A break amidst the storm

For a brief 48 hours, I sojourned ALONE to the scarily fast-paced pre-Superbowl frenzy'd DFW area so that I could participate in the Cowtown Book Festival, and then fall down, prostrate, on my sister's living room floor and watch 30 Rock until unconsciousness overcame me.

It was lovely.

This was the first time I've ever left all three kids and taken a short adventure of my own. The book festival was great fun – and just low key enough to ease my way back into a world of mostly grown-up-ish-type-people.

Besides eating BBQ and listening to Lady Gaga and signing books and getting some blisters, I got to sit on a panel of other middle grade and YA authors and answer questions from librarians. I have to tell you – it is just so.much.fun to do things like that. Co-mingling children's book writers and school librarians is like a big, geeky explosion of book nerd fun.

And this trip was especially important as the State of Texas does its best to destroy libraries and librarians – not just at school district levels, but at a state level, too. These kinds of get-togethers show the passion and the numbers behind the support of books and libraries. It is immediately evident that a librarian is not just a person who scans a book and scolds you for being noisy. A librarian is more like a highly educated personified Swiss army knife of a person. A book buyer, a researcher, a teacher, an IT whiz, a mentor, and so much more.

I guess it can be easy to lose sight of the importance of libraries to those of us who are surrounded by google all day. But don't be fooled – a library is the heart of a community. And even as the world shifts into an electronic mode of Kindles and wikipedia, a library can – and will – still thrive.

So here's to you, Region XI librarians of the State of Texas. And librarians everywhere.

You are vital not just to our school children, but to our communities as a whole.

And you also know how to point a girl towards some good Fort Worth BBQ.

If you hear sirens….

She has great big eyes!
She's such a sweet little girl
Yeah. Her name is Ike.

The time has come. Ike-a-saurus needs a haircut. At 29 months, he's well past the time little fellas usually get a cut, but we were busy and wimpy and didn't want to get any little hairs in his trach. Plus, it took forever for him to even have any hair. Once it came in, it was so fluffy and curly on the sides, who could bear to cut it?

So, yeah, mostly wimpy.

But now, after hearing someone call him a her for the six millionth time, we're ready. And we're going to attempt to do it (wait for it) AT HOME.

Cutting his hair at home has several pros and cons:

1. Not exposed to ebola when sitting on never santized fire engine hair cutting seat
2. Can take a break halfway through when he runs away screaming
3. Can possibly cut his hair while he is sleeping
4. Free

1. Cut chop off an ear and/or stab him by accident
2. Cut off a parental finger or cause substantial wound in finger/hand
3. Make it appear as if the haircutting was done by a firecracker explosion
4. Can't find a comb

As you can see, we have thought this through with lots of detail and planning. We will attempt the haircut sometime this evening, either during or after bathtime.

Stay tuned….

Ow. My face.

suck it, juniper
we could set you all on fire
breathe better in smoke

If you live in Austin, you know about Cedar Fever. Those stupid juniper trees EXPLODE IN THE SKY this time every year, causing all denizens of ATX to have their sinuses implode, repeatedly, over consecutive weeks.

It never used to bother me. I was in, like, the 1% of people who were all, "la la la, cedar whatnow?" But this year, MAN. I can feel an area on the left side of my head, where my sinuses have expanded to reach up into my brain, only so they can collapse in on themselves. I've woken up the past three days in a row gagging. Nice.

I can't figure out who I hate more today, the cedar trees, or Rick Perry. If only the cedar trees had a $9.4 billion rainy day fund they could tap into to save decimated school districts. Maybe then we could be friends.

Live-blogging the Golden Globes!

I can't decide the best way to go about this tonight: seek out caffeine or seek out alcohol. Tipsy live-blogging or hyper live-blogging? A difficult decision. I guess I could add some jack to my Coke and try to attain the best of both worlds.

This feels like an inappropriate conversation. But since it's before the Golden Globes, I think it gains some ground.

6:30 pm: OK. So. You have a half an hour to finish up whatever it is you're doing. The stars are all over the red carpet, boringly talking to Carson Daly. This is an excellent opportunity to lock the kids in their rooms, dig out the Bluebell, find some BBQ chips and alienate your spouse by saying suggestive things about Brad Pitt and/or Tina Fey. This will empty the room for you. Trust me. It works every year.

