretty sure I got from charlie - it seemed the same as whatever hell-fire illness he has in September) for Thanksgiving, and it was a sad dinner around here. Then, I got a cold which I am just getting over now, and I'm pretty sure Charlie is picking it up. And charlie's g-tube site had an infection which we are finally seeing the end of now.

The g-tube thing has been an interesting experience - Charlie's site started looking iffy a couple weeks ago. We just monitored it, but when it started looking really gross, we called the hospital and needed up taking him to Emergency (not our local emergency, because the docs there would have said, "WOW! A g-tube! Haven't seen one of those since medical school! So...what's the problem?") but the emergency department at Sick Kids, OUR hospital. As trips to the emergency ward go, it was a stellar experience, but it was still 4 hours of germs, late hours and waiting. We ended up on an antibiotic, but the spot kept getting worse. We ended up taking him BACK down this past Monday, after the 'spot' exploded (sorry if you just ate) and we were assured it would now go away on it's own with some TLC. Just one of the many gross things are having a tube.

Charlie has been lifting my shirt, looking for MY tube. And so begins the careful dance to make Charlie realize that no, not everyone has a tube, and while you need it now, you WON'T need to have yours forever - without making him feel shame about having one. When I ask him if he has a tube, he pulls up his shirt and points and says "Nooooo....". Oh boy.

All of that aside, though, it has been strikingly normal. Charlie is eating well (with the help of some somewhat distracting toys). He is gaining a lot of weight (yay!). Sick Kids is happy with how he is doing. He goes to daycare one half-day a week so that I can train in the pool for the triathlon. He went through the 'mamamama' phase - I could not be out of his SIGHT or he would lose his shit and start screaming 'MAMAMAMAMAMA!'. His dad was heartbroken - but this morning, Charlie woke up with a 'DADADADADADADA!' so I think we are over it now (hopefully. It was an annoying phase). So, even though we are ill, it's all been very, very normal.

The Alphabet!

 

I can't wait for Christmas, but I don't think that's news. ;)

The Alphabet Song

A, B, C, D, E, F, G, H, I, J, K, L, M, N, O, P, Q, R, S, T, U, V, W, X, Y, Z.

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Hot Fun in the Summertime

It's been a while, I know. Almost a month! I am....not sure how that happened. But, with the beginning of school so begins the beginning of my back-to-normal life, so hopefully there will be more posts.

Charlie had a rough July and a great August. I think he really enjoyed the latter half of the summer. He hung out with both sets of grandparents, swam, played with his friends and kissed his parents a lot (once he learned to kiss, it's been a real smoochfest at our house). In the DCM world, he was eating better, developing fine and all of his various health care professionals are pleased. *sigh* No more drama, indeed.

September has been great so far, too! Can you believe I am writing a post like this?! No wonder you haven't read anything new in a while - I was busy having FUN with my kid! Who woulda thunk it?

Charlie was sick for a week (leading up to his baptism, no less) but he has recovered well and is back on track now. No weight gain in a month, but when he was sick he didn't eat for 5 whole days so that's understandable. No need to worry. And he got 'upsized' to a new g-tube (size 12, for those in the know) which means we can transfer to a 'button' (lower profile and thus less of a pull-out concern for daycare) whenever we want. Exciting stuff.


Charlie got baptized. He looked adorable, as proven here:

Our little gentleman.

Charlie and I.

It was a lovely, lovely day.

Being a stay-at-home mom (to be referred to as SAHM from now on) is amazing. I feel like such an important part of Charlie's upbringing and I love that I'll be with him until he is well over two years old. I also feel good about going back to work - Matt's Department Head's wife (follow that) is going to be our daycare provider and I'm pretty sure she's the most amazing daycare person ever. The kids have agendas, do letter and number and colour work, and she is lovely. Oh, and they have dogs. Perfect!

In 'us' news - Matt has good classes this semester, which is great. He's enjoying teaching and although he misses Charlie, he's glad to be back. My big news is that I'm training for a triathlon next summer in support of our ward at Sick Kids. It's partially a fundraiser, partly a let's-lose-the-baby-weight mission. So far, I've lost 24.8lbs and the training itself is going well. I went for my first run this past weekend where I didn't have to stop! I treated myself to a 'Ta-ta Tamer' (Lululemon sports bra - hence the ridiculous name). I am - this is so weird - looking forward to running again.

