a pancake celebration
with syrup, of course
I just uploaded movies from the Flip and found this little surprise. A pancake celebration!
a pancake celebration
with syrup, of course
I just uploaded movies from the Flip and found this little surprise. A pancake celebration!
Hey, so remember how I posted that long thing about finally getting our Cincy dates for Ike-a-saurus and how I was all in a tizzy about it and blah blah [insert freak out post here]?
Well. I got a call this week that the surgeon is now unavailable for the July dates. I actually laughed when the scheduler told me this, because, of course the surgeon is unavailable. Isn't that what ALWAYS happens when you talk about something on your blog and tell all your friends and ask people to send good thoughts out into the ether?
You jinx the ever-loving shit out of things.
So even though I should have been all, "Oh, DAMN, WHAT?!" I was just, "Of course he's unavailable. Ha Ha. Sorry, my fault."
The thing is, though, they managed to get us rescheduled. For the first week of June.
This means we leave in FIVE WEEKS.
I spent much of yesterday panic attacking all over the place. Going up there in June means losing an entire month of weight gain, which is pretty critical. It means I have to start getting travel plans planned. It means the wee one will have to miss the last few days of school. It also means my husband and Ike and I will be out of town for the wee one's 8th birthday. Mom fail. We will also miss the kick ass Star Wars extravaganza that we bought tickets for ages ago. It's a surprise birthday present for the wee one. I'm sure the grandparents can take the kids to the Star Wars thing, and I know trachs trump live Star Wars concerts, but still. Sigh.
Five weeks. We could get there and have to turn around and come right home. Or we could get there and have epic surgery, get the trach out and then come home. Or one of a million other less desirable things could happen.
Plane tickets, hotel, unpaid leave, finishing a book manuscript, figuring out a plan for the wee one and the wee-er one, not FLIPPING OUT. Suddenly, everything has to happen now now now.
Why was I speeding, officer? Because I am late for my psychotherapy appointment.
Why am I late for my psychotherapy appointment? Because I spent too long in the shower trying to psych (haha) myself to actually go to the appointment.
Why was I in the shower in the middle of the afternoon? Because I got up too late to take a shower this morning and I had to rush to get my daughter to school on time.
Why did I get up too late? Because my baby was up crying and I wanted to help his nurse soothe him.
Why does my baby have a nurse? Because he has a tracheostomy.
Why does he have a trach? Because his airway is too small for him to breathe.
Why am I making that weird air-sucking noise? Because you have just triggered the PTSD for which I was going to the psychotherapy appointment that I was late for because of spending too long in the shower trying to psych (haha) myself up to actually go to. The shower I was taking because I got up too late to take one in the morning, because I was up with my baby and his nurse.
Also, my registration is expired by two months. I have a good excuse for that, too, if you're interested.
Just a warning this time?
You have a nice day, too.
But you have to go here to read it. I'm too tired to do an actual double post.
Or too lazy?
Well, tired AND lazy.
T'lazy from t'LAH. (If you click up there and go to the post, this will ALL MAKE SENSE.)
three months from today
will be a heart-wrenching day
where's my time machine?
Everything is scheduled in Cincinnati. High-res chest CT on July 6th, bronchoscopy on the 7th, FEES swallow study on the 8th. If everything looks good, the surgeons are scheduled to do the laryngotracheoplasty on Monday, July 12th. A general surgeon will remove part of one of his ribs, ENT will graft the rib into Ike's airway, widening it to a normal-ish size.
There are so maybe ifs and unknowns to all of this. In order to have the LTP, Ike HAS to keep getting bigger (and he lost 3 ounces last week, so ugh). He HAS to stay healthy. He HAS to not be aspirating, even micro amounts. He HAS to have improvement in the bronchiectasis in his lungs. So many things.
We won't even know if he can get the reconstruction until the Friday before the surgery. We could very well be heading home on July 10th, knowing we have more time with the trach ahead of us.
