"What do you mean, normal?"

regular
[reg-yuh-ler]
adjective
1.usual; normal; customary: to put something in its regular place.

Last Friday, Elizabeth had her follow up echo at Sick Kids. I was concerned about how she'd do since they weren't sedating her and she is now a wiggly almost-four-month-old, but (of course), I needn't have been. It's become a running joke in our house how perfect a baby she is - she will actually tell you when she needs to sleep (growly sounds) or eat (whiny sounds). And other than that, she just quietly sits and obsess the world. She's amazing.

So, Sick Kids. We arrived, checked in, had her ECG done and headed into echo. It was fairly quick and she did well, laying there sucking her thumb and listening to me sing for most of it. Matt and I had a very interesting chat with the tech who was on exchange from Ethiopia. After, we waited over in good old 4A until Kristen came to get us.

Both Matt and I are pretty sure she tried to play it cool until we went into the room. I was super nervous and sat down, at which point Kristen says "So, her heart is normal." Matt and I just sat in stunned silence, to the point where Kristen says "Can I get a yahoo?". We were so bad at taking good news - bad news, we're experts. We immediately come up with questions and know what to say and do. Good news, we just sat there looking awkward and confused. I honestly said, "What do you mean, normal? Like, normal-normal?". Talk about PTSD.

But that's the news. Her heart, under the support of medication, is normal. Elizabeth will go back in 6 months for another echo and then perhaps go off the medication. Or not. Whatever.

It really made us think about Charlie and whether he would have done much better had he been diagnosed earlier. Surprisingly, that thought didn't make me bitter or angry...just food for thought. He was much sicker than Elizabeth from the get-go, though, so while he may have been better off than tube-in-the-nose, weeks-away-from-complications-including-death sick, I still think he would've been sicker.

Elizabeth and Charlie are joys and I'm glad we don't have to persevere through the mess we had with Charlie on the second time around. Thank goodness for Sick Kids and the great work they do.

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A Big Day

I've started to think about the whole medical side of charlies life as its own, separate journey. If that's the analogy, today was a major turning point in that road. Charlie had an appointment at Sick Kids and, although still not normal, our airs-on-the-side of caution cardiologist, Dr. D., says 'His echo's looking WAY better!'.

Whoa.

So, let's tell this story chronologically. We decided rather than spend the 2+ hours in the car to get down to the city, we'd take Charlie on the train and subway. WHAT a great decision. Charlie had a great time, we were able to relax, and we got to the hospital in just over an hour. It's funny that we finally figured out the public transit option on what was ended up being the day we were discharged to once-a-year hospital visits.

We got down to the hospital, had a tea and went up to our appointment. We had our weigh in and BP done first with one of our lovely nurse practitioners, Kristen, who was so happy to see Charlie. But, seemingly bad news abounded: I wasn't happy with charlies weight gain initially (+400gms in 6 months) AND Kristen told us we weren't going to be able to switch to twice-a-day meds because Charlie wasn't 4 yet. I almost cried, since that was the ONE thing we were really hoping for at this appointment. I'm sure the disappointment was written all over my face (I haven't trouble hiding how I'm feeling!) because Matt took over the conversation. We were sent to echo.

Charlie did really well at his echo. He doesn't like having his blood pressure taken, so those were the only times he got whiny. Other than that, he did really well. We put on a Toopy & Binoo and he just laid there and let the overly-sweet tech get her pictures.

We reported back to ECG and Faith, the tech who did charlies initial ECG when he was diagnosed, happened to be with us again. Charlie did well and we reported to 'Room 8' for results.

At this point, matt and I were feeling anxious but also defeated. As far as we knew, we were sticking with the 11pm bedtimes AND dispite months of seeming to eat better, charlies weight wasn't anything to write home about.

Then, Dr. Dipchand and Kristen entered with big smiles, Dr. D. says 'So, his echo looks WAY better, you can go to meds twice a day, and we're taking him off the Warfarin. You also don't need to come back for a year!'. Matt and I sat in stunned silence for about 5 seconds, as Dr. D. and Kristen sat staring expectantly at us, smiling. Both looking at us with that 'Well...? Isn't that great?' eyebrows up look. Matt and I eventually got over our shock, and held it together until they left the room. At which point Matt turned to me for a happy hug and I started to weep.

Sometimes, being pregnant and overly emotional sucks.

We saw our genetic counsellor next (everything is still fine with Booboo, the fetus) and our dietician, who told us our final good news - that Charlie's weight gain was just fine for his growth curve.

