Dear dude with like 27 items in the 10 item lane,

I'm wondering if you've seen those commercials where someone does something nice for someone else, and this causes a passer-by to be nice to someone, because, I don't know, not being an asshole is contagious?

Have you seen these?

Well, today you showed me the Bizarro World version of those commercials. You dragged over your 27 items and laid them all out carefully onto the 10 item conveyor belt thing. You laid them out so slow, I think you might have been taunting all of us in line behind you. I could see all of our heads slightly bobbing in unison as we counted your many, many items. I watched the checkout girl clench her jaw as she swiped your olives and organics over the laser thing.

Then, I watched the lady in front of me huffily unload her items. She put them on the conveyor belt thing and then left her empty cart right there in line. Right there. She didn't even move it out of the way. Just abandoned it in the middle of the line.

I blame this on you, DWL27IIT10IL. You turned that lady into an asshole with your own assholery.

And then it was my turn. I bought my scant amount of overpriced fruit and caught myself glaring at the poor checkout girl. I was full on squinting at her like she had just peed on my car tire.

She hadn't peed on anything, DWL27IIT10IL. She was just doing her job.

It isn't her fault that she has a bouncy Sookie Stackhouse ponytail and infuriatingly white teeth. Or maybe it is. But I still shouldn't glare at her like that.

You Bizarro Worlded our line, DWL27IIT10IL, with your stupid groceries aplenty. Next time, mind the contagious assholery, OK?

Maybe if you paid attention to lame TV commercials, you would know better.

Sincerely,

Kari
concerned purchaser of quinoa salad, who does not need to be reminded that A) lots of people are assholes and B) she will never have a bouncy Sookie Stackhouse ponytail

Ring ring

So guess who called today? It took leaving some grouchy messages, but finally, finally, we got the call from the Cincinnati folks.

Long agonizing story short: he needs to get to 22 pounds (10 kilos) in the next 6 months or so (he's at 14 right now). He needs to stay healthy this winter – no lung damage, no aspirating. If we can get him bigger and keep his lungs healthy, Ike-a-saurus can have the laryngotracheoplasty (with an anterior graft) sometime this spring. They'll take out part of one of his ribs and use it to reconstruct his airway, and we'll be up there in Cinci for quite a long time while he recovers. I am desperately wishing for the surgery and desperately dreading it. Very confusing.

They are hesitant to do the surgery now, while he is so small for his age, because you can't put a giant airway into a small dude. So, if he's too small when they do they surgery, and then gets a lot bigger, his airway wouldn't necessarily catch up. Then the awful possibility of being re-trached comes into play.

For the next several months we're going to closely monitor his lungs and do our very best to fatten him up. Then, sometime in the spring, we go back up to Cincinnati, repeat a lot of the tests we just had done, and keep our fingers crossed that everything is a go for reconstruction.

This is going to be a daunting winter of scary viral threats: flu and RSV and nasty random things. I can see it looming in the distance. I literally hold my breath when I think about it. It makes my hands shake.

We just need a hell of a lot of milkshakes, a baby-sized gas mask, and some good luck, right? Too much to ask for? I guess we'll find out.

He’s 1!

we're keeping things calm
a quiet birthday at home
playing and laughing

When Ike-a-saurus was born at 10:50 am on August 25th last year, my body felt immediately calm. He was out, the doctor held him up for me to see, I heard a cry, I started to cry, and my body felt still and quiet for the first time in months. In an instant, the revolt against my pregnancy was over. My baby was born.

There is an irony here that is unmistakable. My body found a calmness just as the world itself fell away. But at the time, I didn't know the world was falling away. I was just happy to hear my new baby cry. And even though the doctors had to immediately put him on a ventilator, and I wouldn't hear him cry again for a long time, that one small noise fed my heart for days upon days. He was OK. He would be OK. And he was finally here – even though "finally" still meant 12 weeks early. We had survived a marathon, he and I. The shortest, longest pregnancy I'd ever had.

He was born on the first day of first grade for the wee one. It was a very busy day.

I think all of Austin stopped and held their breath when they heard Ike was coming. I think, maybe, we're all still holding our breath.

During those days in the NICU, when we would allow ourselves to think more than a few hours into the future, my husband and I joked about how Ike-a-saurus' first birthday would be filled with ponies and carousels and fireworks and unicyclists and a big brass band. Now that his first birthday is actually here, I feel a little guilty for not following through with our promises. And yet, the more I think about the day he was born – the things he went through, the things we all went through – I think a quiet a day at home with just our family is the way to go.

There was joy on the day he was born, lots of it. But there was fear, too. Fear, and uncertainty, and strangers, and bright lights, and loud beeps, machines, squeaky gloves, exhaustion, adrenalin, so much talking and information, me demanding to be taken to the NICU, even though I had to sit in a wheelchair while still hooked up to a catheter… It was not a quiet, family day. It was the kind of day when you have deer-in-the-headlights eyes, and a bag full of pee in your lap, and you don't give a flying flip who sees you like that because the elevator is the only way to get you to close to your new baby.

I didn't get to hold him when he was born. I didn't get to hold him for days.

We are making up for that today. We make up for that everyday.

Isaac Sawyer is 1. Did you know that superheroes have birthdays?

