The blog lives

Contrary to my lonely heart proclamation in November that we'd do better with the blog, we clearly failed. But it's a new year, a time for grand proclamations and terrific intentions. Hey, anything is possible.

The holidays were lovely as always. Hope survived a nasty one-two punch of seasonal maladies shortly before Christmas. First, she caught a virulent stomach flu that made the rounds of Mo's family faster than the Japanese Bullet Train pulling into Osaka. This holiday will be remembered in the family annals as "Oh Yeah, That Time Everyone Was Barfing."

We feared Hope would have to spend Christmas in the hospital. She lost nearly 2 pounds through dehydration, which is the equivalent of about 20 pounds for a 15-pounder, and generally had the temperament of a damp dish towel. She did spend about three hours in the ER on Christmas Eve Eve, but perked up with the nourishing drops of IV fluid and we were discharged.

But her bout with the Ralph Macchios was only half the problem.

The clues, as they are wont to do, emerged gradually. No. 1: Hope screamed for four hours straight two nights in a row. No. 2: She would only sleep in the darkest, coldest part of the house. No. 3: She liked standing in front of the freezer. No. 4: Her eye began to cake.

Naturally, I read the signs, used my advanced powers of deduction and solved the caper: I think she's hungry. Her wails are those of a famished child confronted with a cruel paradox: She wants to eat, but cannot, because she has the John O'Hurleys.

Fortunately, I'm married to someone who may have married a lummox, but isn't one herself. Mo took Hope to the eye doctor. She had a corneal ulcer. Those are bad. They are formed when an abrasion to the cornea becomes infected. Somehow, Hope must've scratched her eye. Untreated, they can cause permanent loss of sight. If nothing else, we feared Hope might have to take a cue from Jack Sparrow and wear an eyepatch for Christmas.

But doubly fortunate, we caught it in time and, after about a week, the nasty milky spot in her iris has disappeared.

We missed most of the local festivities, quarantining Hope, but she rebounded in time to fly with us to Connecticut for Round Two of the Yuletide Hootenanny: Seven days with my family. Hope regained her weight and her spirits. We ate. We played too many not nearly enough games of Monopoly. We hit all sorts of touristy, geeky yet thoroughly entertaining historical sites in Hartford (who knew?) and generally had a merry, merry time.

Too merry to document, in fact, but not too merry to steal a video from my dear ol' Mom documenting Hope's continued efforts to walk. She's still got a ways to go, but she finds it all tremendously entertaining. And so do we.

Bachelor days

Globe-trotting Hope is at it again, flying to San Diego early this morning with Mom and her Aunt Annie for five days with Aunt Molly -- or as I call her, Dirtbag. Lulu and I are holding down the fort, raking leaves, ripping apart the bathroom, eating frozen pizzas and generally having unsatisfying, one-sided conversations.

It's been about 13 hours and I already miss my ladies. It's terribly lame, but the cycle repeats itself: Count the days until sweet bachelor freedom; feel sad for at the airport, sing a song of emancipation and return home, look around, realize it's awfully quiet and begin to re-shingle the roof. If this keeps up, I may have the foundation of the house up on jacks tomorrow.

I probably sound like a dullard, but Hope has been even more of a joy lately. If something isn't bothering her -- and she lets us know when it is -- she's one happy kid. It's a cliche, but that's all we can ask. And her joy is infectious. It's hard to be in a bad mood around Hope.

Mo always dogs me for writing long and skimping on facts, so here are some:

To our surprise, Hope has done well with her new pink spectacles. She's much more engaged and only whips them off when something is bothering her or feeling neglected.

Hope took to a fancy, schmancy new gait trainer the Intermediate School District let us borrow. It had a long handle so we could help her steer without breaking our backs, like her current loaner. She made repeated circuits and giggled all the way, like her heifer won top prize at the county fair. That's the good news. The bad news is we had it for four days on loan to see if she liked it before ordering it through supplemental insurance. That could take three months. So it's back to the low-tech red walker and more Ben Gay for our backs.

Hot to trot

Classic good news/bad news this week. Since everyone loves the good news, that's where we start: Hope had a whiz-bang, woowie-kazowie, tip-your-waiters-and-waitresses 50 percent Super Bowl, and not just because she won two squares and $10 in the pool.

It was after halftime. The commercials were blah as ever. We had bellies full of pig-in-a-blanket mini weenies and were looking for kicks. So was Hope. Literally. Laying on her back on a blanket, Hope began her windup: She flapped her warms, shook, shimmied, twisted, grunted and melodically kicked her leg four times on the blanket like she was cajoling a reluctant motorcycle.