But what if the tests all come back OK? What then? A rib graft in his trachea. 5-7 days in the PICU, intubated. Possibly another couple of weeks on the airway floor. More bronchs. Learning how to swallow and cough again. Learning how to eat again. Withdrawal from pain meds. A month or longer away from the wee one and the wee-er one.
But the result? The result is no more trach. The result is a relatively normal-sized airway that should cause no more problems, even during illness. He'll probably have to have a med-alert bracelet to warn emergency personnel that his airway is reconstructed, and tell them what his intubation tube size. He should not need supplemental oxygen when he's sick. He should not need nurses in the home. He should not need a mini-hospital in the living room.
I hate to even write these things. I work very hard on not looking into the future. If my horror of a pregnancy taught me anything, it was to only look a minute ahead. A day ahead. No further. So allowing myself to get these grand illusions of "what-ifs" is a little intoxicating. And terrifying.
What kind of mother wishes for her child to have a day long surgery that risks his life and puts him in intensive care for a week? That is a fucked up thing, you guys.
But we have our dates.
Now we just need to get there and make it happen.
What if it doesn't happen, though?
Shit. What if it does?
Sunday or Monday
you have to pick a fav'rite
neither doesn't count
On Sundays, while I'm staving off the inevitable Impending Sense of Doom for the week to come, I often have a few minutes of pure, unbridled optimism. I think, "I am going to cook a balanced meal every night for dinner this week!" and "I am going to start a regimen of sit-ups and push-ups and walking around the neighborhood every night so that I can look like Michelle Obama!"
So I do like every other woman does on a Sunday afternoon and I download a recipe app to my phone. I download a workout app to my phone. And then I sit on the couch and think, "Holy shit, I am SO PRODUCTIVE on Sundays!"
Monday rolls around and I wake up thinking, "OK, Week. I will face you. I have the apps to prove it." And things usually start out OK, especially if we've had a nurse on Sunday night and I'm reasonably rested. I greet Ike-a-saurus' day nurse, take the wee-er one to school, come home and have a nice hot shower and think, "See? This week is going to be great!" While I'm in the shower I plan out the menu for the night's dinner. I think about what a reasonable number of sit-ups would be to start my exercise regimen. I am feeling energized, positive, reasonably happy. I even plan on getting some writing done.
Then, I get out of the shower. 38 emails. 3 phone messages. A missing delivery of medical supplies. A web site that won't let me register so that I can submit out-of-network doctor visit claims. Phone calls. More phone calls. Sitting on hold. A nurse cancels for later in the week, so appointments and school pick-up and a million other things have to get rearranged.
Suddenly, it's already time to pick up the wee-er one from school. I dash over there, retrieve her, get her in the car and she starts screaming. She's over tired, she won't eat her lunch. Back home, more phone calls, discussions with the nurse about when and when not to mess with a baby's foreskin. Discussions about the consistency of trach snot.
Why is his stoma red?
(wee-er one screaming in the distance)
Let's put nystatin on it.
(wee-er one wants orange juice at the computer. No way. Screaming restarts.)
Do we have an order for nystatin so that the nurse is allowed to administer it?
(Why isn't Kipper playing? More screaming.)
Can't find the order.
(How about Play-doh instead of Kipper? Screaming.)
Email trach nurse.
Administer nystatin anyway. The wee-er one falls asleep face down on the floor. The wee one is home from school. He needs money/supplies/shoes/papers signed/homework help.
The nurse leaves for the day. Immediately after she leaves, Ike-a-saurus falls down the stairs with a poopy diaper. Much clean-up ensues.
And now. Now it's 5 o'clock. Am I going to make the meat loaf and potato gratin and fresh snap beans I was planning on?
No. I am going to talk to the medical supply company on the phone, arrange for spelling homework to commence, try not to step on the wee-er one who is still sleeping on the floor and who will, in turn, not go to bed at 7:30 as planned, all while keeping Ike from destroying the DVD player with the fork in his hand.
I always have good intentions. Big plans. Calm thoughts. And it all gets clusterfucked to hell and back.