6:45: Still haven't settled on a drink, but man I love Michelle Williams' hair. How cute is she? Seriously. I try to get my hair cut like that, but with the curls it turns into this.

6:57: No jack in the house. Have settled on rum and Coke. Check. Children upstairs in the bath. Check. Alienated spouse upstairs helping children. Check. BRING IT, HOLLYWOOD.

7:01: Ricky Gervaise gets that bribe thing out in the room early. Also, there is a glass of wee on his dais thing. I know it's not called a dais, but I can't think of what it's called right now.

7:03: PODIUM

7:04: Shot of Steve Buscemi when Gervaise mentions Boardwalk show and Walking Dead. I would be hard pressed to guess which one he's on. Dude needs some sun. Also, there was a penis joke in there but I missed it because I was trying to figure out how to spell Buscemi's name. MORE RUM.

7:08: Scarlett Johannson is so fancy pretty that she even makes bride of frankenstein hair pretty. Hey! Christian Bale just won an award. He is very hairy tonight. Like if you were super extra drunk and saw Russell Brand, you might think he looks like Christian Bale does tonight.

7:11: Obviously no one thought Katey Sagal was going to win, because they sat her over on the dark side of the moon. I really wish she had one giant eyeball in real life.

7:16: Julianne Moore is wearing a satin-y, snuggie type one-armed version of my Old Navy fleece pullover!

7:20: This guy from Carlos is so nervous. He sounds just like I did when I was in the ninth grade and tried out for swim team and I jumped in the water and it was like 60 degrees.

7:21: Ashton Kutcher's dad. Haha. Bruce Willis looks a little botox-y tonight, no?

7:24: Chris Colfer! I just clapped with the crowd!He is pale and sparkly as a Cullen. Sweet boy. I want to hold his head against my boobs.

7:27: "To help close the calcium gap" says the yogurt commercial. Does this not sound like something regarding a fontanelle?

7:31: Terrified by ALice in WOnderland. Just so you know. You could chase me around the house with the DVD and I would scream like a little girl.

7:33: Not TV series drummer, FYI. TV series drama. (In case you were briefly confused as I was.) Steve Buscemi continues tonight's theme of awarding the sickly pale. Also, he has girl hands. But that's OK. As long as his hadnshake is firm he can be my friend.

7:37: time to take a break from the rum

7:39: Boardwalk Empire wins for Best Dramatic TV SHow That Is Not A Movie or Any Other Thing That Would Make The Title For This Award Longer. I've never seen this show. Imma have to watch it. SOmething needs to tide me over until the zombie show starts back up.

7:44: Poor facebook actor guy. That is going to go on youtube and then facebook and his friends are going to like the shit out of it.

7:48: I think in every award show, with every award, everyone should probably thank Cher for being a bad ass.

7:50: Trent Reznor! Fucking A!

7:51: Why did they just show Kevin Bacon? Did Trent Reznor thank him and I didn't hear it over my chip crunching?

7:52: The wee-er one just shouted down to me from upstairs, "You better stop eating those chips! You're going to get a tummy ache!" She's probably right.

7:55: That Bieber girl asked me out on a date in college once. She hasn't aged AT ALL.

7:57: Toy Story 3 wins! Camera pans to all actors over the age of 60. ?

8:00: I'm a little worried that Robert Downey Jr. has the same hairdo as all of the mamas in 1950s TV shows. Also, Helena Bonham Carter is in full on Belletrix mode tonight it appears.

8:04: Annette Bening looks like a crazyface tonight. Like she wants to be in a sweatshirt and drawstring pants, with a cup of tea, railing about her asshole cats and why nothing good is on TV.

8:07: I need some crazyface tea. Well, green tea will do. My husband just rolled his eyes at me and left the house. Presumably he is going to pick up something at the Redbox that does not include a wifely character shouting at the TV, madly typing, and spilling rum & Coke dregs all over the couch.

8:10: The question is: Who will be the first person to punch Ricky Gervaise in the face tonight? The second question is: Why does Sylvester Stallone have a neck like that? Third question: Why is Tilda Swinton wearing my sheets?

