ten months




We’ve been working on clapping and over the last few days, Charlie started to *sorta* get the idea.

Just now, he crawled up to where I was standing, bent over and bit me on the big toe. When I let out a startled (and pained) “Oh!” He sat back up and clapped.

Looks like we’ve got that skill down.

real quick

UntitledI’ve been so remiss! Here’s a quick update before I sneak off to bed.

Charlie crawls, pulls himself up to stand and feeds himself. HE FEEDS HIMSELF. He gets mad if we eat cheese in front of him and don’t share. He likes beans and yogurt and squash and pears and… well, bacon. He loves bacon. He still has zero interest in drinking formula or breastmilk so the way this all works is that if at 12 months, he’ll start drinking cow’s milk, we can wean him off the button forever. I won’t lie. I’m willing to put chocolate in his milk to make that happen.

to every thing, there is a season

Punkin Three weeks ago, Charlie had surgery to (install? No, not the right word) place a Gastronomy tube (from here on out, the button). It was not a decision we took lightly but in hindsight, it’s one we should have made much, much sooner. It’s only been a few weeks, but already, this is a very different life we’re living. Mostly because we’re actually living. I’ve gotten out of the house more in the last weeks than I had in all the months prior. I no longer feel trapped. And I no longer feel guilty. The NG tube changed Charlie – it made him anxious and unhappy. It made us feel terrible, but we didn’t know what else to do, and with all the voices in the medical and therapeutic community assuring us he’d just *get* eating one day, we felt hasty and selfish moving to a more permanent solution. He hated that thing. I hated that thing. It was an anchor that kept me tied to the house, to my baby (whom I love most ardently) and to feelings of frustration and exhaustion.

Patiently Waiting for His Flu Shot Surgery wasn’t easy (here’s an “directly after” picture, for those who won’t be put off by a bit of ick). The few days following, just a cough or a sneeze could shock his little body with pain and that was very hard to watch, to know I’d caused, or at the very least, allowed it. I wondered if we’d been selfish. I did not wonder that for long. His recovery and return to happy, relaxed, easy going Charlie was quick and life changing.

We leave the house to take adventures. I have taken on a freelance gig – a small but crucial step toward normalcy for me. I’ve found reasons to put on mascara and use the blow dryer. Yes, he eats through a hole in his belly. That’s not exactly normal. But it works. So well. And as an added bonus, I get to see my son’s face, without all the tubes and tape. And god, it is such a beautiful face.

A Little Burt Reynolds Nature Walk Sometimes, He Takes My Breath Away

tube yanker

Tube Yanker So. Charlie wasn’t exactly the valedictorian of feeding therapy. He did make some progress toward the end (drinking almost six of his required 30 daily ounces of formula – that’s progress. Ahem), but by then, the insurance company wasn’t willing to grant the therapist’s request for more time. I wasn’t too upset. I mean, what was a week going to buy us? Seven ounces? Tomorrow we have a surgical consult to discuss getting a G tube. We left the hospital not intending to go that route – the doctors and therapists were hopeful that he’d just *get* it once he was home and in his own environment. A home health company delivered a feeding pump (!!) and all the necessary supplies, including our monthly supply of four feeding tubes. But in the last five days, Charlie has pulled his tube six times. It’s just not working. We’re all pretty strung out.