13 January 2013

holy crap i didn't know if i'd ever blog again...

life got SO busy, and since my last post, we bought a house, moved to a new town, AND got married, among many many other things. but as a new year's resolution, i decided to get back into quilting, and participated in my first online quilting challenge through project quilting at persimondreams.com...

simple squares crib quilt

...which led to me reading a few other people's blogs. which led to me remembering, hey...i've got my OWN on of these things! so rowan's napping and here i am!

as the months go by, and rowan gets bigger, stronger, and smarter, i hope to make this less of a "life-with-a-medically-fragile-child" blog and more of a "hey-look-how-much-we-rock" blog. (hey, i think the world would be better if everybody bragged a little bit more about all the cool shit they do.) but in the meantime, things really ARE looking up. rowan hasn't been on the vent since sometime in I think October, and he did pretty well with all his capping trials (which is where we purposely plug off his trach to see how he handles it). it did make him a little winded, and when he fell asleep, he would sometimes have some problems, so I kind of wondered what was going on there. this past thursday, he had a bronchoscopy (i.e. a camera down his breathing tube to look around down there), and we found out he does have some airway narrowing above the trach. this is not unusual in babies who have experienced long-term intubation, due to scar tissue, trauma to the airway, etc... the doctor said it wasn't severe, but that it would probably need intervention. so I'm waiting to call his pulm nurse practitioner on Monday to see what we do next. I think it will be schedule an appt with an ENT (ear-nose-throat doctor), who would be the one doing said "intervention." Anyway, not exactly the news we were hoping for, but hopefully just a small bump in the road towards decannulation. in the meantime, Rowan is walking, talking, even eating a little too (when we bribe him with yo gabba gabba episodes) so i find it hard to get too depressed about it all.

the yo gabba gabba bribe method.

i could definitely type a lot more about all the stuff that's happened between last summer and now, but it might get a bit boring, plus i want to go organize a closet before Rowan wakes up and starts terrorizing the house again :)

tah tah for now,
 love erin

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