8:16: Al Pacino and Annette Bening must have come to the globes on the same pedal pub.

8:17: After watching My So Called Life so many, many tomes, I feel like I know Claire Danes. Like I can be all OMG, my friend Claire just won a Golden Globe!

8:26: "Screenplays we could have written if we had time." Haha. Me, too, Tina and Steve. Me, too.

8:27: Husband just peeked into the room: "They made a movie about the arm guy?" You can see how often we get out of the house.

8:29: How is it fair for Sofia whatsherface from modern family to be so glamourous and giant-boobied and still seem so funny and regular?

8:36: Whoa. Internet fail. Sorry, Jane Lynch, that I couldn't post about your false humbleness. Just know that I laughed and nodded my head knowingly.

8:39: "This movie was inseminated…" I am not a fan of this metaphor. But is has inseminated the thought that maybe I need to get up and have a little debbie fudge round. And then I will gestate that fudge round until it is birthed into my thighs.

8:40: See? Gross.

8:41: Laura Linney? What? Is that show really so good? She is always the helen hunt type actress where you can see the director's instruction written across every inch of her face. Also, I'm afraid that if I ever ended up at a dinner party with her she would not like me. Maybe because I just insulted her.

8:46: I will never not laugh when Tina Fey does her Julia Roberts laugh.

8:47: Jane Fonda looks aweome. But a little like when she's done talking she's going to fly off the stage going CAW CAW.

8:49: Anyone remember Jim Parsons from Dancer, TX? Or wait, was he in that movie? Am I making stuff up again? I think maybe so. Was there even a movie called Dancer, TX?

8:51: Melissa Leo wins! Her hair color is really pretty. That's all I have to say because I haven't seen the movie. But I can tell you it was filked in Lowell, MASS, where my BIL is from. SEE, CHRIS, I REMEBERED TO SHOUT OUT THIS TIME.

8:53: Or, you know, filmed in Lowell.

8:59: If my hair grows out just a little bit more, and I start using way too much conditioner, it will be the same as Robert DeNiro's.

9:04: Lots of clapping. Shot of gross boobs. Lots of clapping.

9:07: During this long speech I will take a moment to comment on the sleeves tonight. Lots of sleeves. Square sleeves, pointy sleeves, shoulder-padded sleeves. Ugly sleeves. Not a fan of all the sleeves on the ladies dresses tonight.

9:09: "You just hope you can keep them in private schools." What? Robert DeNiro's kids are in AISD?

9:11: Jesus. This Abilify commercial is like the super happy fun ball.

9:13: Megan Fox is turning into a Bratz doll.

9:15: David O. Russell. He directed that movie that I like. The one with George Clooney and the Iraqi war. He didnt' win, though, so this meandering struggle for my brain to work means nothing. Another David won. but I missed it because I'm trying to remember this David O Russell movie. It had Marky Mark in it. COME ON BRAIN.

9:17: Three Kings! Yes. 10 points to my husband.

9:18: Glee! I guess I might have to start watching that show again. The fake pregnancy/awful wife thing was so tedious and I couldn't take it anymore. Are they done with that now? They must be.

9:22: With the TiVo and the Roku, I forget how handy commercial breaks are for peeing.

9:24: So did they yank Gervais after he insulted the Hollywood Foreign Press guy? Or is he just off getting his ass kicked somewhere?

9:26: Halle Berry is looking a little gaunt. Paul Giamatti, less so. Wow, that was the longest silent bleep out ever. The fuck did he say to Halle? She didn't hit him, so that's good. I guess.

9:29: Multiple people just tweeted, "Wait, is Jake Gyllenhall dating Jenny Lewis?" Which I totally read EVERY TIME as "Wait, is Jake Gyllenhall dating Jerry Lee Lewis?"

9:35: Natalie Portman wins! She has an adorbale baby bump! The second of my three children just woke up! I hope she knows what she's in for.

9:36: Natalie's super extra dorky laugh is really, really great. There's my overeducated brown-haired girl.

9:38: gervais is back! He does not appear bruised. On the outside at least.

9:40: The Kids are Alright wins for Best Comedy or Musical! Hooray for the gays! They are SWEEPING the awards tonight.