In the end, this was by far the best clinic day we've had at Sick Kids. It's funny that we were hopeful, then crushed, then elated. We ran the gamut of emotions and diagnosises in about an hour. And Charlie's doing great. :)

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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/

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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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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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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I need some sleep.

I know it's been a while since I posted. It's just that I've been so busy doing FUN things with Charlie (and some fun things for myself, too!). Life has improved dramatically of late.

So, the meat-and-potatoes first: the g-tube is working out well. I say 'well' and not 'beautifully' because it has yet to heal and that's frustrating, and there are always some growing pains with these kinds of things. It is much, much easier then the NG tube, though, and while we felt duped about the actual procedure itself (there were a lot of things no one told us), the real-life applications are incredible.

No longer do Charlie and I spend 4+ hours each and every day feeding through his tube. He now eats his formula overnight, and then just focuses on solids during the day. He is eating 1000+ calories on an average day, and 1100+ on a great one. We are calorie boosting everything with butter, but he is eating a good amount and our dietician is pleased with his progress so far. Once he was home, he really started to take off, eating and healing-wise. We've backtracked a little on the healing - the site has looked a bit gooey for the past few days - but it's looking better as of tonight and I'm hopeful for tomorrow.

Charlie started walking, and now is getting into everything. It is so. Much. Fun. And exhausting.

In other news: Charlie, my mum and I had a HUGE day today, and I am exhausted. Charlie is switching from one blood thinner (Enoxaparin) to another (Coumadin) so we had to go for a training/buying supplies/ informal nursing visit today. The only bad news is that the new drug makes his hurl if he takes it by mouth (it's super chalky). All of the good news: no more injections, one blood test every two weeks by the time we're level, it looks like our insurance company may cover the super expensive testing strips, and Charlie weighed in at 10kg.

Wait. What?

Do you like how I slipped that in there? Yes, after many months in the 9kg zone, Charlie is a porker at 22lbs or 10kg. Right on the button, too - 10.000. I was so pleased.

There's more but I'm too tired to write it. It boils down to I am enjoying Charlie's toddler phase and his new little personality, even if it is trying at times (my day: "Charlie, no. No. No. No. Mummy said no. No. No. NO! No. * sigh* No."). He is growing and changing and kissing everyone and enjoying life. It's wonderful. Goodnight.

I need some sleep - The Eels

I need some sleep
It can't go on like this
I tried counting sheep
But there's one I always miss
Everyone says I'm getting down too low
Everyone says you just gotta let it go
You just gotta let it go
You just gotta let it go
I need some sleep
Time to put the old horse down
I'm in too deep
And the wheels keep spinning 'round
Everyone says I'm getting' down too low
Everyone says you just gotta let it go
You just gotta let it go
You just gotta let it go
You just gotta let it go

 

Home.

We are finally, thankfully, restfully home. Our 48 - 72 hour recovery time turned into 6 days in the hospital - longer then our original stay when Charlie was diagnosed. He had setback after setback, albeit minor ones, and every day just dragged out to the eventual conclusion that meant another stay. It got very tedious by the end.

Tuesday was probably the easier, Charlie-wise. We got to the hospital early, as expected, and had a nice relaxing tea while we waited to be admitted. Then, we were taken to the step-down room in the cardiac ward, and from there it was vitals, transport, and by 11:00am we were in pre-op. we waited there for what seemed like FOREVER (they were having trouble locating the pediatric cardiac anesthesiologist, so we were happy to wait for him!). They finally look him around noon. Charlie had already fallen asleep on his own, so they just out the sedative through his NG tube and away he went. We got some lunch and went to wait.

It really seemed like no time at all before they were coming to get us to see him! We only apart for about an hour and a half, but I thought the time would drag. I guess we had good distractions (iPad, crazy people in the waiting area).

So, he was still asleep when we saw him (which was awesome; I had been having dreams of him waking up, and not seeing us (well, me, really) and freaking out). He woke up slowly and was fine, initially. We were taken back up to cardiac (4D) and he spent the rest of the day sleeping, kind of waking up and crying because he was thirsty. I started (without nurses permission, but whatever) giving him wet facecloths to suck on. It was pretty sad.

On Wednesday, things turn a turn. Charlie started getting a fever and turning red and flushed. By the afternoon, his fever leaked at 103.5F (with tylenol) and he was waking up from his many naps shaking and screaming. It was really scary. We had a lot of nurse and doctor visits, but ultimately we had to just let it run it's course. His fever broke over night and he was getting better by Thursday. He also pulled out his NG tube that day, negating any dreams I had of having a 'no more NG tube!' party.

