Friday, December 11, 2009

We heart Xmas



By some misfortunate fluke of scheduling, Hope's annual heart examinations always seem to fall near Christmas. And nothing pauses the Holly Jolly quite like anxiety over aortas.

True to form, Hope's annual checkup was Thursday. We switched doctors this year, transferring from the lovely cardiologist in the suburbs to a doctor at Children's Hospital of Detroit, which performs surgeries should they ever be necessary.

It was a long checkup, 2-hours plus, all told, and Hope performed like a champ, giggling at the EKG leads and fiddling with the echocardiogram as the docs checked out her ticker.

The good news, and it's great, is that Hope's issues are status quo. She has a bicuspid aortic valve, which means the valve that regulates blood flow from the heart into the aorta has two leaflets rather than three. She also has a slight jog in the curve of her aorta, which could be suggestive of a very mild coarctation or narrowing. That could present an issue down the road with blood getting to where it should, and worse case, one day lead to a stint to open it and keep things moving.

Or maybe not. So far, neither present a problem. Her blood pressure's great, the blood is flowing like a trucker on 5-hour energy drinks. As it was last year, these are just things we have to wait and watch as they develop. We see them again in a year.

Until then, it's back to the holly jolly stuff.

Monday, November 30, 2009

Good stuff

Hope is doing good stuff, feeding herself cheese and cereal puffs and beginning to take her first steps with a bit of encouragement. But as you can see, it's a work in progress.
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Tuesday, November 17, 2009

San Diego fun

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They're back safe, sound and happy. Good times in San Diego with Mo's sissies.

Saturday, November 7, 2009

Bachelor days

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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.

  • We're switching cardiologists. We had to cancel Hope's annual check-up to monitor her narrow aorta because we were Up North. We like our cardiologist a lot, but are thinking about switching HMO networks to a children's hospital.
  • I'm going to try to be better with the blog. It's gotten away from us for a while, but I'm feeling recharged for the moment.

  • Thursday, November 5, 2009

    A new do at two

    Like others with CdLS, Hope has hair issues. Sure, her locks are adorable, but they don't always cooperate. For months last year, Hope sported a faux-hawk worthy of Glenn Danzig or other punkie poos. She gets her color from her mother's side and her fly-away, instant hat head from mine.


    Lately, we've tried to solve some of the issues with hair bows. But Hope likes to eat those. We've tried bands, pigtails and jaunty caps. Eventually, she tires of dress-up and yanks them off. Over the months, Mo has tried to trim Hope's hair with mixed success. Once, a friend from overseas did a do for Hope worthy of Oooh-La-La Sassoon.


    Mostly, though, we've washed it, combed it and hoped for the best. This week, we did what we should have done months ago: Taken her to a salon and done her up right.



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    Monday, November 2, 2009

    Party people, unite

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    With all due respect to those lucky kids born on Arbor Day or Feast of Our Lady of Guadalupe, Hope still has you suckers beat. For our money, no birthday is more fun than Halloween, and we did it up again this weekend.

    Continuing a tradition of future humiliation that began last year when we dressed Hope up as a turkey, she was a ladybug this year. For the uninitiated, a ladybug costume is a lot like a turkey one, only it's a big red sack with red dots rather than a big brown sack with feathers.

    No matter, she the envy of the aphid colony, getting gussied up after a hard day of pumpkin carving. We had every good intention of trick or treating this year, but the weather was cold, the porch railing beckoned and Hope is accursed with lame parents. We had planned on hitting a few houses, but instead stuck to custom and sat on the porch and doled out Almond Joy, Baby Ruth and Big Boy coupons to all comers. We feel a bit guilty that we punked out, but rationalized that Hope couldn't eat any candy besides lollipops. Next year, we promised.

    Sunday we partied like Norse Gods, eating Elmo cake, ate ghoulishly themed food prepared by Mo (Mmm. Mmmm. I love me some Zombie Fingers, but wish I didn't have to pick around the green olives of the Eyeballs of the Undead) and played Mo's all-time favorite game, Pass the Pumpkin. It's a lot like Musical Chairs in that it involves music, flying elbows, bruised egos and lots of arguments. Somehow, the party acquired an Elmo theme. Like a lot of new-ish parents, our qualms about embracing rampant commercialism gave way to wanting to make happy our girl who loves the Tickle Me Kid.