9:43: First: the Golden Globes. Next: marriage

9:46: Ooooh, no to the bangs, Sandy. They are getting caught on your eyelashes.

9:48: Quick! Colin Firth, Alec Baldwin or John Hamm? Quickie behind the bleachers. Choose…. now.

9:49: Has just been pointed out to me that my shouting out about the gays might not have been nice. I meant it nice! I swear! I am trying to be funny and sardonic. No? Not working? It has been further pointed out to me that I am not Kathy Griffin and that is why I oughtn't say things like that.

9:54: Michael Douglas looks pretty good. A bit like my grandma.

9:55: The Social Network wins for Best Drama. (Just as it does every night on my computer.)

9:58: Odds on Ricky Gervaise being invited back to do this again? Small. Odds that I'm going to go in the kitchen now and strain the vegetable broth I've been making all day? High! Good night, everybody. Thanks for hanging out and watching me make an idiot out of myself. but at least my boobs were covered and no one had to stick any needles in my face beforehand. Always a plus!

Just because you’re paranoid doesn’t mean they’re not out to get you

I'm trying to write a haiku to sum up the last week or so and words fail me. First with the RSV and the terrifying prospect of Ike-a-saurus hospitalized, or even hospitalized out of state. And now this: a proposal to close down the wee one's school. 

I realize that comparing the closure of a school to the delicate health of a two-year-old seems like apples and oranges, but it's big jarring news in a household that has become used to big jarring news. (Ike, by the way, is finally doing much better, though still on oxygen off and on and still struggling to open up that area of atelectasis in his lung – he's better, though, and for that we are grateful!).

We've searched for years to find the right school for the wee one. I've camped out to secure him a place in a new school, only to have the transfer denied because the school is full. I've researched, filled out forms, agonized over the choices – only to have the transfer denied again because the school is full. Then, a few weeks into the school year this year we got a letter. The wee one was in! IF we were willing to switch schools mid-semester. And as difficult as it was to decide, we went for it, knowing that the new school was smaller, offered exciting learning opportunities, was beloved by friends, and would be a better overall community fit for our family.

So we did it. The wee one finally got in, paving the way for his little sister and brother. And he loves it. I love it. Today they began learning Shakespeare. This weekend we will furiously finish a bristle bot-inspired science project. He learns spanish, plays the recorder, has recess (which is not a given for third graders anymore), and even with all of these "extras" the school does fine on the irritating, mandated testing. Better than fine, the school rates Exemplary. It is a congregation point after classes for kids and parents to play and chat. It's where the neighborhood votes. It's diverse and respectful. It's where we would buy a house if we could figure out how to fit five people in a 1960s-era 1500-square foot house. (We're trying, believe me.)

And now, our new school, a school that has been an Austin institution since 1950, is being threatened with closure. And it's not just our school, it's many other elementary schools, too. All small community schools, many of them also rated exemplary by the state.


Money, of course. The district is in a hole. A deep, deep hole. And despite that lack of money, they have scraped the barrel to pay quite a sum to an outside consulting firm, and to a new superintendent – who see only negative dollar signs instead of thriving schools.

But the thing is, our school isn't full of negative dollar signs. Despite woh-woh head-shaking from the school district based on faulty numbers gleaned from a decade old census, the neighborhood is bursting with kiddos (as is evident by our transfer requests being denied initially). Not to mention, the city of Austin is falling all over itself to attract more people – families especially – to live in these urban neighborhoods. One of the ways they attract families is to do what? Fawn over the small, community-driven exemplary neighborhood schools. And yet, the school district says this area of the city is in decline. That the building is old and needs repairs (are they forgetting the bond election a few years ago that paid for an overhaul of much of the school?).

I know these are probably snooze-worthy details making for an epic blog post, but I'm reaching out, scrabbling for anything that can help me understand what is going on here. The state wants successful schools. The city wants successful schools. The school district wants… to close successful schools? It just doesn't make sense.

I know they are coming at this purely from a numbers standpoint, but even that has weird explanations. Close the school, but don't sell it. Don't knock it down and build a bigger school to house all the students from the four schools in the immediate area facing closure. No. Just empty it. Let it sit there. "Mothball" it. And then, in five years, when the other schools – where they want to move the population of our school and the other potential closures – are bursting at the seams, what will they do? Re-open the mothballed schools? Pay bags of cash to update them and clean them up? Does that save money?