Right now, though, it's Sunday at 1 pm and I am planning to make carrot risotto for dinner tomorrow. I am planning on firming my abs, eliminating this extra ass, and building up my stamina for the March of Dimes walk. I eagerly anticipate a moment or two of sexytime with my husband.
And I can't decide… is it eternal optimism that keeps me like this, or flat out idiocy that I never learn from week to week? The Impending Sense of Doom always wins in the end, doesn't it?
Yet, I still buy the carrots.
1. If they didn't call it "psychotherapy" they might get more people interested in it
2. When being reevaluated for early intervention services, it's not really fair to say a kid "can't yet open a door" when the doorknob is still out of his reach
3. Number 2 doesn't really matter, if he scores well, but still
4. Screeching at a child does not make said child want to comply
5. Screeching at a mama does not make said mama want to comply
6. No.'s 4 and 5 create an ugly ouroboros of mama/daughter communication (at least in this household)
7. It is important for your children to memorize your home phone number, but the importance loses its value if the oldest kid uses this knowledge to call you from school every other day to freak out about money and rashes. (Money for my milk! [use your lunch account], Money for a picture day pennant! [ugh], There are spots on my back, can my teacher put lotion on them? [uhhh…])
8. As soon as you tell your kid's trach nurse that he hasn't been sick in FOREVER, he wakes up with his eye sealed shut and green stuff leaking from his trach hole
9. There are no retroactive things one can do to make one's nurse happy after one's dog eats said nurse's breakfast bar
10. It takes a really long time to print custom temporary tattoos
11. Shouting "GET OVER HERE, YOU LITTLE BITCH" at a piece of grass on the kitchen floor that refuses to succumb to the vacuum is neither helpful nor a good learning experience for your impressionable audience
12. When asked if you would prefer Tai Chi or meditation and you respond, "Actually, I just want to hit things and break stuff" you get to watch eyebrows raise high, high, high onto foreheads
13. Acetaminophen is a wonder drug
hair pick resurgence
the young boy's hair resists, tho
fie on you, Nature!
For the past several weeks, the wee one has been very intent on growing out his hair. I even took him to a super hip place to get his hair did. The sailor-suit wearing tattooed man de-scraggled the wee one nicely, so that his hair could grow out evenly.
The problem is, I have misunderstood the plan for the wee one's hair. I was thinking he was going for a sort of Disney Channel-chic, you know… one of those early Zac Efron hairdos, or maybe even (God forbid) some kind of Justin Bieber thing.
The wee one and I were talking about his plans the other day and he was expressing dismay at how slowly his hair was growing. I, on the other hand, have been impressed with how quickly his hair has been growing.
"What do you mean QUICKLY?" he asked with disdain. "It's just laying on my head."
"Laying on your head?" I asked. "It's growing over your ears now, and your bangs are longer…."
"But it's not growing up! Why won't it grow up?!" he asked.
"Like a disco ball, mom. I want disco ball hair. That's why I've been carrying around that hair pick in my backpack." He said this all very accusingly, like I was purposely keeping him from growing an afro.
A) He carries around a hair pick in his backpack?
B) Hooray for diverse elementary schools, where young boys can envy their peers' "disco ball hair"
C) WHEW, that was a close call, J-Devil Bieber and your ass ugly hair
So now I feel bad. I've been encouraging him to grow out his hair, not knowing that I've been encouraging Mr. I-Have-The-Most-Non-Disco-Ball-Worthy-Hair-Ever to grow an afro. Dude.
I'm terrified that one day he's going to buy an afro wig and wear it to school. THAT'S going to be fun to explain to the principal.
A hair pick in his backpack…. this kid always keeps me on my toes.
Maybe he'll go for a fauxhawk?
About a million years ago, I wrote a letter to the Ellen show. I actually wrote it two weeks before Ike got his trach. I find this darkly hilarious because the letter is all about how shitty our luck was and how everything was terrible. LITTLE DID WE KNOW….
