Captured on camera

Showing my dutch side:

Some of the best parts of being Dutch: Wilhelmina peppermints, Edam cheese,
and Hagelslag, chocolate sprinkles made especially for breakfast!

Showing my table manners:

Showing my fashion sense:

(we call this his 1980's aerobic instructor look)

And now I must go

(I am a very busy guy and there are many things I must do)

drew

Ode to the apartment we are leaving

Goodbye quirky old apartment
with your dusty-rose bathroom fixtures,
your warped parquet hardwood floors
(sloped perfectly for a baby and a very round ball placed just so),
and your must-have-been-for-milk-delivery cabinet outside the door.

I will miss you, sweet old apartment, for all the memories you hold.
Our first (and so far only) on-our-own Christmas.
So many summer nights sipping wine on the deck.
Cheering for the Canucks
with the rest of the neighbourhood
behind their equally thin walls.
Picnic dinner on the front lawn every night
during the hottest days of summer.
Those (thankfully few) sub-zero days
when the butter in cupboard
was as hard as the butter in the fridge.
Thirty hours of labour in the comfort of home
before it was clear
that what I'd planned was not to be.
Coming home too many nights without our baby,
until that oh-so-sweet day
when we three came home together.

I will not miss
your lousy, leaky, I-can't-believe-we-lived-with-it-so-long plumbing,
your moldy, mildewy, window sills,
your (probably lead-based) chipping paint,
and your paper-thin single-paned windows.

Goodbye dear apartment.
You have been just the right place at just the right time.
You have been home.

And I have been very very happy here.

I am glad we are not going far.
And I am looking forward to being able to operate
the coffee maker and the microwave simultaneously.


kb

If you were this cute...

...you might want to give yourself a kiss too.

kb

Toys?

Drew loves to play with anything he can get his chubby little hands on. Typical nine month old in that regard (yes, nine months - we've managed to keep him alive that long). However, while toys are good, they're no match for non-toy play things. Top of that list is medical paraphernalia. Top of that list is oxygen tubing and ventilator hoses, of which we offer the following example.

Dear Drew,

That is all very true, and very sweet.
It would be equally (if not more) sweet if you would sleep for more than a 2 hour stretch.

Just sayin...

Love,
Mama

Dear Mama,

I'm sorry that I woke up all night long last night. And the night before. And the night before that.

I miss you when you are at work all day, and it seems a shame that we spend so much of our time together sleeping. So I decided I wouldn't. Why should I drink milk during the day from a bottle when I can get it straight from the source at night? Plus, I have to make up for those first two months when we spent our nights apart.

You know you really do like looking at my sweet sleepy face at 3am.

Remember, Mama, this stage won't last forever. It won't even last very long in the grand scheme of things. There will come a time when you will wake up on your own and look over to see me sleeping and you will miss these days.

Until then, this is the reason they invented the double Americano.

Love,
Drew
(who is still napping at noon to make up for the sleep he missed at night)

Where have we been?

Not getting a g-tube!

Thanks all of you for your thoughts and prayers and sorry for the delay in updates.

After a week in the hospital we were released for the weekend with the plan to return the following week for g-tube surgery scheduled for Wednesday. We were both pretty sad about it but we had finally come to terms with the g-tube being the best of the options available right now. But, on Monday, David decided to try giving Drew his nasty med mixed into a bowl of sweetened yogurt, in one last ditch effort to get him to take it orally... and the kid gobbled the stuff up, opening his mouth for more. So despite the skepticism of our medical team (okay, mommy was pretty skeptical too) the g-tube evader was let off the hook again, while we give the oral route a try. It has now been 9 days of Drew taking his full dose of meds in a bowl of yogurt.
His breath holding has somewhat improved, he still has episodes once a day, but they are much shorter in duration and we continue to pray and hope that each one will be the last.

And what have the three of us been doing when we're not getting a g-tube?

Carving pumpkins, staying up late, eating yogurt, visiting with Grandma and Grandpa, drinking tea, walking the seawall, baking bread, eating muffins, welcoming a new cousin into the world, harvesting neglected green beans, wearing preppy sweater vests, enjoying pumpkin spice lattes, reading new books, planting tulip bulbs, ordering takeout, reading emails, touring the city gardens, napping in the carrier, looking for bigger apartments, catching fall leaves, shopping at Granville island, dressing up like a mouse, loading the stroller full of groceries, savoring pumpkin beer, waking up all night long, Christmas shopping online, trick or treating for the first time, wearing double hoodies when we go out, trying so hard to crawl, posing for pictures, and eating skittles, to start.