Times are tough. We all know that. I feel like my family has been the friggin' poster family for "Times are Tough." It wasn't that long ago that Tough Times had us buying our groceries with a list of approved WIC items and donations from our friends. There were medical bills. A fragile child requiring 24/7 care and Cobra insurance that, while costing thousands of dollars a month, would not pay for said care. There was searching and searching and searching for work. And then figuring out HOW to work when the baby needed the care we couldn't get nursing for. Then, things got a little better. The Medicaid waiver was approved. We got home nursing. Work surfaced. We found a routine. We could buy our own groceries again.

So, yes, I understand negative dollar signs. I understand them more than I ever want to.

And do you know what happened during our negative dollar sign days? Our community stepped forward and saved us. Our community came together, rallied, bolstered us, held us in its embrace.

Now it is our turn to save our community. And we're trying.

We're trying really hard.

These schools really are the heart of their neighborhoods. The heart of the community. We breathe life into them just as they breathe life into us.

And we embrace them. We will not let them go.


I started this as a Facebook status and then was like, whoa, this is going to be WAY too long. So blog post it is!

Kind of a rough night last night. Ike was up to 4 liters per minute on the nasal canula for a bit, which was Not Cool so I had a long talk with the pulmonolgist on call about hospital versus no hospital. We decided on no hospital but only because our house is still (thankfully) like a hospital (and Ike's liter flow per minute went down). We have the oxygen. We have the proper regulators for the tanks. We have a concentrator if the tanks run out before we can get refills. We have a pulse oximeter. We have two different kinds of nebulizers and enough saline bullets and xoponex to last a while. We have a nurse on Fridays (and can get more nursing if we need it). Etc.

I say that, just because this is not for the faint of heart. I don't want someone who's kiddo has lung issues (or is a former preemie or whatever) to stumble on this blog and see that Ike has RSV and is at home and have them think it's easy and safe to manage. It is not easy. And it's only safe(ish) because we have the equipment and staffing we need, and we have two years of crash-course at-home medical treatment experience. The hospital can only provide therapeutic care for RSV, which is the same care we have here. The only benefit to being at the hospital is if he crashes, we're minutes from the ICU instead of an ambulance ride. That's a pretty big benefit, but after our visit to the pediatrician and the pulmonologist, everyone agrees that Ike will be more comfortable and hopefully get better faster with constant care at home.

I didn't even tell you guys that after we got home from the pediatrtican's office on Monday with the RSV diagnosis I got a call from the ER (we had been there on New Year's day) and they had re-reviewed his chest x-ray and wanted to treat him for pneumonia. Well, the ER never tested for RSV and our pediatrician said that Ike's x-ray looked like an asthmatic with pneumonia because that is exactly what an x-ray looks like when you have RSV. So lots of back and forth between the ped and the ER about whether Ike needs sntibiotics. His CBC was normal, so it would be a viral pneumonia. But his ear is infected so we decided to opt for some Omnicef.

Crazypants, right?

THEN, we saw the pulmo today and he showed us the x-ray. Ike's lungs are overinflated (which looks like ashthma) because of the bronchiolitis from the RSV. The white patch does not show pneumonia, it shows an area of collapse. Too much mucus = atelectasis, which is a fancy way of saying the middle part of his right lobe is kind of collapsed in on itself.

This kid. RSV, atelectasis, oxygen, ear infection, and he's in the doctor's office saying Bye to everyone and choo-chooing because he saw a train out the window.

So we're home. For now. No one is sleeping. We're doing a million saline nebs (because the xoponex/albuterol drops his sats), lots of banging on his chest, steroids (both oral and inhaled), antibiotics and motrin here and there because it is magic.

Bad: RSV

Good: No additional pneumonia right now

Bad: collapsed area of lung

Good: still wanting to sort of play and yell at people

Bad: Stupid medical supply company sent the supplies requiring a signature and we were not here when UPS came so we won't get the supplies until tomorrow.

Good: At least we can get supplies delievered to the house

Tired. Scared. But happy to be avoiding the hospital for now.


