Normal...ish

"Desperate times call for desperate measures. When we are in fear for our lives, there is precious little we aren’t willing to go through to make it out alive. We will endure long hardship. We will put up with humiliating procedures. We will grit our teeth through pain. We will bite bullets, all hoping to get to that place where the worry will subside, and we can move forward knowing we’re going to be okay. At which point we go back to normal; we begin again to grumble against the smallest irritants, buck against the simplest requests and refuse the mildest indignities."

Well Enough to Complain from Ligonier Ministries Blog by R.C. Sproul Jr.

This statement, quite accurately, states my reality. The easier things are; the healthier Drew is; the more the normal occurrences of life take the forefront of each day. Not to make judgment on this fact one way or the other. It's just fact. Like when you do normal everyday tasks properly without mistake your efforts may seem unnoticed. But make one small accidental mistake and that gets noticed (I'm guilty of this often, or so I'm told). Like when a small sliver in your index finger is the biggest most painful inconvenience, but when that sliver is from a paddle that you are using to try to navigate a series of rapids in order to keep from capsizing your canoe the mild pain wouldn't even register. Not to belabour the point...

Drew is now 19 months old and doing great. We haven't experienced a breath-hold since September 8. Yup, 2 weeks. Last year during the same span of time we had 17 episodes and were visiting our friends in the ICU as Drew battled his first cold of the season. This time last year we were starting to process the option of giving Drew a g-tube to deliver his medication that we still don't know if it does anything but we keep feeding him, and were wondering what type of neurological damage Drew was experiencing from the hypoxia experienced from each episode wondering what exactly caused him to have these episodes while pondering other treatment options. Phew! We still don't know why these episodes occur or what Drew has but we do know that he doesn't seem to be experiencing any symptoms of long term neurological damage. Drew still sleeps with his ventilator at night. We don't know if he'll need this long term but we won't assess this need until his episodes are completely resolved. So, while not exactly normal, things around here are less stressful.

Because I'm lazy I'm pasting some excerpts written by Karla in a recent email update to our families:

We are actually doing really really well. I am loving the 18 month stage, Drew seems to be getting smarter every day and is constantly surprising us. In the last month we have had excellent appointments with neurology, respirology, and the pediatrician, everyone is very happy with his progress, and he is hitting all of his milestones as expected. He is still small but is maintaining his growth on the 10th percentile for height at 78cm and about 40th for weight at 25pounds. I guess he's just going to be short like his mom (sorry, kiddo). He's now done his regular vaccinations until he is 5, and our pediatrician said the flu-vaccine will be a nasal spray this year, so we are glad to be through with needles for a while (though I'm sure he's gonna love getting stuff shot up his nose!). We are very happy we've decided against the RSV vaccines this winter, although I'm sure we'll change our tune, if he actually does end up with a bad case of RSV.

Drew's latest love is books, real big kid books with paper pages. He has never ripped them, aside from lift-the-flap books where the flaps are occasionally lifted very enthusiastically. I think we'll go to the library this afternoon, since its rainy and we're getting pretty tired of reading Ivan the Terrier and I'll love you forever (we have lots of others, but those are the ones he wants over and over). He still loves cars, trucks, and hats. And he is still pretty bossy, he knows the routine and likes it to be followed, so if mommy sits in the wrong chair, or daddy leaves his clothes on the floor, he'll let you know about it. If you have a cup on the table beside you he will keep ordering you to drink until it is finished. On weekday mornings, I nurse him and leave him to play on the bed with daddy while I shower, so if I try to crawl back into bed after nursing on a Saturday morning, he really gets irate. Since it started raining on Tuesday he has been wearing socks for the first time in over a month, so first thing this morning he insisted everyone put on a pair of socks.

We still invite you to pray with and for us. While the uncertainty of Drew's condition and future prognosis is still uncertain it is a less prevalent concern for us as he shows consistent positive progress. However, it is still uncertain and still a concern. Pray that we don't worry about it. Pray also that we remember the blessings of being strengthened and supported during the roughest patches while enjoying the blessings of the smooth patches. Most of all that we thank and enjoy the Giver of those blessings.


db