**We had tried mixing it with food before, but that was back when Drew only ate one or two spoonfuls at a time, and at that concentration the stuff was so nasty it would turn him off of eating solids entirely. Now that he reliably eats a small bowl full, I guess the concentration is dilute enough that he finds it acceptable. Nevermind that sickly sweet yogurt is pretty much the only solid he eats.

*** the great pictures in this post are mostly taken by Grandma

8

Today was Drew's eight month birthday. We decided to celebrate by going to the hospital. Nothing says party like the ICU...

Thank you for your prayers. After having an episode on Saturday we phoned our Doctor on Monday morning to discuss further treatment possibilities. We were still struggling with making a decision to proceed. Drew was doing so good we thought this might be it for his breath-holding spells. We prayed very specifically for clarity and guidance on Monday afternoon after which Drew proceeded to have two episodes in two hours. For us that was all the clarity we needed. So here we are today.

Despite the fact that Drew continues to have episodes we are thankful for answered prayers, even if they are of the non ideal variety. Monday afternoon I found great comfort from Psalm 102, a prayer of one afflicted, and psalm 105, which is a reminder of some of God's many works. We are at peace with our decision and feel very confident that this is the right thing to do.

Please continue to pray for Drew. He has some tests tomorrow then we'll wait to have a g-tube implanted in his stomach (that will probably happen next week - hopefully we'll get to go home for the weekend). The g-tube will ensure a reliable delivery of Drew's medication that we hope will work. No one knows if it will but at this point it's the least invasive best option.

We'll keep you posted...

"Hear my prayer, O Lord; let my cry come to you! Do not hide your face from me in the day of my distress! Incline your ear to me; answer me speedily in the day when I call!"

"Seek the Lord and his strength; seek his presence continually! Remember the wondrous works that he has done, his miracles, and the judgments he uttered."

db

Oops I did it again

Sorry about the lame title - It was Karla's idea

After 70 hours without incident, Drew had an episode this afternoon. While this is devastating for us we are thankful that this was one of, if not the longest, stretches we have ever experienced without any episodes. An answer to prayer if you ask me. Drew is fine (right now while he is supposed to be going to bed he is grinning like a fool on his Mommy's lap) and we are fine.

Please continue to pray for complete healing. We still hope that he will never have an episode again. We will talk to our medical team on Monday to discuss next steps. Please pray that we will make the right decisions.

Thank you for praying!

db

Still episode free...

Here is a video of Drew in his new chair. It's from Germany and it's very efficient. Drew loves sitting in it at the table. Thanks Uncle Norm and Aunty Suzy!

Waiting for a miracle

It has now been 52 hours since Drew last held his breath; he has gone this long without breath holding only a couple of times since he was born.

So. What do we do while we're waiting for a miracle?

We are doing are best not to hold our breath waiting for his next breath hold, and instead trying to get the most out of all the small but wonderful bits that make up daily life with a 7 month old:

• We let him feed himself his dinner even though he gets more pureed chicken and pumpkin in his ears and nose than in his mouth, and he gets broccoli bits, well, everywhere (have you every tried to clean broccoli bits off of everywhere?!)
• I hold him a little longer after I've rocked him to sleep before oh-so-gently lying him down in his crib.
• We let him get a little rowdier during his bath in the kitchen sink even though it sends tidal waves onto the kitchen floor (it needed to be washed anyways)
• I have a little (but just a little) bit more patience for 6:30am play time.
• I take an impromptu day off of work and let those genes take care of themselves for a day.
• We go for a walk to watch the sunset when we should be home making dinner (thank-you, Laura, for keeping us fed)
• We put most people who call us on the line with Drew for a few minutes (the kid is absolutely crazy about the phone)
• We take a detour through the park on our walk to the grocery store so we can catch a black squirrel sighting
• I hug that kid a just little bit tighter when I get home

Yes, there are moments when I am absolutely paralyzed with fear about what will happen to Drew in the next minute, or week, or year. But for now we are packing the most living and loving into every single minute that we have. We don't know what the future holds but the present sure is great.

praying hard and playing hard.

kb
(my goodness, that was sappy, I must be sleep deprived)

Prayer

Below is an email that Karla sent last night. I'm copying it to the blog because we want you to pray for us. This is the main reason we started this blog. So that we could report on how we are doing so that you might pray with and for us. We are praying for a healing miracle for Drew. We believe with our whole beings that a healing miracle is possible because we believe in a God of miracles. We also believe that miracles and answers to prayer happen in ways that we may not understand (means and consequences) but that we are to put all of our trust, hope and faith in God.