That's the news from our neck of the woods. Hope all is well in your little corner. :) Smile all around.

It's getting cold up here...

Charlie's first ice cream cone!

Ready for Mummy's birthday!

 

Hot Fun in the Summertime - Sly & the Family Stone

End of the spring and here she comes back

Hi, hi, hi, hi there

Them summer days, those summer days

That's when I had most of my fun back

High, high, high, high there

Them summer days, those summer days

I 'Cloud nine' when I want to

Out of school, yeah

County fair in the country sun

And everything, it's true, ooh, yeah, yeah

Hot fun in the summertime

Hot fun in the summertime

Hot fun in the summertime

Hot fun in the summertime

First of the fall and then she goes back

Bye, bye, bye, bye there

Them summer days, those summer days

'Boop-boop-ba-boop-boop' when I want to

Out of school

County fair in the country sun

And everything, it's cool, ooh, yeah

Hot fun in the summertime

Hot fun in the summertime

Hot fun in the summertime

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Time

One year ago today, we received devastating news about Charlie. He had a huge heart, a huge liver, was retaining fluid, and things didn't look good. We were admitted and this secondary journey - the journey parallel to being a parent - began.

A year later, we are grateful to have Charlie in our lives, alive and well. His boundless energy and never-ending smiles, his tantrums and mood swings, naps and feeding schedules - its all a blessing and we cherish each and every moment. The other night, Charlie woke up at 4am and started to cry. I went in to rock him, and as I sat down, and turned to me with still-sleepy eyes and kissed me on the mouth. He then tucked his head into my shoulder and went back to sleep. He just wanted a kiss! And a year ago, while he was so sick,that kind of magical moment seemed out of reach and improbable at best.

He has a huge heart, and a good heart. He goes for echos and ECGs and Holters and has lots of nurses who would like to adopt him and/or be his girlfriend. Charlie is remarkable, adorable, frustrating, trying, intelligent and emotional. He is everything we wanted and more. I can't imagine a more different place from a year ago today. I am thankful for the support of good friends and family. And we look forward to continuing to share each moment with our special little boy.

 

Time - Pink Floyd

Ticking away the moments that make up a dull day

You fritter and waste the hours in an off-hand way

Kicking around on a piece of ground in your home town

Waiting for someone or something to show you the way

Tired of lying in the sunshine staying home to watch the rain

You are young and life is long and there is time to kill today

And then the one day you find ten years have got behind you

No one told you when to run, you missed the starting gun

And you run and you run to catch up with the sun, but it's sinking

And racing around to come up behind you again

The sun is the same in the relative way, but you're older

And shorter of breath and one day closer to death

Every year is getting shorter, never seem to find the time

Plans that either come to naught or half a page of scribbled lines

Hanging on in quiet desparation is the English way

The time is gone the song is over, thought I'd something more to say

Home, home again

I like to be here when I can

When I come home cold and tired

It's good to warm my bones beside the fire

Far away, across the field, tolling on the iron bell

Calls the faithful to their knees

And hear the softly spoken magic spell

 

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No more drama.

The last few weeks have been tough. Charlie hasn't really been 'well' since we left the hospital post-g-tube - he always seems to have a fever or be lethargic or vomiting. We have made a few trips to emergency departments - once down to Sick Kids because we thought his side look distended (a sure sign of fluid retention) and once because of his 39.9C fever. Then, early Tuesday morning, things to a turn for a worst.

I heard him around 2:45 quietly whining to himself. This is SO unlike him - he's usually asleep or screaming for me to come in and snuggle. He is not generally whiny. But there he was, on the monitor, whining away. Quietly. To himself. I thought perhaps he had rolled on his g-tube, so I quietly went in, only to be greeted by a pair of wet eyes and outstretched arms. I picked him up and as I did so...saw vomit. Everywhere. With blood in it.

Yes, blood.

