Oscar in Funky Town

Oscar has discovered the thrill of '80s one-hit wonders Lipps Inc. Can you blame the kid?

Birthday and all that jazz

Big stuff. Hope turned three. She's pulling herself to a stand — as we learned last weekend when we came in to her room and found her cruising in her crib — and Oscar is nearly sitting. More on that later.

And now, an Oscar video

Oscar is a cheap smile and expensive laugh. The kid spends two-thirds of the day smiling, and doesn't give much of a hoot about what.

Lamps? Awesome. Ladies in the super market? Hey there, momma. Ceiling fans? Now, you're talking. A poster frame? C'est magnifique.

It's fun to see. But we've noticed lately that to get O really chuckling takes more than simply walking into the room. Sure, that'll generate a grin. But for a full-on, tell me another one-liner Henny Youngman, that takes some work.

Which is why we don't have a lot of video of that yet. But we do have video of him smiling and chatting a lot, so that's what we're posting.

Fundraising, surgery and a helmet

A gigantic thank you to friends and family near and far for another successful Walk for Will and Hope. This year, we drew about 75-80 walkers for a picture-perfect 2-mile stroll. The weather was unseasonably warm. The leaves were magnificent. The company was terrific. Hope and Oscar were in fine spirits. We really couldn't have asked for much more.

We're happy to report we raised another $4,500 for the Cornelia de Lange Syndrome Foundation, pushing our two-year total past $10,000. It means so much to us that we could do this to honor Hope and Will, who would have turned 6 five days after the walk. It's hard to believe it's been that long. We miss you, pal.

It's also hard to believe it's been 18 days since the walk. A whole lot has happened since then. About five days after the walk -- two days after we put my parents on a plane -- Hope had her supraglottoplasty surgery. That's the surgery to correct her laryngomalacia, a floppiness of her airway that made her seem like she was wheezing or snoring when she breathed.

Laryngomalacia is fairly common and benign among newborns. Most outgrow it in about 12-24 months. But most aren't nearly 3 and still about 16 pounds. We worried Hope's breathing was compromised by the floppiness of her airway and that she had a tougher time getting over colds because of it.

The surgery involved cutting floppy skin from her windpipe that caused the wheezing. It required anesthesia and putting an oxygen tube down her throat during the procedure. So naturally, we were freaked out. We were doubly freaked when we decided on the eve of surgery to read medical studies about what could go wrong. Never a great idea.

Hope was a champ. She left the hospital that afternoon, was a total pill that night, but bounced back to her old goofy, sweet self the next day. Her breathing improved immediately. It's odd not to be able to hear Hope from 50 paces anymore, but wonderful.

Both Oscar and Hope are doing great. We realize how infrequently we've updated the blog when we look back and realize what we've neglected to mention.

Hope started school in September. I drop her off about 9 and Mo picks her up about 3. We were dreading it. But Hope seems to be doing great. In a little more than a month, she's begun potty training and is weaning herself off bottles. It's five days a week and Hope is usually pretty exhausted -- no naps for little girls -- but she's been really happy since she started.

Oscar got a cranial helmet to correct a flat spot on the back of his head about three days before the walk. We were bummed, of course, that he'll need to wear it 23+ hours a day for the next 2-4 months. He may look like Spaceman Spiff, but he is utterly unbothered. His attitude seems to be: Hey dudes! I'm wearin' a helmet!

It's ironic, after nearly three years of fielding questions about Hope's size or her glasses, to answer questions about Oscar's helmet. The other day, in the Post Office, a clerk asked Mo if it was a fashion accessory. A few weeks ago, a girl at a toy store pointed at Oscar and screamed: Look! A baby in a helmet! Her embarrassed mother found us later and tripped over herself apologizing. I told my daughter, some kids are just born sick. We don't make fun of them.

Lordy, lordy, lady. Quit while you're behind.

