Saturday, June 23, 2012


Gabrielle - I will never underestimate what you are capable of.  In fact, I make sure to never, ever put any limits on what you will or will not achieve in your life.

Today, you did something amazing.

After meeting with the Respirologist at Children's on Friday he suggested playing around with your oxygen levels by taking off your prongs for short periods during the day.

Today you went without any O2 for two and a half hours.

What a wonderful sense of freedom we experienced together today!

Now you sleep deeply with your oxygen at only 1/8th and you're saturating at 98%.

You are one. amazing. girl.  I can't wait for tomorrow to take those prongs off again and let you breath in that fresh, ocean air.

Sweet dreams baby girl.

Wednesday, June 13, 2012

20 month snapshot

My sweet Gabrielle!  You are getting so big and changing so much these past few months.  It's like you've had a huge development explosion and are starting to demand new experiences and opportunities to learn and grow.  You are just itching to move around and my heart aches for you as I know you really want to jump up and go and explore.

What I love most is that even though you can't move, you signal to us by moving your body in the directions that you want to move.  I am so happy we found a walker that you can move around in.  You only go backwards at the moment but your face lights up as you move from room to room.  I will never forget the first day we put you in it and every time you moved your dad, and your two brothers and I hooted and hollered and clapped for you.  You were all smiles and the four of us were so proud and happy for you.

You are so smart.  You are so social and I love how you light up when people come and talk to you.  You love all the attention and you have so much to say.

We put you in your stander for the first time the other day and once we figured out how to make it comfortable for you, you loved the viewpoint it provided.  You stood tall and played with your books and puzzles while the rest of us laughed and clapped for you.  You loved being a big girl standing beside your brothers.  You were beaming Gabrielle.

Happy 20 month milestone beautiful girl.  We love you and are so proud of you.

Thursday, June 7, 2012

June 2012 Update

When we start getting multiple "How are things going?" and "How is Gabrielle doing? We haven't heard for a long time," ... we know that's our cue to update the blog.

Easy for you. Easy for us.

Here's the gist:

Diaphragmatic Hernia
We've learned that Gabrielle has a diaphragmatic hernia. The surgeon thinks – at this point – it is largely benign. In speaking with the surgeon today at BCCH Gabrielle's hernia is wrapped in a membrane allowing it to stay somewhat contained in the chest cavity.  The risk of it getting worse and having the bowel twist and strangle itself is unknown.  They believe that it is not affecting her pulmonary function at this point in time and we have decided that we don't want to put her through any risky procedures.  Amy asked the I-Cell Support Group whether or not they had to go through this with their kids, and several said they had. The ones who choose pre-emptive surgery (to prevent badness later on) found that their kids' need for oxygen significantly decreased, if not ceased entirely. So, while benign for now, if we see that it becomes more of a problem giving her pain, and compromising her lung capacity we may have no choice but to go ahead with the surgery, only time will tell.

Line Removal
We are meeting with the oncologists at BC Children's to discuss the possibility of removing Gabrielle's central line. This is the super-tube that is inserted for chemotherapy and all the meds involved during and after transplant. It starts on her right chest, runs underneath her skin and into her superior vena cava leading into her heart, and it's allowed Gabrielle to avoid needles and bruising from IV for over a year now. We can't bathe her without wrapping her chest in glad wrap, and even then it's a cloth-based shallow bath. So the prospect of removing her line is also very exciting especially for the summer.  Because of her oxygen requirements and her possible need for tubes, her line will need to be taken out in the OR with an anesthetist in case things go wrong.  Usually children have their lines removed in the clinic and is surprisingly quite a simple procedure.

We've also learned that our little girl is partially deaf and would greatly benefit from tubes. She can hear loud, low, strong sounds, but not higher / whispery sounds. Luckily the procedure is very quick and only requires sedation.  In talking with some I-Cell parent friends, the added sense of sound that comes with tubes is hugely beneficial for development and social interaction, and well worth doing.