Sick. :(

From there, the next four days pretty much went like this each day: wake up, eat, sleep, wake up, eat, barf, sleep, wake up, have slightly less, play, sleep, eat, sleep. Notice: no poops, and barfs - neither of which were good things. His little system took forever to gear up. But on Monday, finally, he started pooping normally without...ahem...'assistance'...and keeping down most of his feeds.

Awaiting the poop fairly.

There is occasionally a real lack of common sense in the medical profession. For example: Charlie used to throw up all the time, and only stopped when we started cruising during feeds. Makes sense, right? We're dumping in formula to his tummy, and after a certain amount, if he's not using it, he's losing it. When he started cruising, he started using it. Well, at the hospital, he was sitting for entire feeds (because where are you going to cruise around in your hospital room?) and not moving much between feeds, either. Also, he's had less in 4 days then he would have had in ONE at home, AND he went 72 hours without a thing in his tummy. OF COURSE he is going to throw up for a while while his tummy recovers its previous size, and while he heals and recovers from the surgery itself. Duh!

So, when the doctor who didn't know Charlie said that because he threw up, we may need to stay one...more...night...I literally laughed. I would have just left without being discharged! After explaining the situation to him, though, and getting him to talk to our team, he 'was willing to let us go'. Geeeee, thanks. :S

We were so lucky in the hospital to have good friends and family visit and (more importantly), bring FOOD! We were at the hospital for 6 days and we only bought ONE dinner. Amazing. Thank you to everyone who visited, or sent food, or even just Facebooked or emailed with words of encouragement. That made it much easier.

Ready to go with our new bravery beads!

So, we are home. Charlie is willingly wearing his backpack and being pumped while cruising, and I'm thrilled he's not complaining about it. :) I'm ready to start trying new schedules, but I don't think Charlie is. Hopefully, once we've been back on the old schedule for a week, we'll get going on something new, and easier. Library classes at 11am, here we come! :)

Home - Michael Buble

Another summer day

Has come and gone away
In Paris and Rome
But I wanna go home
Mmmmmmmm
May be surrounded by
A million people I
Still feel all alone
I just wanna go home
Oh, I miss you, you know
And I’ve been keeping all the letters that I wrote to you
Each one a line or two
“I’m fine baby, how are you?”
Well I would send them but I know that it’s just not enough
My words were cold and flat
And you deserve more than that
Another aeroplane
Another sunny place
I’m lucky, I know
But I wanna go home
Mmmm, I’ve got to go home
Let me go home
I’m just too far from where you are
I wanna come home
And I feel just like I’m living someone else’s life
It’s like I just stepped outside
When everything was going right
And I know just why you could not
Come along with me
'Cause this was not your dream
But you always believed in me
Another winter day has come
And gone away
In even Paris and Rome
And I wanna go home
Let me go home
And I’m surrounded by
A million people I
Still feel all alone
Oh, let me go home
Oh, I miss you, you know
Let me go home
I’ve had my run
Baby, I’m done
I gotta go home
Let me go home
It will all be all right
I’ll be home tonight
I’m coming back home

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.

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

 

The Rainbow Connection

Ug. Blogger made the switch. This is so much more difficult on the iPad now. *Update: bought Blogsy. Am a real blogger now. Much easier from iPad. :D*

Anyways...things have improved since the last post - most things, anyways. We'll begin with the negative...

My brothers surgery, although successful in relieving the pressure on his brain, did not produce the biopsy of the tumour they were hoping for. He spent a week in hospital before being discharged for the weekend, and checked back in last Monday. His neurosurgeon really wanted a sample of the tumour, so they scheduled James for another surgery this past week. The sample of the tumour was recovered, but because of the second surgery, the pressure on his brain increased again, and now they have to put in a shunt. You can read more about this procedure here, if you're interested. So, a third surgery is imminent and my poor brother is bored out of his tree, sitting in a too-small hospital bed for his 6' 4" frame (Mum and I are on that one, don't worry). We are all visiting as much as we can, but for the most part he is just laying, watching tv, staring at the ceiling, and waiting.

So that's the bad news. Not really bad news, as a shunt is a fairly permanent solution to his issue, and the biopsy results have not been returned yet. We are all waiting on pins and needles for those.

The good news:

1. Dad recovered from HIS surgery just fine.

2. Turns out my arm wasn't broken, just a severe sprain with some ligament damage. Because I had it in a sling for so long, it's healed a bit...short, so I can't extend my arm. It aches constantly, so I start physiotherapy this week.