There's a whole lot more, but not enough time. We're busy making cupcakes and preparing for Hope's third birthday on Halloween. She's a fairy princess. Oscar is a monkey. We think they look pretty cute. But neither seems thrilled by the prospect.

Our son, the caveman

Our son has learned a new skill. Don't blame Dad.

Hope makes her move

Hope let go.

Saturday, unable to find her beloved Winnie the Pooh push cart or inferior-but-will-do-in-a-pinch lawnmower one, Hope stood against a wall, looked around, thought Why not? and walked.

It wasn't one of those Oh, I'll take a few brave steps and grab ahold of something sturdy walks, either. This was Lewis and Clark, Vasco de Gama and Neil Armstrong embarking on brave new world conquests.

Hope planted her flag in her bedroom, surveyed the riches, proceeded to the hallway and declared our bedroom part of her sovereign kingdom. It wasn't a one-and-done dilettantish affair either. Once Hope realized she could walk, she's become Speed Racer, moseying about the house in a royal quest quest to knock stuff over, inspect coasters, open and close cabinets and see what she can throw in the toilet next.

We're ecstatic, of course. It's been such a long time coming. She's been inching this way for some time since she began cruising on Memorial Day Weekend in 2009. Slowly but surely, she gained more confidence and strength and put the pieces together.

We thought she was ready for a breakthrough in spring and set the end of summer as a goal to get her walking. She suffered a setback. We weren't sure if it was the introduction of a baby brother or molars or outgrowing her orthodics, but her confidence sagged. So did her progress.

We were bummed. But Hope gets her determination from Mom and procrastination from Dad and pulled it out with two days to spare.

There were days, early on, when we weren't sure this day would come. Before Hope could sit, when she was a bit of a wiggly blob, her first physical therapist, Shirley, told Mo: "She's going to be a mover. I can see her running one day."

Mo cried. The affirmation came just when we needed it and carried us through some slow months. Hope's not quite running just yet. But she will.

We're walking again

Last year, we fulfilled a promise to Will and honored his memory with the Walk for Will and Hope, a 2-mile leisurely trek to raise money for the Cornelia de Lange Syndrome Foundation. We didn't know what to expect, fumbled our way through and were knocked over by the reception, raising more than $6,000 for the foundation.

This year, the pressure is on. Between getting ready for Hope to start school next week (Lord almighty) a host of doctors' appointments, potential surgery to address Hope's tracheomalacia and figuring out when Oscar ever sleeps, we're sponsoring the walk again. It's at 9 a.m. Oct. 10 at Stony Creek Metropark in Shelby Township. Same Bat Time and Channel as last year.

More appropriately, Mo is putting it on again. She's the captain, quartermaster and ringleader. I'm the dork who yells into the bullhorn.

Like last year, we're not sure what to expect. Times are tough. We're reluctant to hit people up again after giving so generously last year. It's a long drive.

But we've always been surprised by folks' generosity. And, like last year, we know we can count on support from hither and yon. Unlike last year, we're making it easier for you hither and yonners.

Partnering with the foundation, we've set up a site through First Giving to donate directly to the CdLS Foundation in honor of Will and Hope. It's www.firstgiving.com/walkforwillandhope. We're also putting a link directly on the blog near Hope's photo. If you're more comfortable, you can donate directly to the foundation. The address is on that site.

Of course, we'd prefer to see folks at the walk. Like last year, we'll be doughnuts. New this year is a special guest appearance all the way from Bangor, Maine, of my parents. Some kid named Oscar will be there as well.

As will Hope, who if all goes well, will actually be walking part of the walk. She's getting very close and very determined. If not, she'll sleep through it like she did last year. Either way, it should be a hootenany.

Hope to see you there. And thanks for enduring the sales pitch.

Sibs

A lot of folks ask if Hope enjoys being a big sister. We think she might.