Risk of Intubation
The catch, however, is that the first two procedures require intubation, ventilation and anesthetic (with tubes requiring sedation), and the harsh reality is that fatality is a serious concern when I-Cell kids are intubated due to their small airways and weak muscle tone(again, a big thanks to the community for this information).

So .... (big sigh) ... yeah. Our number one priority for Gabrielle has always been quality of life, and I'm 80% sure we've decided to go for the line removal and the ear tubes, but the invasiveness of the hernia procedure is something we're leaning against.

Some unexpected good news is that Gabrielle pulled out her ng-tube last week (i.e. yellow feeding tube she's had for months and months now) and has been thriving without it since. This was something she would regularly yank out (since January) with her quick hands, and we would have to get a nurse to re-thread it down her nose, throat, and into her stomach, always ph-testing it to make sure it was placed right so the feeds landed in the right place. Imagine having a tube threaded down your nose that way. Oh Gabrielle. So we are super happy she's shown us she doesn't need ... kind of intentionally too.

The Family
We're hanging in there. Michael and James are just awesome, are developing incredible gentleness and senses of empathy, and keep us smiling, laughing, and moving so much that we haven't been able to go anywhere too dark. Our new au pair Kaitlyn has arrived from Nova Scotia – she's wonderful, a huge help, and has allowed us to catch our breath. In fact, I think we're only just coming to realize how traumatic the past year and a half has really been – a string of exhausting crisis situations that have, at times, put us on the brink ... testing and affecting us in ways we never thought possible, in good ways and bad ways. Actually, it's amazing what large doses of stress, exhaustion, grief, and joy can do to your psyche.

Maybe Freud was right about those defence mechanisms ... denial and regression come to mind for me (LOL), and I know better than to speak for Amy.

But we're doing alright. It feels like we're heading in the right direction. It's amazing how resilient we all are. We got a little hero who shows us every day what living through adversity really means, and how to do it with a smile.

Saturday, June 2, 2012

From the Mouth of Gabriel

I stumbled upon this song tonight. I don't know how I missed it until now.
Sufjan Stevens is one of my favourite artists.

It made me think and feel a million things.
Like how how I've been a big mess lately.
Like how the instant Gabrielle was born, I knew she was a Gabrielle.
She was going to be a Madelyn or a Brianna, until I saw her.
"God is my strength" her name means. We named her within a minute.

It's weird how children are the best teachers.
They're so real and so good.
So much so that sometimes we try and run away from what they're trying to teach us,
As if there's so much of their "good" wanting inside us that we can't bear it.
Until we get so exhausted from racing and running that we fall flat.
And remember that we're real and good too.
And can make things right.

Sufjan Stevens - From the Mouth of Gabriel


Desperate measures lead to death
From the mouth of Gabriel
Who died in his sleep when the world was a very big mess
A very big mess; he saw too much
From now on I will look away from every accident
That may or may not come my way

Saw you were talking up above the Aleph room
Masquerading as a loom

Both of us saw things
No one else would see as well
From the mouth of Gabriel
No one else would hear as well
From the mouth of Gabriel, etc.

Don't be so sure of what you feel (it might as well be trouble)
From now on just let the universe be your shelter from the enemy

Your face has changed
I hardly know who you are this time
And what a mess I've made of you
You probably would but I won't let you run away
You probably should but I won't let you run away this time

Don't be afraid of loneliness some refugee beside itself
Instead of what you've got
You probably would but I won't let you go away
You probably should but I won't let you go away this time

Your face has changed
I hardly know who you are this time
And when I came into your room
You tried to jump

Now I know this is strange to hear from the mouth of God
It was something like a scene from mars
In a struggle between loves and lies
The ange kept his face covered for to keep his word
And while I spoke something left from my life
Forget about the past
Be at rest I'll make things right
And while I held you at best you nearly died
Forget about the past
And I'll try to make things right.