Tuesday, June 24, 2008

Hey, it's junk guy!

Mo calls it the fruit cellar. I call it the place cats hide for days and do God knows what. Either way, it's that scary room that everyone has where junk goes to be forgotten and exotic strains of paramecium fester.

We're trying to become better at tackling lingering projects, so I spent Saturday afternoon sorting and detoxifying. Good thing. In addition to 18 cans of used paint, a make-it-at-home beer kit and several empty shoe boxes, we were reunited with the following basics for every responsible household.

Pet costume, left over from a regrettable, "Aren't we so cute?" decision to dress one cat as an angel, another as a devil for a Christmas card that resolved any doubts about loserdom.

Our backup fondue set. We have two. You never know when you need to call in reinforcements to melt cheese. Actually, we have never made fondue. But it looks nice next to the Magic Bullet, sake set, espresso maker, juicer, Showtime Rotisserie Grill and twin George Foreman Grills.

Fake chest hair. Just in case.

There's no joke here. This thing is awesome.

We're off Wednesday to the CdLS National Conference in Chicago. We're eager for the opportunity to meet other families with the syndrome, talk to doctors and further our education. But we're slightly nervous as well. I've never seen another child with the syndrome; Mo has met one.

We're not quite sure what to expect. I'm sure it'll give us a better understanding of what Hope faces, which is both good and a bit scary. Knowledge is always good, but ignorance is sometimes bliss as well. I'm sure we'll laugh, cry, learn a lot and be better for it.

Sunday, June 22, 2008


Milestones abound.

Hope. who is a few weeks shy of 8 months, finally is the size of an average newborn: 7 1/2 pounds, plus a few extra ounces for bragging rights. We're still hoping to hit 10 lbs. by one year, which would continue the 2 oz. per week weight gain she's maintained since she was in utero.

So far, Spitenup and company are happy with her progress. Many CdLS kids don't really pack on the pounds until they have surgery to install feeding tubes -- and even then it's slow sledding -- but since she's held firm to her growth curve, that possibility hasn't arisen.

The bad news: She may never be tall enough to ride the Millennium Force at Cedar Point. The good: We can probably sneak her into the movies with a children's ticket for a few extra years.

Last week, the blog passed its 10,000 hit since I began keeping track in December. Yes, I am a loser. Thanks to all who've peeked in from 35 nations and 46 states. Thanks for nothing, North and South Dakota. Seriously, we appreciate all the support, are happy we've connected to CdLS families and are humbled so many seem to care.

Friday, June 20, 2008

Mo Mo Momism

The words left Mo's lips. There's no turning back. She's irrevocably a mom.

"Be careful. I don't want her to poke an eye out."

I had lazily just handed Hope an impromptu toy: A used grape Popsicle stick, straight from my mouth. She dug it. Mo didn't.

It was a genuine Uh-Oh-She-Sounds-Just-Like-My-Mom moment. In no time flat, I'm sure, Mo is gonna break out the tried and true: "I don't care if everyone else is doing it. I'm only saying this because I care about you. Put on a sweater. Waste not, want not. And look at me when I'm talking to you."

Thursday, June 19, 2008

... and livin' is easy

The first sign: Our laundry room has become the killing fields for small red bugs that come to smell my socks and die. Mo provides daily war dispatches, a la Christiane Amanpour: "I found five more dead ones today! They're getting closer to the food rack and the Clif Bars!"

The second sign: The calender. It's oddly full of stuff like parties, baseball games, family visits and vacations and conspicuously devoid of doctors appointments.

Yep. It's summer. We're proud and a bit wistful to report that Hope has passed her first year of special education. Cue the '70s stoner movie soundtrack; call the AM radio station 15 times and demand to hear "School's Out" again; toss all the toilet paper out the window: No more classes until September, baby!

For the past few months, Hope had some type of therapy every Tuesday, Wednesday and Thursday. Tuesday was group therapy for hearing impaired infants. Wednesday was at-home occupational or physical therapy. Thursday it was more group, this time for babies with special needs.

All were provided by the Intermediate School District. We're grateful for all of them. We were lucky to have some wonderful therapists who gave us great advice, encouragement and reinforcement. All seemed to really care for Hope, so we couldn't ask for much more.

We've debated continuning with private therapy over the summer. At some point, it's a conversation most parents of special-needs kids have. The ISD therapy typically lasts no more than an hour.

Our conclusion: Hey man, it's summer. Don't bogart the buzz. Crack another cold one and flip that Pink Floyd record.

Actually, we did some research, asked some questions and were advised by therapists to keep up with the exercises ourselves and enjoy the break. In taskmaster Mo's case, that means working Hopesy daily like a Red Army drill sergeant, until our little girl is spent ...

Sunday, June 15, 2008

Fathers Day

Sleep in. Kiss the girls. Slurp coffee. Play with Hope. Take Lulu for a bike ride. Don't die. Read enough of the New York Times to feel smug for the day. Eat blueberry pancakes. Play with Hopesy. Get presents. Like 'em. Read card. Stand in awe that Hope has become a poetry prodigy.