The first day back from the hospital, I had Oscar in my lap. Hope scampered up and reached toward Oscar. My heart began to melt. She reached farther and farther toward his head. "Get the camera, Mo," I whispered, certain that Hope was responding to her biological wiring to pat the head of her little brother.

Hope inched farther still across my knee. My heart thump-a-lumped. She got closer still. My mind raced with ooey-gooey thoughts, daydreaming in fast-forward that my life from now on would be filled with sticky-sweet confectionary moments like these.

Hope's little hand almost snatched Oscar's pacifier from his mouth before I got wise.

It was a lot like that for the first few weeks. We tried to force bonding moments. Hope seemed vaguely interested that we brought home a new receptacle for binkies and bottles. She seemed to think Oscar was OK but no more so than a wooden peg or her necklace of milk jug caps.

Since then, Hope is far more cognizant of the 12-pound kid than the 90-pound dog she's spent a lifetime ignoring. When she thinks we're paying too much attention to Ozzie, Hope grabs our knees, sticks her head in our face and whines. She had a rough couple weeks with frequent crying spells that could have been attributable to sibling rivalry, the arrival of her last two molars or something else.

But she's warming to him as well. She seems to like Oscar, but quite as much as her cat, Jack. Hope pats his head. She looks at him lovingly. She gets a big smile whenever he wails in agony. We like to think it's a smile of "I've got your back, kid" rather than one of sheer sadism, but you never know.

Chatty Oscar

No, we didn't name him after Oscar Wilde. But the kid is quite the raconteur.

Two words...

Eating Machine!

The O-Man has gained two and a half pounds since his birth five weeks ago and continues to astound Joel and me with the sheer volume of milk he can put away. He's only five weeks old and he already drinks about DOUBLE what Hope drinks in one day. Granted, Hope also eats baby food and digests things slower than the typical kid but still. The little pork chop may not look like Mama but he's got her appetite. Wow.

Many people have asked how Hope is adjusting to her little brother. Aside from trying to steal Oscar's binky and bottle and being a little clingy with mom, she's done remarkably well. She even gave him a kiss -- after much prompting -- on the head the other day. But we'll really see what she thinks when Oscar is about 6-8 months old and more mobile and going after her toys. That may be a different story.

All in all, things are incredibly chaotic here but really good. Joel's awesome mom, Anita, helped us for two weeks after Oscar was born and my cool sister, Molly, came for a week after that. They were both a tremendous help and got to spend a ton of quality time with both Hope and Oscar.

In other big news, Hope graduated from the Macomb Infant Preschool Program last week with a special party that included games and train rides. I managed to keep my postpartum hormones in check but I could've easily bawled my eyes out saying goodbye to all of Hope's therapists. What amazing people. You know your kid is in good hands when the staff doesn't just teach your child from week to week like it's a job but really loves her. And in helping Hope, they really helped make us better parents too. We're going to miss them all. Thanks again, Maryann, Cheryl, Nelson, Carmella and Kathy.

Meet Oscar Bryce Kurth

Baby Boy

Baby Boy is here. Still no name yet, but everything else is hunky dory. He came at 1:08 at 6 lbs., 1 oz and 19 1/2 inches. Red hair, long arms, long legs and oh-so-fine. Big sister met him about 5 wearing her special T shirt and seemed fairly curious. Then her toys beckoned.

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He arrives...

TOMORROW! We'll keep you all posted.

Thanks so much all the love and support! You guys rock.

Bittersweet

As many of you know, Joel and I are journalists in the Detroit area. Last night, I covered a small election in some communities in and around Detroit -- little stuff like millage proposals, school district bonds, and the like. When the results came in from one city counting on a millage proposal (tax increase) to help them save their services as they struggle with major money problems -- it passed -- an elected official told me the results were bittersweet. It didn't solve their budget worries but it helped.

The word struck me: bittersweet. That's exactly how I felt the moment I found out I was expecting a boy. It felt bittersweet -- to lose a child, a baby boy, and now to be expecting another. Bittersweet.

