And it's done

Acorn has no trach - almost 12 hours without now. Took it out, put gauze and a piece of tape over it, and basically that's it, just sitting around now to monitor, and to wait for the stoma to close a bit. He doesn't seem to notice, but he does notice the nurses and doctors and residents and med students.

My spouse has Acorn duty tonight and tomorrow - I'm going to work. Then I have my turn staying at the hospital tomorrow night and all day Thursday.

Can I just say it's a little unnerving to be sleeping alone? I mean, I used to live alone. But it's been more than a decade since I regularly slept without anyone else in the house. And the last 2 1/2 years, there's usually been someone awake all night here, which just makes it more odd to me.

I think I slept alone one night this past spring when Acorn was in the hospital, but I didn't make it home until like 2 am after a marathon of pediatrician, ER, and hospital admission, so it wasn't sleep so much as falling over in exhaustion. Before that....it was the car wreck my husband was in (car vs. pedestrian, and he was the pedestrian) a few weeks before Acorn got his trach. Before that....I think my husband went on a business trip about 5 years ago.

Meh. I should pump and sleep, because it's already been a long week. g'night all.

Not Quite Trach Free

...but everything's a go for being trach free.

Acorn & his daddy went this morning without me, since my BP has been a little flaky the last day or so and we all agreed that it'd be better if I stayed up here and took things easy - though they were actually just downstairs from me.

Acorn did great, and his ENT says that his airway looks great. His tonsils are enlarged, but not so much that they need to come out (and after all his illnesses this spring, she's not surprised, and would rather wait and see what they do). His adenoids are fine. There's a bit of acquired malacia (sometimes called suprastomal collapse, caused by the trach itself proping one of the cartilidge rings that make up the trachea) - but not so much that he can't be decannulated (in fact, the collapse itself takes up far less space in his airway than the trach itself, and he's quite happy to have that capped all day, so it's definitely not an issue).

So....the ENT is ready to take his trach out. Just not today - she wants to give any irritation caused by her work time to resolve. It's now up to us to schedule a time to do that.

And given everything else that's going on, that may wait until after Leaf is born. We just can't manage this many complications at once.

giveaway today - runes!

Hey all - go over to Mrs. B's Confessions of a Pagan Soccer Mom for a chance to win a set of my really nifty rune stones. She's hosting a big month-long Halloween bash.

More fabulous news later today. I'm so excited, I want to share, but I have to update the family first

happy blogaversary to me

When I started this a year ago, I didn't really know what my goal was, other than to write.

I'm still not clear on the goal, but I'm trying to go with the flow - trying to get both the special needs side and the spiritual side of things in on a regular  basis, and trying to talk more about what we're doing with Acorn, spiritually  speaking...which means being a little more organized about the doing part of it.

I'm still surprised every day that people actually read what I'm writing too. I know I shouldn't be, really, but it's nice to know that there are people who find what I'm writing interesting enough to read it more than just one day and never come back.

Anyway. Thank you for joining me on this journey, and here's to another successful year of blogging!

Some good news for a change

In the midst of insurance wrangling and new specialists giving new names to things Acorn has always had (but, you know, naming them makes for more leverage to get what Acorn needs), we've had a few bright spots this week.

Acorn is working on getting rid of diapers. It's slow, and he needs a lot of reminders, and he's still learning to get those training pants off and on, but most days we are down to 1 soiled pair of trainers and a couple of diapers. It's an interesting switch for us, after more than a year of a dozen or more diapers every day.

He's also quickly weaning off his oxygen. Not at night yet, where we're often still running 1/4 liter or more at times, but during the day he can go at least an hour without (that's the longest we've tried so far). So most of the time, he's on 1/16-1/8 of a liter of oxygen now when we're out and about, which means a tank lasts forever.

The small windows of tubelessness open up a world of possibilities...going to the park without getting tangled, for one. Going to some of the local indoor play areas, which are sooo not child-with-tubing-and-tank-as-leash friendly.

And maybe, just maybe, a toddler gymnastics class starting in a month or so - he so wants to learn to do summersalts, and he's nominally at the low normal end of gross motor skills development for his actual age, so it ought to work. Especially if we don't mention any of those big scary medical words that might make them think he's not well enough to attend.

Because, thankfully, he's certainly well enough to do normal kid things - it's taken 2 years, but we're getting there.