    All in all, we whooped it up like we were at Greek Row in an archetypical Big 10 School. It's tough to believe sometimes that Hope is 2. Some days, it seems like forever. Others, it seems right. But it's a great milestone to chart progress. Last year, Hope wasn't even sitting up. Now, she's cruising like a big girl in a loaner walker and seems more like a toddler every day.

    Next year, we hope she's walking for real.

    Monday, October 12, 2009

    Walk for Will and Hope


    The weather was swell. The cause, worthy. The company, wonderful.

    Under cool but crisp skies, about 75 kindly souls trekked 2 miles Sunday for the First Annual Walk for Will and Hope. We're proud to report we smashed our fundraising goal and raised nearly $5,000 for the Cornelia de Lange Foundation. We're absolutely tickled and humbled by the response.

    All credit goes to Big Mo. This was her dream and goal for the five years after Will died, so we were honored and grateful to host the walk four days before what would have been his fifth birthday. Mo sweat the details, wrangling insurance, designing T shirts, coordinating refreshments, charting the course, navigating surprisingly cumbersome park bureaucracy and cajoling donations from near and far.

    My job was mostly comic relief and doing as told. As such, I'm updating the blog as she enjoys a well-deserved lounge, Cheez-Its and "Dancing with the Stars."

    We are terrifically appreciative and have so many people to thank. The response bowled us over and we're lucky to have such great friends and family to come out and support a cause that means a lot. There's a video yet to come with some highlights, but right now, we're just basking in the glow and preparing to write thank-you notes.

    So thanks to all. It was terrific.




















    Saturday, October 10, 2009

    They're here....



    Two months and four optometry office visits later, Hope FINALLY has her first pair of glasses. As you can sort of tell from the pictures, they're pink wire frames with cable arms that wrap around her ears and a rather large plastic thing called a universal bridge. They're a little big but I think we did the best we could given Hope's small head and features. I went to four different places -- two of which had to order special frames for us to even try on -- before we found these on Tuesday and I decided to go with it. They arrived yesterday.

    So far, Hopesy is actually doing pretty well with them! She kept her head down for the 15 minutes she had them on yesterday, as if they were heavy. Today, she's doing much better. Apparently this seeing stuff isn't so bad.

    But some sights, as you can tell from the picture below, are good no matter whether you can see them clearly or not -- like Hope's thumbs. She's been fascinated with her hands, and particularly her thumbs, for about a month now.




    Thursday, September 24, 2009

    Back to Higgins


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    We have steadfastly resisted the buzzword of the recession: The loathsome staycation.

    We work too hard and our cat annoys us too much to even consider the pitter-putter, dilly-dally, couch-potato siren call of lazing around home for a week, watching "Gilmore Girls" reruns until we can predict their oh-so-clever-banter, occasionally trekking to places we've already been a gazillion times and looking out the window and staring at that taunting bent nail keeping our storm drains in place, begging to be fixed.

    So it was off yet again to the poor-man's time-share, our rent-free and oh-so-scenic home away from home, Mo's parents place on Higgins Lake in northern Michigan. The leaves had changed, the tourists had fled and the wooded trails nearby practically inviting Lulu to poop on them.

    As usual, we had a grand time: Boating, eating much dip, sitting in the sands, introducing Hope to the wonder that is acorns and strolling through the tranquil woods, the gentle song of the swaying branches punctuated only by our calls of No, Lulu! No, No! Stop!

    Chasing our bliss, we made like college freshmen and skipped Hope's first week of school. What the hay: It was registration week anyway. She begins in earnest next week, receiving her therapy schedule today. Unlike party-boy freshmen, Hope has scheduled school before 11 AM, with both sessions starting before 9:30 AM. That's bad for any dreams of marathon keg-stands, but good for dear ol' Dad: This year, I can make them.

    Hope is doing great stuff. It's nifty to return around the same time each year to Higgins Lake because we can better visualize her progress.