As I approach the end of this pregnancy with all its aches, pains, and endless bathroom trips, I'm getting more and more anxious to meet this little person. I want to meet the little boy who likes "Bohemian Rhapsody" when I put headphones on my belly, who kicks the minute I pick up his sister, whose foot I've seen graze from one side to the other of my stomach, who I've dreamed of.

I can't wait to hear his voice. I never heard Will cry aloud (because of the ventilator). Ever. And while we heard Hope cry the tiniest of cries in the delivery room, Joel and I both long to hear a huge, throaty cry of "Where the heck am I?!???? Put me back!"

I've been wondering and worrying if this baby will need to go to the NICU like Will and Hope. I'm keeping my fingers crossed that he'll be big enough and his lungs mature enough at 37 weeks not to need the NICU. But I'm preparing myself just in case.

So that's where we are -- 13 days away from my c-section. I'm so excited to see my little boy, to study his face, kiss his cheeks, and smell his hair. And yet a part of me is sad too, sad for the little boy whose time on this earth was far too brief, missing him like always. Bittersweet.

P.S. I apologize for the heavy post. Blame the hormones.

Walking tall

One day, about a year ago, Hope decided to cruise. Seemingly out of nowhere, she put one hand over another, moved her feet and scampered across an ottoman.

One day, a few weeks ago, Hope realized she didn't need the ottoman. She let go of her push cart and started walking excitedly to Mo.

Since then, her confidence is increasing and she's taking more steps on her own. At therapy this week, Hope walked about a dozen or more steps. Now, she's walking a bit more every day, even if she still resembles a drunken sailor.

We're awfully proud.

Easter passages

As some who've followed our story for a while know, we like to torture Hope on Easter.

The first year, Mo put her in an Easter basket. She didn't like it much.

Last year, we put her in again. It didn't go so well, either.

This year, we didn't bother with the big girl. Everyone is a little bit happier because of that.

The swimmer

Hope loves the water. We love watching Hope in the water. It's a pretty good arrangement that works well for all parties.

Caught in the act

Hope has taken to her crib. When she was much smaller, she hated being put to sleep. It was a true endurance test. We'd read to her, fill her with Pediasure, rock her 'til we nearly dropped and pray for the best. She usually didn't fall for it. The moment we put her in the crib, her back would stiffen, she'd begin to wail and we'd have to start all over.

My routine was to count backwards from 100 once I believed she'd succumbed. I needed to move very slowly from the chair to her crib, gently transfer her from one arm to the other and place her down like a princess awaiting her pea.

It rarely worked. We'd be mid-tiptoe, the crying would start and dreams of a quiet night enjoying "Intervention" reruns would be quashed again. Likewise, when Hope awoke, the entire house knew it.

Eventually, Big Mo made a declaration: No more, she decreed. We're not going to spoil her by rocking her to sleep every night. And thus it was so. Sort of.

Now, I usually have to count to only 30, but Hope doesn't mind her crib. In fact, it's become just another place in the house to play. We'll put her to bed, think she's asleep, and then 20 minutes later, the cooing and giggling comes over the monitor. It begins quietly, a tee hee there or a wee there, but often gives way to full-blown, one-hour laugh riots at the wonder that is sheets and a bed. She eventually gets to sleep. We think.

Long story short, we often catch her awake far on the other side of the crib, in the ghetto of stuffed animals. Her arms will be wrapped around a stuffed Elmo, her beloved cloth rings or the god-awful "Ziggy as Frankenstein" that I won at the crane game to make amends for thoughtlessly discarding Mo's beloved "Ziggy" address labels that came in the mail.

Thursday, we caught her in the act, two hands clutching a ring, a stuffed mallard propping her up and her upper torso surrounded by her stuffed animal pals. She had a look like, Huh? Bug off, buster. Can't you see I'm busy here with Ziggy?