3. Charlie got used to not having me pick him up, and all of the super-helpful guests we had through the house.

4. Charlie's doing great, walking, CRAWLING, and getting into everything.

5. We got a date for Charlie's g-tube. You can read more about g-tubes here, if you're so inclined. We make the Big Switch on May 29th. I still don't know if it's for the best, but it will hopefully be easier and hopefully not permanent. This makes May a very busy month, with meetings at Sick Kids, prepping us in different ways.

6. We are getting our basement finished. Hurray!

It's been an exhausting two weeks. It's not even over for my mum yet, who is driving down to see my brother almost every day. There is a small, growing light at the end of our Medical Week of Nightmares, though, and hopefully it's upon us by next week's entry.

The Rainbow Connection - Kermit the Frog

http://www.youtube.com/watch?v=jSFLZ-MzIhM&feature=youtube_gdata_player

 

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

Turn Me Loose

As of the beginning of this post, I have yet to choose a song for the end of the entry. I want to post song lyrics with each blog post because songs seems to really be speaking to me these days - I feel like each song I hear is directly related to something I have thought or said in the past day or so. Like, right now I am listening to 'Turn Me Loose' on the oldies station - which is how I feel sometimes. Turn me loose from all of these health issues and let Charlie be better! Turn me loose! It's also applicable because, for those of you who did not see Charlie in the hospital, 'I'm gonna get a thousand kicks or kiss a thousand chicks' is applicable, based on his flirting skills with the female nurses.

I received some blogging advice from a close friend: "Keep it short". So, todays entry will not the Biblical-length of yesterday's. Also, don't expect me to keep up with this blog-a-day stuff, either. At some point, I might run out of things to say. (Really? Maybe not.)

Today's entry: Charlie continues to grow, day by day. This week, we're hoping for 14lbs. He was at 13lbs, 13.5oz on Friday, and has been keeping the feeds down fairly well lately, so it's an attainable goal. We've been in the 13's for SO long...since the beginning of July! I am sick of the 13's. Big time. Plus, it turned out that some of those 13's for a while was just liquid and not 'true weight', which is what the lil' boy is now putting on. He's getting a little Budda belly and dimples in elbows and knees. Even his face, which has never been gaunt, is looking fatter. He kept his chubby cheeks through all of this, which is both remarkable and alleviating. Thank goodness for the NG tube.

Charlie has an echo on Friday. I'm trying not to get too hopeful about it...its not one where they have prepped us for news, and our NP has actually told us it's just a 'checkup', and that it probably won't yield much. 'Probably' is the word I get hung up on.

In other food-related news that is a bit more current, Charlie ate some of his rice cereal this morning and seemed to enjoy it. He was semi-opening his mouth and took it like a champ. We are so proud of him for the most minor things - I now understand how the parents of the kids in my classes have felt. I never understood it until now.

Turn Me Loose

Turn me loose, turn me loose I say
This is the first time I have felt this way
Gonna get a thousand kicks or kiss a thousand chicks
So turn me loose

Turn me loose, turn me loose I say
Gonna rock'n'roll long as the band's gonna play
Gonna holler, gonna shout, gonna knock myself right out
So turn me loose (turn me loose, ooh-ahh)

I've got some change in my pocket and I'm rarin' to go
Takin' some chick-a to the picture show
And when I see her home and we kiss goodnight
Well, turn me loose, turn me loose, turn me loose, turn me loose

Turn me loose, turn me loose I say
Yes, today is gonna, is gonna be the day
I want you all to understand, now I am a man
So turn me loose (turn me loose, ooh-ahh)

I've got some change in my pocket and I'm rarin' to go
Takin' some chick-a to the picture show
And when I see her home and we kiss goodnight
Well, turn me loose, turn me loose, turn me loose, turn me loose

Turn me loose, turn me loose I say
Yes, today is gonna, is gonna be the day
I want you all to understand, now I am a man
So turn me loose (turn me loose, ooh

Someone like you

Since I put in my first post yesterday, I have been anxious to post again. Writing is cathartic. I figure I'll start off with the various 'stories' that got us here. First off: the how-Charlie-came-to-be-diagnosed story.

Charlie was never a good nurser. For all of my breastfeeding, La Leche League Big Talk before he was born, I was actually releived to get the doctor's go-ahead to start supplementing with formula at 3 1/2 weeks. At that point, we thought Charlie's issues all stemmed from a lack of breast milk production on my part (in hindsight, how Grecian of us to automatically think it's an issue with the mother). I was put on a pill to increase my lactation (a pill that makes you fat and unable to lose weight, by the way!), and we were off to the races. However, Charlie's problems (not wanting to eat, being a bit of a screamer sometimes) didn't resolved. He never seemed truly satisfied. He continued to gain weight, though, and so although we were starting to think something else was wrong, it was deemed 'just the way he is'.