Thank you for your prayers.

Hi everyone,

I know many of you are still praying for Drew on a regular basis, but we have some very specific requests today so I thought I'd send an email.

Basically, well, we need a miracle. Drew still often holds his breath when he cries. While we call it breath holding our Doctors always remind us that this is not the benign breath holding seen in toddlers throwing temper tantrums, instead they consider each event to be life threatening and are concerned about unknown neurological consequences adding up over months with multiple episodes of short term lack of oxygen to the brain. So something has to be done, but no one really knows what. One possibility is to give Drew a g-tube, so he can reliably be given a medication that may or may not work to decrease his episodes. We've been trying to give him this med for the last 3 months with little success as it tastes absolutely horrible and giving him his twice daily dose often causes him to hold his breath (we've tried every trick in the book). A g-tube would be a no brainer if we knew for sure that the med worked (it's an off-label use of a drug not available in canada but sold elsewhere over the counter as a cognitive enhancer, among other things...Its called Piracetam if anyone's interested), but we still can't tell if it is having a positive effect on Drew. It seems extreme to make a baby go through (albeit minor) surgery for something that may or may not work, but the only other choice is to take a risk and wait and see if things get better. But we've been doing that for a while and the risk seems to be getting bigger as his episodes are getting more extreme.

We don't know how to make this choice, so we're praying for a miracle: that Drew would never hold his breath again. We've decided that if he holds his breath one more time we will head to the hospital and discuss g-tube options. To put this into context, he typically holds his breath 5-10 times a week. Praying for no more breath holding episodes may seem like a big request but I believe God is big enough.
This is why: Many of you know that David used to have frequent (multiple times a week) and debilitating migraine headaches. He had these for years and nothing any Doctor suggested worked. Nothing I could do helped. No triggers were identifiable, no lifestyle modifications had any influence. There was simply no way we could help ourselves. We prayed and prayed, and then one night a few years ago David came home from a prayer meeting and told me he felt he had been healed, and that the burden of recurrent migraines had been lifted. And I thought, yeah right. Since that night David has had maybe 2 migraine headaches. So I know that God can do this sort of miracle. And I kind of feel like I'm in that same place. There is nothing that I can do to stop Drew's breath holding, but it is in precisely this place that God can work.

So please pray for this miracle, and also pray that we will have peace in the decisions we make and that we will see God's hand working no matter the outcome.


(in other news, the Drewster has two wee teeth and is trying so hard to crawl!)


Love,
K&D&d

The sun goes down on summer

On this dark and stormy saturday I'm sipping a Dark and Stormy and reminiscing about last week Saturday when summer gave us one last hurrah.

Savouring the last SunGod of the season at The Galley


Beachside stroll

Family picture attempts:

Mommy doesn't like this:

But these guys sure do:

One last ride in the infant carseat (with a vintage Drew for comparison):

We've come a long way.

kb

How to get more time with mama

Two tried and tested methods to get your mama to spend less time at work and more time with you:

Method 1: Get your family sick.
My strategy for finding a germ is to try to put everything within your reach into your mouth, if your mama tries to stop you, touching everything you can get your hands on and then sucking on your fists is also effective. If your mama is stubborn you may have to pass the germs to your daddy and get him sick too. Like me, you may have to resort to extreme measures like also passing the germs to your mama so she absolutely cannot go to work.
Extra time with Mama: 2 workdays
Caveat: Mama will be sick. If you don't jump around too much she'll probably still cuddle you all day long.

Method 2: Hold your breath.
If you hold your breath often like I do, you may have to step things up a bit to get the required effect. I had to refuse to take my medication and start breath holding more frequently for an entire week. Middle of the night breath-holds are the best and if you hold your breath to the point of passing out and slowing your heart rate you can really get their attention. If your mama is like mine she will mention this to the doctors and they will not like it one single bit. Then you will get to stay in the hospital again and your mama will stay with you!
Extra time with Mama: 2.5 workdays
Caveat: You will be in the hospital. On the plus side, while you're there you can restock your soothie stash.

And now its the weekend and mama's not going to work anyway.