We know we're not winning any plaudits from Dr. Spock with the stuffed-animal in the crib arrangement. We'll probably have to move them now. But it is pretty cute. And who doesn't like Ziggy?

Sitting pretty

It's a big weekend for Hopesy. After two years of adjusting to her car seat, she's now quite comfortable in it. For months, we needed to time our trips to the minute so we could avoid putting her in the seat, lest she burst into tears.

Now, it's her mobile entertainment capsule, like a Lazy Boy with cup holders and remote-control holder for the toddler set. Two sets of rings dangle from the carrying handle. Hope meticulously takes them off one by one. She has her binky on one side and a bottle on another. It's a comfortable arrangement.

And like any good parents, when we see comfort, we set out to eradicate it. Hope may be a few pounds shy still, but we are transitioning her to a Big Girl front-facing car seat this weekend. We figure we'd better make the move now. Little Brother is fast incubating in Mo's womb and will soon need to learn the ways of pulling refrigerator magnets from Big Sister. Unnamed Baby Boy is due May 12.

So we went shopping last week for a new seat to see what Hope thinks. If the test run is any indication, we suspect she'll do just fine.

What's this thing?

We think she likes it.

Oh yeah, this'll work. We think.

Funny girl

Say this about Hope: She has no problems amusing herself.

The girl finds a lot of stuff funny. Her rings? Hilarious. Mo's big pregnant belly? As good as a pie in the face of a clown and more fun to grab and pat. Her bottle? Mamma Mia. Hours of entertainment.

Part of it is hereditary, we're sure. We like to laugh. Mo laughed so hard at a rerun of "King of Queens" on a long redeye flight once that I woke up thinking a deranged person was on the plane. Mo's mother should rent her services to fledgling comedians.

Some of it probably is cognitive issues for Hope, too. But she's so infectious, it often doesn't matter. Hope laughs at her walker. She breaks into giggles pounding blocks. The back of the couch has her in stitches.

It could be punchiness or another highly clinical state known as "toddler-dom," but Hope for long stretches at a time can border on giggling hysteria. Everything is hilarious! Mom has elbows? Oh my God, I can't stand it! Dad's wearing a striped shirt! Stop! Stop! You're killing me! The cat walked by. No more! No more. I'm a lady!

Hope's newest source of hilarity is bending over. She has discovered that when she drops stuff, she can move bend one knee and reach with her arms to try to retrieve it. Funny! She will lean over for 30 or more seconds and laugh and giggle away. Soon, she will realize her arms aren't long enough to reach her toy. She could bend both knees. But no, no. She is laughing too hard now. So she stays there, half-leaning and in complete hysterics.

This has persisted for about a week. At some point, Hope had a Eureka moment: I don't have to drop anything to bend over and it will still be awesome.

So she does. One minute, she will be cruising along, slavishly obeying the toy that commands her to "Touch the little bear ... and play with me." The next, she's half bent over, tee-hee-heeing at the marvelousness of arms, backs and the floor.

We'd be lying if we said it wasn't a little weird sometimes. But she pulls it off. And makes us smile.

Swinger

We took Hope to the swings on Sunday. She may not be much of a sledder yet, but that girl loves her swings.

Photo o' the day

Mo and Hope last weekend at a museum in Detroit.


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Hell on wheels

A few months ago, our friends, Joe and Sheila, gave Hope a hand-me-down push cart their daughter used. Apparently, she loved it so much they had to hide the evidence of their betrayal, sneaking the Winnie the Pooh-themed vehicle into the car while she was unaware, employing the stealth and foresight of high-school sophomores stashing a six-pack of Blatz in the woodshed for Homecoming.

Now we can see why. The cart has given Hope the freedom of a young go-getter's first moped. It took her a while to warm up to its charms and figure out how to maneuver it. But now she's hell on wheels, making the rounds of the house like a milk-man dropping off Half and Half to Aunt Ethel back in the day.