Please forgive the ensuing language

Those cocksuckers at Caremark did this. Well, they didn't come to our house or the store or hospital in Cincy or wherever and infect Ike with RSV, but they might as well have.

They denied all our appeals for Synagis. They disputed letters from our pediatrician. Sent ME a nasty letter saying Ike would not qualify.

Because of his age.

The medicine is dispensed based on weight. Ike is THE FUCKING SIZE OF A 16 MONTH OLD. He has chronic lung issues. The AAP says Synagis is indicated for premature babies and other babies AT THE DOCTOR'S DISCRETION. But Caremark denied us anyway. They drew it out for so long, we don't even have time to fight with Medicaid about whether or not THEY will approve it.

I hate Caremark with the same fiery hot anger that I saw in Ike's doctor's eyes when he said the RSV test was positive.

Thank-you, cocksockers, for not approving a medication that could have prevented this. Now my baby has RSV – a respiratory virus that can be fatal or cause long-term permanent damage in children like him.

The only reason we aren't in the hospital is because we have oxygen, equipment and access to nursing at home. Which doesn't mean he won't be hospitalized, it just means he isn't right now.

So, fuck you, Caremark. I hope you enjoy paying for all of the medications and therapies we'll need that we wouldn't have needed otherwise. Because now, instead of saving the money you thought you did by denying us the Synagis, you've cost yourselves a shitload more.

And also, the whole pediatrician's office is so angry I think they might grab some pitchforks and torches and track you fuckers down.



You hear that, 2011? I AM STUBBORN. SO STOP SUCKING.

New Year's in E.R.
we'll just get it over with
early in the year

Ike and I spent New Year's Day enjoying some quality time in the E.R. He was having nebs and chest x-rays, I was having a minor emotional breakdown. But today has been somewhat better. We avoided spending the night at the hospital and I have thwarted further attempts at melting down with "at least we got the trach out in 2010." I am trying not to go down the path of "what if we have to get the trach put back in?" mostly because we just got back from Cincy and Ike's airway was deemed age-appropriate and healing beautifully.

So the fact that he is sick now and needing oxygen is not an airway issue. ARE YOU LISTENING, SELF? His airway is fine. His airway will not seal itself off. His lungs are a little gimpy from being a preemie and from aspirating just after the trach was put in. Time and size should hopefully fix that. It's just going to be rough to weather these repiratory viruses until then. I have to keep saying that over and over. I just finished a year and half of worrying about that damned trach, now the idea that I should have been worrying about his lungs instead (or in addition) makes me a little panicky.

He is very anti-nasal cannula at the moment. I don't blame him. He spent much of his very early life with one, and then had one after the reconstruction. I know that wasn't a fun time for him. So, of course, he associates the thing with yuckiness. However, breathing is good. We all like breathing. And getting a 2-year-old to understand that these prongs up your snotty nose will help you feel better is a bit of a feat. We're going to try a new tactic tonight (oxygen mask around his neck blowing shit tons of oxygen up into his face) and see if he likes that better.

How long will he need Os with these illnesses? I don't know. We've been lucky so far that he hasn't needed any. He didn't even need any the last time or two when he had the trach and was sick. I thought we were done with oxygen, that we just had it around for emergencies. Is this an emergency? No. Not yet, anyway. But it is a huge bummer. It's making me impatient and cranky and difficult to be around. Not an awesome way to bring in the new year and for that, I'm sorry. I need to be less stressed out when these things happen. Our pulmonologist told us it was likely he'd need oxygen when he got sick, but our pediatrician was more hopeful. So even though it's not a surprise, it's still disappointing. I wanted the trach to be gone, oxygen needs to be gone, all medical fragility to be gone. BE GONE. But it's not and I knew that it wouldn't be, so I should chill out.

My plan for meeting the new year with a relaxed, hopeful attitude has not yet been completely thwarted but only because I'm cantankerous and stubborn.

You hear that, 2011? I AM STUBBORN. SO STOP SUCKING. And, also, if you help Ike get off the supplemental oxygen in the next day or so, I'll be your best friend. We can laugh and hold hands and run through meadows together. I'll braid your hair, 2011, and you can ask me M.A.S.H. questions about which boys I like and what job I want. It will be awesome fun times. So help a girl out, OK? Don't make me punch you in your soft parts.