Anyway, it's taken from then until now, but I actually heard back from someone! I've been keeping it under wraps because I didn't want to jinx it, but holy shit you guys, Ellen wants us on the show!!
The producer is calling me back at the end of the week with a shooting schedule. Holy shit.
I thought you'd get a kick out of the letter, so here it is in its entirety. Please, let us all pause and laugh hysterically at the SHIT LUCK I brought upon this house by writing this letter, all thinking to myself, "Well heck, there's no way things could get worse."
Cynically cynicalness aside, here's the letter in all its glory:
Hello, Ellen's Producer-Minion!
I find myself in something of a
vortex of suck, and I thought that really, things are in such a surreal
state of constant WHAT? that writing a groveling email to the Ellen
show is a completely expected and required next step.
I'm writing this because I need someone to figure out
how to destroy the black cloud hanging over my house. I'm not sure if
Ellen can do some kind of voodoo dance, or if she could get Steve
Spangler to create a science-y black cloud sucker-upper, but I know she must
have some tricks up her sleeve.
Here's a quick rundown of the drama:
Last July my son was born three months early. I had already spent 5 weeks in the hospital, then he spent 8 weeks in the NICU.
But he's OK. Yay! And my other two kids are almost recovered from the ordeal. I may never recover. Holy crap, that sucked.
Fast forward to January 2009. After creating a "Suck it, 2008"
Facebook group for everyone else who had a terrible year, I was really,
really looking forward to 09. But then, in rapid-fire succession, I
came down with mastitis and my infant son came down with croup.
Back into the hospital he went.
The wily croup didn't go away, though, so we were off to visit some specialists.
was just diagnosed with laryngomalacia (sounds scary, but is not. It
means he has a floppy larynx. Crazy, right? It always sounds like he's
gasping for breath, but thankfully it doesn't actually affect his
breathing – unless he has croup). So there's that.
AND THEN, THEN, one week after the baby was discharged from the hospital, my husband was laid off.
what brings me to you. I know Ellen can't create a job for him. And I
know she is probably un-practiced in creating non-floppy larynxes. But
maybe she would like to mention my book on the air? I actually have two
of them. Haiku Mama (because seventeen syllables is all you have time to read) was published by Quirk Books in 2006, and Mike Stellar: Nerves of Steel is launching on June 23rd (Random House Books for Young Readers).
I know she probably doesn't have time to read them and that's why
I'd like to offer to mail her not only copies of the books, but my
friend Amy The Librarian as well (Amy was also recently laid off
because apparently my bad luck is contagious). Amy is pretty tiny and
climb into a box if I use donuts to lure her in it and trap her. She
can follow Ellen
around and read the books to her, just like the announcers on those
Geico commercials. Then, if Ellen likes one of the books, she can
casually throw it into some conversation on the show. "What, Lauren
Graham? This piano medley reminds you of wanting to buy and read Mike
Stellar: Nerves of Steel by KA Holt? But of course!" A million billion people will
then buy a copy of the book, and all together they can put them in
slingshots and shoot them at the black cloud over my house.
I don't need to be on the show or anything, my social ineptness is
quite amazing. I would probably turn red, fall down, possibly catch on
fire, roll into a flock of geese and then have to be landed on the
Hudson. Not pretty.
But maybe Ellen could mention one of the books. Amy The Librarian
and I would be happy to reciprocate by mentioning Ellen on our podcast.
And since we podcast in our Hanes underwear (because we have no money
for clothes), we are hotly anticipating a Hanes sponsorship soon. This
will bring us some fame, of course, and we would be happy to share that
I look forward to hearing from you, Producer-Minion. I am buying donuts to lure Amy the Librarian into the box, as we speak…
All my best (which might actually be contaminated with my effed up luck, so watch out),
Kari Anne Roy
What did you think? Funny, yes? Also, all a lie. We are not going on Ellen. April Fool's!
(The letter is real though, I just never had time to send it.)
(Note: I got Ike's birth month wrong)
(Also note, Amy and I do not have a podcast, though we constantly threaten to start one.)