Until a few weeks ago, she would travel in straight lines and cry when she reached the wall. Now, she's figured out routes even more circuitous than Northwest pilots. She rounds corners with ease and aplomb, makes hairpin turns worth of Mario Andretti and generally terrorizes Mo's beloved but otherwise vile tabby, Jack. Lulu has already learned to give Hope a wide birth when she's in the cockpit of the Winnie the Pooh mobile.

Here's our girl in action. And thanks, Joe and Sheila. And sorry to their daughter. Hopefully, she can't read yet. But she is awfully precocious.

Busy Girl

For a toddler who can't walk yet, Hope is one busy little girl these days. She's got places to go and things to do.

She has to explore the kitchen -- and everywhere else, for that matter -- with her push cart.

Along the way, she has to stop at the refrigerator to rearrange the magnets and even sample a few:

Then it's off to the dishwasher to rearrange the cups (and sip out of a few; yes, they're dirty. And yes, I'm a bad mom. But she likes the cups!), bang the door to the garbage and bang whatever cupboard within reach:

Eventually, around noon, it's time for a nap. After 2-3 hours, it's time for more fun:

A new addition

Forgive me if I've been totally MIA when it comes to my blogging duties lately. I have pregnancy brain.

Yes, Hope will officially become a big sister this spring (note the big smile on her face above; she has no idea what's ahead). I'm five months along now and due in early June, though I'll likely have a C-section in mid-May because of two previous ones.

Now, some of you may be wondering why two people with a known genetic condition in the family would even CONSIDER having another child. As incredibly grateful as I am to be Hope's and Will's mom, I've always longed for a healthy child. And shortly after Hope was born, Joel and I learned that the possibility existed that we could -- through science.

Joel and I were able to do some very, very detailed genetic testing at the embryonic level before I even got pregnant. It's called Preimplantation Genetic Diagnosis. Basically, people way smarter than me -- scientists -- can build tests for families with known genetic conditions to test future pregnancies for that same condition. In an amazing coincidence, we went to a facility in our own backyard, Detroit, and a test was built using my DNA, Joel's, Hope's and Will's (which we banked before his death, hoping that we'd one day be able to have an official CdLS diagnosis). Using that test, we were able to test specifically for Cornelia de Lange Syndrome at the embryonic level. PGD, which has been around for about 13 years, is 97 percent accurate.

It's a lot to get your brain around. To do this testing, we had to go through in vitro fertilization. We went through our first round in September and got the amazing news a week later that I was pregnant. In vitro is not an easy process in and off itself. I gained so much empathy for people with fertility issues because it certainly isn't easy. It's physically, emotionally and financially challenging.

But the amazing news is this: About a week after Christmas, I had an amniocentesis. We had to send everything off to a special lab at the University of Chicago which is the only lab in the country (I think) that tests for the NIPBL gene mutation Hope has and Will had, which causes CdLS.

Our baby does NOT have the NIPBL mutation. I just cried when the genetic counselor called me. I had tried to prepare myself for every possibility. But to hear those words, I can't even describe my relief. For a couple days afterward, I jumped every time the phone rang because I kept worrying the genetic counselor was going to call back and say she got it wrong. It's been two weeks now and I don't think she's calling.

I realize that some people may disagree with our decision. Joel and I could've chosen adoption. But adoption has its own challenges and I just hope that those who don't agree with our approach withhold judgment until they've walked in our shoes. Again, I feel SO blessed to be Hope's and Will's mom. And yet, I've always wanted a healthy biological child -- a child who'll hopefully one day learn to read, play soccer and graduate from college.

I realize there are no guarantees. So for now, I just feel thankful. And I'm keeping my fingers crossed that this pregnancy continues uneventfully. All I'd like in the world is a boring pregnancy. Oh yeah -- and a healthy kid!

One last thing: We're having a BOY! As I said before, Hopesy has no idea what's in store for her. I can't wait.

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.