Tinytoes
2008

Photo(30)
2009

Happy birthday, my sweet boy. I love you so much.

The Balb

In case you're wondering, we STILL HAVE NOT HEARD FROM THE CINCINNATI PEOPLE. This could mean several things:

1) they are very busy

2) there is obviously no rush on their part to get the trach out

3) no one realizes how worried we are

4) all of the phones in the midwest have been stolen by an evil overlord

I did briefly talk to our point of contact early last week and she told me they would be meeting soon and she would get back to me, so I know the ball is rolling. I just didn't realize it was a 600 pound ball that I would have to push uphill.

I should not be surprised. Nearly everything doctor-wise is Sisyphean. We really shouldn't even call them doctors at all. We should call them The People Who Require Sisyphean Efforts of Not Getting Punched In The Ear. Because that's what they can fucking be sometimes.

However, I'm going to cut them a little slack because of this weekend.

Thanks to the Cinci folks, we came home from our trip with this cool little doodad called a passy muir valve. It fits onto the end of the trach and allows air to be breathed in, but not out. So in order to exhale with the PMV on, Ike-a-saurus has to push air up through his vocal cords and out of his nose and mouth. Cool, right?

The wee-er one had been referring to Ike's valve as "that tang on his
trach." Funny, but, uh, Sisyphean to explain to people. So, I told her she could call it a valve. Now she says, "that balb on his
trach." Better.

Well, because his stenosis is grade III (75% or greater airway obstruction), we were told by our doctor in Austin that he would never be able to tolerate a balb. The doc here wouldn't even let us try one out. In Cinci, though, they've come up with a way to modify the valves so that even kids like Ike-a-saurus have a chance to learn to vocalize.

When we were in the office up there, the NP was able to test the valve out on Ike, determine he wasn't tolerating it, and right there in the exam room whip that sucker off to the countertop and drill two holes into it with a Black & Decker cordless drill.

Fucking rad.

With the two tiny holes in the side, he can tolerate the valve just fine. It means he blows less air up through his cords, but at least he gets a shot at trying, right?

Well, he's been trying mightily. And this weekend he had some major success. Real baby noises!

But even better? Today, WITHOUT the balb, he made the exact same noises. It appears that wearing it has trained him how he needs to breathe if he wants to vocalize. He has been squeaking and honking all day. It is enough to reduce me to a slobbering puddle of weepy mama-ness.

I haven't heard his voice since February.

Hearing it fills me with such a loving peace, that at those moments I wouldn't care if the Cinci docs never call us. They've already given us his voice back.

I could just sit, snuggled up to my tiny guy's fuzzy head, listening to him proudly shout gah! and ah! and ah-ah!, and feel utterly content. 

He still can't vocalize a lot, and it takes a tremendous amount of effort on his part, but he has fucking outsmarted the balb. And this after our local doc told us we'd never hear his voice as long as he had a trach.

This is a lesson for me, because for this little dude, nothing is Sisyphean. Nothing is.

He's all, "Up yours, impossible task. I drink your milkshake, bitches. I drink it ALL."

I need to be more like that. It's time to drink the evil Cinci phone overloard's milkshake, don't you think? I'm going to drink. it. up.

Me and malls are like the sharks and jets, but with less singing

the final countdown
school finally starts Monday
we are happy sad

The wee one is very excited about school starting on Monday. We got some insider information today that his good friend will be in his class so he's even more stoked now. How he is old enough to be going into the second grade is mind-boggling. When I started this blog he wasn't even two yet. HOW CAN THAT BE? This means that

A) I am old

b) He is old

3) There is something creepy about the spacetime continuum

Today, he and I went out to search for some school clothes. I've already bought him a few things online, but when I bought them it was 4 am and I was kind of crazy, so we needed to go shopping today to sort of, uh, round out the selection.

No clothes to be found. Shelves were cleared. All the tax free crap starts tomorrow so I thought we'd get lucky. Oh no. Instead, the fates are trying to force me to take him to the mall. But I do not want to go to the mall. I detest going to the mall these days. The germy germy mall. Even the fancy mall.

Maybe – just maybe – I could be persuaded to go to the outdoor mall type thing and wander aimlessly, but even then you have to actually go into stores and dig through piles and piles of crap clothes that are illuminated by the kind of florescent lights that cook your brain until you leave the place with a migraine that will last three days. I'm all for making sacrifices for my children, but spending all day during a tax free weekend at a mall is WAY worse than, say, offering up a kidney, or drinking from a water bottle your 3 year-old had first (and that she drank from after eating vegetable crackers).

But that is just me. I am agoraphobic and germophobic and peoplephobic and drivingaroundtryingtofindaparkingplacein-
103degreeheatophobic.

Better to wait and join in on the Swine Flu Apocalypse after school starts, right? Seems like a better plan than catching something from a door handle at Macy's.

Hey! Speaking of the aporkalypse, do you think this will violate the dress code? Because if I was rich enough, I would totally get it for him for the first day back to school.

Instead, I am sending him with hand sanitizer, a kiss on the forehead, and a questionable wardrobe purchased at the height of sleep-deprived insanity.

Ah, second grade. I think this year really has potential.