Thursday, May 29, 2014

peek a boo

Calder’s new favorite game is Peek-a-Boo, and he likes it best when he controls the pace, choosing when to pull the blanket over his eyes and when to pull it off. Occasionally, over-his-eyes-time doesn't even make it a full second before he wants to see me react to him pulling it off. Sometimes Mom can’t keep up. He likes playing rougher with Dad, who always seems to get laughs with a little tummy action.

he he he
nothing to see here.
Calder cannot get enough of standing. Can’t get enough. He breaks into a huge, happy-man smile and starts slapping his feet all over the place while you keep him balanced. As soon as he picks up some coordination, he is going to be cruising our couch like nobody’s business.
don't make me eat CARROTS!!
He is still averaging about two tube-feeds a day (sometimes one, sometimes three.) He never wants to eat right before bedtime at night, so we are always tubing him them. When the tube goes away someday, his propensity to skip second dinner could get interesting, and means we’ll probably need to change our regimen. Based on experience, I doubt our boy would sleep well on an empty stomach. The tube has been a boon and a burden, and I’m sure I’ll feel the same way when it’s gone.

Thankfully, we are finally almost officially out of isolation. Being out doesn’t mean it’s okay for him to get sick, that his lungs and immune system are magically better. What it means is that because of the warmer weather, the risk of getting sick has gone down. We’ll see what the docs say and hope Calder gets to do a little more hanging out.
who dey

Sunday, May 25, 2014

over the river and through the woods

Holy moly, where did May go? I’ve been trying to get all caught up on blog entries from March and April and in the meantime, May flew right by.

Calder is making awesome progress on the G-tube weaning. I can say that now, a month after we started getting really aggressive about it, but really up until now it felt to me like it was slow-going. All the doctors have been so laudatory about his development that I suppose I just had very high expectations, thinking that as soon as we let him dictate the amounts by bottle and the schedule entirely that he would dump the tube within days. Of course, that’s crazy talk, and we have made a considerable number of adjustments since we started. At first, I swayed heavily toward his preferences, hardly tubing him at all, and trying to skip the 6am feed, as the doctors suggested. But nowadays, we are waking up at 6am even though we know he can either a) sleep right through it or b) fall back asleep very easily with a tiny bit of help because we have found that 6am is when the man really likes to chow down. When you’re trying to wean, there’s no sense in missing such a great opportunity. If he doesn’t eat well at 9am (say, at least 2.5 oz) we tube the other 1.5 – we’ve learned that getting off to a strong start seems to set the tone for the rest of the day. (Hey, sorta like they tell you to eat breakfast, right?) His eating has become much more predictable, although we still have our days where we have to tube him three or so times. But we’re getting there.

The Many Faces of Calder

The oxygen is still technically around, too, but at this point we have been instructed to just test him with the pulse oximeter several times a day and/or a few nights a week, and if he continues to sat fine, discontinue the oxygen, too.

i got this
Cristiane says he is doing much better with sitting. Still not sitting unsupported because there is always something more interesting behind him that he has to bend backward to see. At this stage he should no longer be using that reflex, the whole arching his back business, we’re told, but we do see it less and less. We catch him in his crib all the time now up on his knees, sticking his little bum up in the air.

Saturday, May 3, 2014

back to the grind

This past Thursday was my first day back at work. Okay, “back” is a relative term. I do get to work from the comfort of my home for a few weeks as I continue to supervise Calder’s care, an opportunity I consider a great luxury and such a blessing! I am thankful for the gracious and understanding supervisors I’ve had throughout this whole beautiful mess.

And yes, it’s still a little bit of a mess for my very Type A personality. On our new regimen, Calder has been anything but predictable. Ginny gave rather nebulous instructions about how to decide when to tube him every day, so at each feed a decision needs to made. It’s not that our nurse cannot handle making this decision herself, not necessarily, but for what I consider such a crucial process, I feel it’s my mommy duty to help guide these decisions, to at least set some parameters, and that means that through the early stages, I want to be consulted. I know that for most kids, eating comes naturally. And while Calder clearly has the drive to be gobbling things up, at least sometimes, it’s not quite that easy, and there’s a little bit more riding on his ability to do so. It’s not just like hey, my kid might become dependent on this paci, I don’t want him to be nine years old and still sucking on it. For me, it’s more like hey, I don’t want my kid dependent on this G-tube when he’s in elementary school. Heck, daycare, for that matter. I could be a little overly anxious about this, I admit it. But let’s just say that for now, I take some comfort in the fact that while I’m upstairs teleworking, our nurse can easily pop upstairs to check with me my opinion on when to tube him, and when not to.

wait, whaaaat?
okay, i see your point.

only missing the mint julep
We tried more solids Wednesday night, without a highchair still, and my mom was less than convinced with this new approach. Can’t say I blame her – there was unquestionably more apple on the table and on his clothes than in his mouth – but hey, desperate times call for desperate measures. I’ll try it all!