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 feel better. (maybe not Matt, though)

 

In the interest of multitasking, I decided to write a blog entry while on the elliptical today. I am using Dragon dictation which is my new favorite app. Or so please forgive any minor grammar or spelling issues it may make.

Charlie has been doing well as of late. Matt and I had a rough day last weekend when we ended up taking Charlie to the emergency ward because he his right side looked slightly distended. He wasn't eating any solid, and he wasn't his normal cheerful self. We call the cardiologist on call, and she thought it was a good idea to bring him in. Long story short after some blood work, his white cellcount was slightly high, leaving them to believe he did indeed have an ear infection. Afters some anti biotics, we are basically back to normal.

So now, Charlie is eating pretty well and getting into everything. He is walking everywhere, and is very busy boy. He is eating almost 1000 cal per day which, from my calculations is about 150 more than what he was eating prior to the G-tube.

We went to the splash pad yesterday with our friend Grayson. Both boys had a great time. Charlie didn't know what to do with himself going through a tube with water spraying in all directions. There are some very cute pictures of yesterday.

The other big news in our lives is that Matt broke his arm last week playing baseball. Honestly I don't know what else could go wrong this summer but I don't want to ask that question,lest it get answered. He may have to go to surgery today, and definitely will this week. He broke his elbow so badly that they have to put in a metal plate to help with the healing. Matt is being pretty pouty about the whole thing, mostly I think, because he can't hold Charlie.

Now, our planned vacation later in the summer is in jeopardy. Honestly, though, I am just glad Matt is okay, and Charlie is doing well. Really at this point, it's all we can ask for.

I feel better - Gotye

There was a time I was down, down

I didn't know what to do

I was just stumbling around, around

Thinking things could not improve

I couldn't look on the bright side

Of anything at all

That's when you gave me a call

Now I feel better, better, better than before

I feel better, better, better, now I'm not down any more

And there were times I was sure, so sure

I couldn't turn it around

I couldn't care any more

About the good things I found

That's when you gave me a reason

To make me smile again

I only have to see you and then

I feel better, better, better than before

I feel better, better, better, now I'm not down any more

I feel better, better, better than before

I feel better, better, better, now I'm not down any more

Life sometimes seems to get the best of you

Like everything just brings you down

Just when you think there's nothing you can do

A friendly face will bring you around

And you'll feel better

You'll feel better, you'll feel better,

Better than before

You'll feel better, much better

 

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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

 

Donate.

I know it's been a while. Suffice it to say that Charlie's g-tube makes us happier by the day, he is doing very well, and generally things are great. I went away this past weekend and saw some friends (sans Charlie) and am feeling recharged.

Cheating, I give you videos instead of writing:

Farm animals.

Giggles.

Walking.

Reasons to donate.

How to donate.

Enjoy.

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

 

Adventures

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

The updates:

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

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

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

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

We went from this:

To this:

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

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

The Adventure - Angels & Airwaves

I wanna have the same last dream again,


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

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

I don't know

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

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

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

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

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

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

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

I don't know - The Sheepdogs

Never have I heard

A more disturbing word

Holdin' out for long

I never felt so quite disturbed.

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

Waiting for the evening now, I don't know

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

Would somebody please, help me.

Lookin' back at me

There's more than mystery

Letters and pages of

Ancient history, yeah.

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

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

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

Would somebody please, help me.

I don't know, help me.

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

I don't know, help me.

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

I don't know, help me.

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