Read Hope one of my presents, my favorite book as a child, "How Tom Beat Captain Najork and His Hired Sportsmen." Go back to bed.

Feed Hope strange brown mush with spoon. Consider it a triumph that 20 percent goes in her mouth. Relax. Lay on couch. Put on funny hat. Take it off. Kiss the girls. Eat leftover steak, cheese and pickles.

Go to zoo. Push Hope. Miss the chimpanzees. Think that anteaters sure look funny. Sit on grass. Play with Hope. That's the best part. Go home. Eat coffee ice cream. Play Frisbee with dog.
Call my Dad. Get more presents. Eat more pancakes for dinner.

Count blessings on near-perfect Fathers Day.

Wednesday, June 11, 2008

Seeing hints

Apparently, our girl's been sending us unsubtle hints.

Hope has a new obsession. Dice-K is yesterday's news. Ceiling fans are passe. Eyeglasses are all the rage. Hope leans over, snatches them off Mo's face and obsessively fiddles and diddles. More! More! Four times is never enough. She digs it so that Mo has had to teach Hope a new word to stop: No.

We're not wild about it, but Hope may soon be able to play with her own glasses.

A routine eye appointment diagnosed Hope as very near-sighted. The opthamologist thinks Hope may need glasses in a few months, when she turns 1. We were floored. Vision problems are common with CdLS kids, but Hope's focus on toys -- and earlier tests -- fooled us.

The toughest news is the kind you don't expect. Glasses aren't the end of the world, but the thought of our little girl in them at such a young age made us sad. Logistically, we're not sure how she could even wear glasses and hearing aides at the same time.

It could be worse: Tests showed equally bad vision in both eyes. That means she's not favoring one eye over the other. If she was, vision in the weak eye could continue to deteriorate.

We have some time to think about it, because we're not due back for five months. She'll be re-tested before we proceed on anything. So we move forward, shove the worries into the recesses of our minds and hope that form holds true and issues with our girl aren't as bad as they initially seem.

Thursday, June 5, 2008

Big news

Hope can finally fit into the elaborate torture device known as the child Snugli.

Wednesday, June 4, 2008

Cutie and the killer

The morning sun shone. Hope cooed a happy coo. Death loomed.

Half-asleep, I cradled Hope. She batted a toy. I sipped coffee and absent-mindedly opened the back door for Lulu. In about 1 1/2 seconds, my mind raced from domestic sloth to primal fear:

Boy, Lulu seems awfully peppy. Look at that tail wag and wag. She's a good doggie. Ha, ha. She runs funny. Hey, she's darting after a squirrel. It's nice she has interests. Go get 'em Lulu! Wow, that squirrel is slow. This is gonna be close. Uh oh. Too close. What's the matter with that squirrel? Must warn squirrel. How do you warn a squirrel? Form words with lips. Yell something.


It was supposed to sound alarming. Instead, I sounded like Jenny from "Forrest Gump."

Too late. Dead squirrel in the backyard. Baby in my arms. Dog acquiring crazed look, batting squirrel carcass and biting the tail in a manner I hoped was more Lennie from "Of Mice and Men" than stone-cold Cujo.

It was Lulu's second known kill. The first came last summer. Rabbits had descended on our neighborhood that spring, soon after we learned Mo was pregnant. They were everywhere.

"This is a good omen," I mused. "Rabbits are a sign of fertility. Everything's going to be OK."

The morning before of one of our nail-biting ultrasounds and echocardiograms, Lulu got one. It was twitching. She was lurking above it, giddy and proud. Mo screamed. I spun.

"There's no such things as signs. But, um, if there were, this would be a good one. Everyone knows rabbits are bad luck."

For the next few days, it's tough to view her the same. Rationally, you know it's instinct at work and dogs have struck an evolutionary bargain to be our best pals. But holding a 7 1/2-lb. girl, watching a 100-lb. beast lick her muzzle while lurching over squirrel guts, fears mount:

When Lulu licks Hope's head is she softening her up? Maybe when the dog jumps onto the fence and barks at the kidney-failure dog next door who wears a sweater, she's not saying "Say, neighbor what's going on?" Perhaps we should rethink our fun game of pointing at our cats and yelling "Sic 'em, Lulu!"

We're waiting for Lulu to become fiercely protective of Hope. So far, it's mild curiosity and low-grade jealousy. We try to further the bond. Hope pets Lulu, who doesn't seem to mind. We lavish attention, encourage them to interact, but worry that Lulu will step on Hope. We say things like "Lulu, this is Hope. Protect her." If she understood English, it would be that easy.

Mo insisted I wash out Lulu's mouth and paws before she returned inside. The killer didn't appreciate the indignity, but was curled up near Hope's bassinette 15 minutes later.

Fun times

I think there was an issue with that last link.