At his four month appointment, Charlie weighed in at 5 ounces less then a week prior. Sensing some cause for concern, our G.P. had us back in two weeks later for another weight in, which was exactly the same. For those of you who don't have kids, this is not normal. Babies want to eat, and babies gain weight hand over fist. Our G.P. then sent us to a pediatric walk-in clinic to have Charlie assessed.

At the walk-in we were paired with Dr. A. (our tough luck, as it turned out). He 'examined' Charlie - listened to his heart for a second or two, didn't undress him, and listened to our story about how Charlie was acting - and diagnosed him with GERD (Gastro Esophagal Reflux Disease). We were prescribed a pill that usually works for kids with this issue.

Obviously, the pill didn't work. We then got a liquid drug. Didn't work (we are now on week 3 with Dr. A.). Then, it was deemed a 'milk allergy' (even though Charlie has NO symptoms of such an allergy) and a hypoallergenic formula was given. Didn't work. ANOTHER brand of hypoallergenic formula was given. See where this is going? Nothing worked. And even though nothing worked, Dr. A. didn't refer us to another doctor until we asked, and told us NOT to go to the hospital because they would just 'turn us away'. Charlie's situation wasn't 'unique enough' for the hospital. And Charlie continuned to just maintain his weight - over the course of 2 months, he gained not one ounce.

Well, 6 in every million turned out to be exactly unique enough for the hospital.

So, one regular Tuesday evening, at the end of our metaphorical ropes, Charlie had a really bad evening. Coughing, shortness of breath, crying, inability lay down...the stuff of nightmares. He was actually so exhausted that he was falling asleep in my arms and waking up to cough. We decided that night that the next morning we would leave early to get to the Hospital for Sick Children and get Charlie looked at.

For those of you who don't know me, I am not one to take bullshit. In hindsight, my mother has said she can't believe it took us as long as it did to get Charlie to Sick Kids. And now, knowing what we know, I find it incredible, too, that we waited as long as we did. Alas, hindsight is 20/20.

Once we got to Sick Kids at 7am, all it took was the emergency department doing a chest x-ray (something we had suggested to Dr. A., but were denied because it would 'expose Charlie to too much radiation' (what?!), and we were literally whisked into the wonderful, comforting arms that is Sick Kids. Blood tests, an IV, an EKG, and an Echo were all given before noon. We were in our room by 3pm, given a tour of the ward, met our Nurse Practitioners (NP) and our cardiologist, and the wonderful nursing staff. We got our diagnosis, we found our what the first course of treatment would be, and our parents came down. We accessed the wifi and emailed/Facebooked all of our friends who, by this point, were worried sick.

Not unique enough, eh?

There were a lot of tears in those first days - shock, disbelief, mourning and uncertainty. For me, it was mostly the uncertainty of what lay ahead - something I still struggle with, albeit less so. I am such a planner! It's not really a gift, after all. We are OK for now though - good days and bad days, taking each day as it comes - and our families and friends have been the greatest support we can imagine.

Today's lyrics are Adele's 'Someone like you', because when Matt was on his way home from the hospital on Day 2 to get us clothes and toiletries, he heard this song and...it was an emotional moment for him. Just because it's sad and talks about losing someone - every time I heard it I think back to those dark first few days. It a romantic song, but some of the lyrics apply:

Someone like you - Adele

I heard that you're settled down
That you found a girl and you're married now
I heard that your dreams came true
Guess she gave you things I didn't give to you

Old friend, why are you so shy?
Ain't like you to hold back or hide from the light

I hate to turn up out of the blue, uninvited
But I couldn't stay away, I couldn't fight it
I had hoped you'd see my face and that you'd be reminded
That for me, it isn't over

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Sometimes it lasts in love, but sometimes it hurts instead

You know how the time flies
Only yesterday was the time of our lives
We were born and raised in a summer haze
Bound by the surprise of our glory days

I hate to turn up out of the blue, uninvited
But I couldn't stay away, I couldn't fight it
I had hoped you'd see my face and that you'd be reminded
That for me, it isn't over yet

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead, yeah

Nothing compares, no worries or cares
Regrets and mistakes, they're memories made
Who would have known how bittersweet this would taste?

Never mind, I'll find someone like you
I wish nothing but the best for you
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Sometimes it lasts in love, but sometimes it hurts instead