Hope got the rhythm. The momentum followed. Like an uncorked, windup dervish, she heaved. Umph. One leg over. Hunka-hunka-oomph. Two legs over and presto! She was on her belly. We cheered like we cared who won the game. We returned her to her back, watched as she began her signature windup: Kicking her right foot four times, allowing the mojo to flow and -- thwump -- rolled over again.

She did it three times that night. Each time, the cheers grew louder. After 15 months and creeping ever-so-close, Hope had finally -- consciously -- rolled from her stomach to her back. We add the caveat because she's been rolling over in her sleep for weeks. But we figure that doesn't count for the Guinness Book unless she really wants it.

We're thrilled, of course, so much so that the bad news seems minor.

Our wood-paneled-dwelling, septuagenarian optometrist, Dr. Speakupsonny, reminded Mo that Hope will need glasses in the next six months or so. Since Hope already wears hearing aids, he thinks she should wear something durable. Something unobtrusive. Something plastic and multicolored.

They are known as the Mira Flex. They are billed as "flexible and safe." Here are beautiful models wearing the glasses whose instructions include tips such as "warm and shape according to need, compensate by overfolding. Make sure the temple is cool before placing on child's face."

Mo is mortified, insulted and practically speechless. One week later, she's still steamed.

"There's no way ... and I mean no way ... I'm putting our baby in Mr. Potato Head glasses."

Upon further review, I'm not sure she's that far off.











(Note: Dad is a dum-dum. An earlier version of this post said Hope had rolled from belly to back, which she's done for month for months. It was the back to the belly that made our zoom-zoom go boomity-boom)

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.

A few notes about collaboration

We have a few arguments in this house about blog entries. I write 'em. Mo edits 'em. Initially, Mo felt jealous, claiming I spent more time with the blog than her. She dropped that when I started spending more time with her.

Lately, the friction stems from our philosophical differences as journalists. I want to tell rip-roaring yarns that entertain, enlighten, provoke and even tickle the heart. She keeps insisting they be factually accurate.

Whatever, lady.

Honestly, we walk a tight line. Our first priority is protecting Hope. There are some scary possibilities with CdLS that don't need to be announced and prejudice anyone's view of her. But we also have an opportunity to spread the word about a syndrome most don't know exist.

So there are many chats about how much to say, when and how. I usually err toward letting it rip, brutal honesty and endless chin scratching that paints me in the best possible light. Mo prefers a judicious, "We went to the doctor today and here is what happened" approach. At times, the chasm proved so great that I threatened to (a) Start a secret, alternative blog using pseudonyms and a made-up condition where I could finally be free to vent inner demons and philosophize (b) Kick her off the blog about her daughter or (c) Withhold kisses until she is a nicer editor who lets me write what I want.

Her response: "Whatever, loser."

That's my lady!

We've bandied about compromises. Mo doesn't want to alternate entries. I suggested we approach the blog like an annotated study Bible: I'd set down divine prose and she'd make persnickety notes in adjoining, red-font paragraphs to offer her claim to the "truth."

Until then, we're stuck as collaborators, in more ways than one and must make it work. In that spirit, here's the latest, in prose to make Mo proud.

Monday, Mo took Hope to the eye doctor for a routine examination. Hope is doing well. She can see well. She does not have cataracts. Her eyes were dilated. She tracks motion well. The doctor is a nice old man. He gave tips on how to massage the balls of Hope's eyes to ease what appears to be a blockage in her tear ducts causing excess eye boogers. We will seem him again in a few months, but so far, so good!

Last week, Hope began occupational therapy. She will have occupational or physical therapy every Wednesday at our house and, when she is big enough, will go to group therapy Thursdays with other tots. It is part of Michigan's Early On intervention effort for special-needs children.

The therapists work on such things as "tummy time," neck control, feeding and eventually crawling and arm control. One of the exercises involves a helium balloon. You put it near her to encourage eye tracking and playing with her arms. She had a jolly good time Monday night with a Valentine's Day balloon. We held her, she giggled and followed as it gently bobbed and swayed. She reached for it repeatedly, but didn't quite bat it with her hands. Oh well. A good time was had by all. We also worked on an exercise with a rubber pilates ball. She lays on it with her tummy and we gently roll her. That encourages neck control. She did a good job.

Our sleep study last week was postponed until Feb. 19 from Friday. Other than therapy on Wednesday, it is a quiet week.

Over and out.