What should I plan for next week?

drew

First Hike

Yesterday we took Drew on the Deep Cove lookout trail for his first hike.


Daddy carried:

• Drew

Mommy carried:

• suction machine
• saline for suctioning
  
• 2 spare trach tubes
• emergency trach ties
• scissors and tweezers
• emergency resuscitation bag
• 8 suction catheters
• 2 manual suction catheters (should the suction machine fail)
• 2 heat moisture exchangers
• 2 saline bullets for suctioning
• 3 diapers
  

And the ventilator? we left that sucker at home.

kb

Jumping revisited

For Aunty Lela (and others who may be wondering)

We do read your comments we're just both really lazy with replies :)

Yes, Drew will be able to use his voice some day.
His vocal chords are fully intact and functional if he gets air across them. Once a month we take him to the hospital and the plastic tube in his trachea is replaced with a new one, if we are lucky we get to hear a squawk or wail during the 3 to 5 second interval where the tube is out.
We should be able to hear him eventually even with the trach tube in. Right now, since he is so small the plastic trach tube takes up most of the space in his trachea so very little air can flow up and around it. As he grows bigger his trachea will get larger and some air will be able to leak up and around the trach tube and past his vocal chords when he exhales. There are also different one-way valves that can be attached to the trach tube to facilitate this (so he inhales through his trach tube and exhales through his mouth). As crazy as it may seem, we really look forward to the day when we can hear our baby cry!

No, there is no further insight into his diagnosis.
Basically the Drs are stumped by our little mystery boy. He has a "central hypoventilation like" type of "dysautonomia" which means his autonomic nervous system is not functioning properly so he's not so great at brain functions that you normally don't have to think about (like breathing). Although it would be nice to have a diagnosis so we could know what to expect in the future, it's not like having a name for his condition would change his treatment anyways. For now he will continue to be closely followed by a number of specialists, who so far are very encouraged by how quickly he has improved.

David very rarely has migraine headaches anymore but continues to have good and not so good days in terms of his overall health. Luckily he does feel good enough that he should be able to take care of Drew full time starting in September when I go back to work. It would be great if people could pray for this as we're both a little apprehensive about it.

And for Aunty Jo:
Thanks for the signing website, we'll add it to our collection of signing bookmarks. We have been doing quite a bit of signing with Drew so far and it always helps to have more resources to find the obscure signs for things like mail (Drew and daddy go down to the lobby to check the mail every morning) and monkey (we frequently do the "little monkeys jumping on the bed" rhyme) that aren't in our signing books.


kb

A walk at the beach

"wave to mommy!"

Family Self-portrait Fail:

uh. missed the little guy

"I don't think he's happy"***

After we walked that off and tried again in a new spot:

don't you love the scenic Vancouver skyline?

no scenery and no smile.
shortly after we realized he badly needed a diaper change. oops. parenting fail.

kb

***because Drew's tracheostomy causes him to inhale and exhale below his vocal cords, he does not pass air over his voice box and is therefore totally silent (he's a convenient apartment model baby who never bothers the neighbours). this presents a number of challenges, one of them being that unless we can see his face it is difficult to know if he is upset (as you can tell it is immediately evident when you look at him).

Mr. Bright-Eyes

Falling over happy

Googly and Giddy

Hey everybody!

Last week Uncle Giddy was nice enough to take a bunch of great pictures of me. Uncle Giddy sure is great. Not only does he take really good pictures, he also makes great beer with Daddy, makes cool videos, builds nice things and he and Auntie Kveta took care of my parents while I was at the hospital. Do you know that his name is Aaron? That's my middle name! He is also the Daddy of my buddy Owen. All around he's great guy and I love him lots.

The best part of picture time was that I got to play with my favourite toy: Mr. Googly-Eyes!

I love Mr. Googly-Eyes. My parents make sure he is always with me wherever we go.

Sometimes I get a bit concerned if I can't reach him.

But Daddy will make sure that he is always close by.

I'll even share him with Owen (maybe somewhat reluctantly).

The best is when it's me, Mr. Googly-Eyes, and Mommy and Daddy.

Thanks for taking all those great pictures Uncle Giddy!


btw: Make sure you check out Uncle Giddy's website.

drew

150 days old

11706 days younger than his mother







it's true. my child never wears pants.

kb

How lucky am I

To have both Grandmas (and one Grandpa) visit in the same week!
(We missed you Grandpa V)






And to be this cute:




(photos by Grandma V)