I put Charlie down, went and got Matt (who was sleeping with the fan on and wouldn't have been able to hear me had I called) and by the time I got back, Charlie was vomiting MORE (how the child even had any more in his tummy is beyond me, and the realm of science) and panicking in his crib. I held him as he threw up and then went into uber-mom mode. I detached him from his pump, carried him to our room, ran a warn bath and got in the bath with him. By this point, Charlie was so entertained by the fact Mummy and he were getting in the bath in our CLOTHES he forgot about being upset.

Matt called the cardiologist on-call, who eventually directed us down to Sick Kids. I say 'eventually' because he was just a fellow (cardiologist in training) and he had to call the real cardiologist to consult before he could tell us to come. By the time he called us back, we were packed for an overnight and at the door, waiting. We would have been going whether or not he called back.

I set the cruise at 120 km/h and we sailed down to Toronto. There isn't a lot of traffic at 4am. It's lovely.

From there, things were pretty efficient, although I had to get all Mama Bear on the emergency nurses. They were trying to put in an IV into Charlie's very dehydrated, 'flat' veins and couldn't get it in. The poor kid would cry every time they poked him, and then fall asleep between attempts. After two tries, I asked WHY they were putting in an IV. They told me it was 'just in case' he needed fluids later. So, I told them he wouldn't be getting an IV unless he actually needed one, and they could just find someone who KNEW WHAT THEY WERE DOING for the blood draw.

Charlie didn't get an IV, and they found the Vampire Nurse who got blood from his arm, no problem. :S

We ended up spending the night there (so, from 5am Tuesday to noon on Wednesday) but all of Charlie's cultures came back negative. It's been deemed a 'virus' (thanks, specific doctors!) and we're just to ride it out. We also got some of his g-tube healing issues worked out while there, and we also met the new cardiologist follow from Singapore who is LOVELY, and took the time to explain to us how Charlie's Ejection Fraction is measured. We really appreciated his candor and kindness, and the fact he didn't assume we were stupid.

We also found out while there that Charlie's BNP (a hormone variant that informs heart failure) is now in the NORMAL levels. Amazing. It's 72, which is great for someone who has been in heart failure before. When we were admitted last August it was 1100. :(

So, that's the news. I am ready for some major regular-ness. Eating, normal days, healing arms and elbows, and no more drama. Please.

No More Drama - Mary J. Blige

So tired

Tired of all this drama

You go your way

I go my way (no more no more no more)

I wanna be free

(singin)

Broken heart again

Another lesson learned

You better know your friends

Or else you will get burned

Gotta count on me

Cuz i can garuntee that i'll be fine

No more

No more pain (no more pain)

No more pain (no more pain)

No drama, no more in my life (no more drama in my life no ones gonna make me hurt again)

Why'd i play the fool

Go through ups n downs

Knowing all the time

You wouldn't be around

Or maybe i liked the stress

Cuz i was young n restless

But that was long ago

I don't wanna cry no more

No more pain (no more pain x2 )

No more game (no more games messin with my mind)

No drama (no more drama in my life no ones gonna make me hurt again, no more~)

No more tears (no more tears i'm tired of cryin every nite)

No more fears (no more fears i really don't wanna cry)

No drama (no more drama in my life i don't ever wanna hurt again)

Wanna speak ma mind wanna speak ma mind

Uhhhh it feels so good

When you let go

Of all the drama in your life

Now you're free from all the pain

Free from all the games

Free from all the stress

So find your happiness

I don't know

Only god knows where the story ends for me

But i know where the story begins

Its up to us to choose

Whether we win or lose

And i choose to win

Ohhhh...

No more pain (no more~, tired)

No more game (no more games i'm tired, i'm so tired)

No drama (no more x7)

Background Singers : (No More Drama) x4

MJB:NO More

I'm tired of all this drama

Go 'head go 'head

U demons getting out of my face

Go get out of my life

I'm about to lose my mind

NO.....

Help me help me sing

Choir : (NO MORE DRAMA) x6

MJB: No More Drama

No more, no more, uhh. Yeah~

No more, no more drama

Ohh help me sing

I need a (peace of mind x3)

Yeah i need

Hide but nicely i need to know that u r free

Oh nox2

No morex2

No more dramax2

In my in my... life.

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