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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