    Last year, she couldn't sit on her own. This year, she not only sits, but spins in circles and has devised her own, quite ladylike, method of getting around by sitting spread-eagle, throwing her arms to the floor and pulling her to heart's content. Over Memorial Day, we were delighted when she took four tentative cruising steps next to a chair. Now, she's skipping from the chair to the bookshelf to the coffee table to the end table and onto the wall, a la Sylvester Stalone in "Cliffhanger." Last year, she could barely fit in the Snugglie. Now, she loves it.

    It's fun to look at photos from then and now to remind ourselves how she's become such a little girl while we weren't noticing. Of course, I could have made a video comparing and contrasting. That would make a lot of sense. Instead, I made one about hypnosis. Go figure.

    Thursday, September 10, 2009

    Back to School


    Hopesy had first day of school Wednesday. It was really an orientation more than school day but we got to see her therapists, which was nice (we haven't seen them since June). We were only there an hour and Hope spent a good half of that rubbing her head, trying to get her bow out. Apparently bows are so last year. I tried to tuck it way on the back on her head, in the middle, so she couldn't get it with either hand but she on was on to my tricks. I didn't even attempt to put her hearing aids in.

    We don't have her schedule yet but like last year, Hope will have two hours of therapy a week. That isn't much time to jam physical, occupational and speech therapy every week but it is what it is. Next year, she'll be in pre-school five days a week so I should enjoy this two day a week stuff while it lasts. My heart starts to palpitate just THINKING about plopping my 18-pound three-year-old on school bus next year. As Joel would say, those are worries for another day.

    Gotta run! We're off to get a flu shot.



    Wednesday, August 26, 2009

    Summer Reading





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    Hope has always loved books but this summer she seems to be even more book crazy. I have no idea if she loves the pictures or if it's just about turning the pages. Lately she's been touching her nose to pictures she especially likes (the one above is a picture of a red-haired little boy. Her first crush maybe?!????). It's too cute.

    In other news, we got her ankle-foot orthotics last week and she seems to be adjusting to them well. They're not too big or bulky, though I did have to get new shoes a size bigger so they'd fit inside. We also checked out glasses this week. They weren't a lot of options for small babies but we did find one set of frames from Fisher Price (who knew Fisher Price made glasses?) that seems to fit the bridge of her nose nicely and go right around her ear. She looks like a little professor in them. Hope thought they were hilarious and promptly yanked them off.

    Happy Wednesday!


    Saturday, August 22, 2009

    Mark your calendar (if you live in Metro Detroit)
























    It's official: We're FINALLY hosting a walk to raise money for the CdLS Foundation.

    This has been a dream of mine ever since Will died nearly five years ago (I actually picked the date, Oct. 11, because Will would've been 5 on Oct. 15. I get a lump in my throat just thinking about that). I got close to organizing something one year -- found a location, pulled a permit, talked to the foundation about liability insurance. But for whatever reason, I couldn't pull it together. I don't think I was ready emotionally.

    But with some prodding from a good friend and my supportive hubby, I finally decided to just DO SOMETHING this year. It may not be a 5K but it's a start and that feels good.

    So here it is: The 1st annual Walk for Will & Hope. It's going to be an informal 2-mile walk at a park near our house, Stony Creek Metropark. There won't be any clocks or mad dashes to the finish line. And there's no registration fee. We'll be accepting donations only so all people have to do is show up, walk for a good cause, and donate as much or as little as they'd like. Our goal is raise $1,000. People who can't make it can also write a check and mail it directly to the foundation: Cornelia de Lange Syndrome Foundation, 302 West Main Street, #100, Avon, CT, 06001 (Put Walk for Will & Hope in memo line). We also may have sponsor sheets that walkers can take to work or wherever and ask people to pledge a certain amount per mile.

    I just wanted to share. If you're in the area, join us! We'd love to see you.


    Tuesday, August 18, 2009

    Peepers




    Good news about Hope's peepers: They're not as bad as we thought. 

    We had her six-month check-up with her opthamologist, Dr. What-did-you-say-Sonny?, on Monday and apparently Hope's vision has IMPROVED. He said that as the eye develops, that can happen. I'm not sure if it's that or the tests aren't that accurate. Basically, they dilated Hope's pupils with drops that also paralyzed her focusing ability. Dr. What-did-you-say-Sonny? then flashed a small light into each eye while holding a lens of different prescriptions into each eye. I wasn't quite clear on his explanation but he said when something-or-other is neutral, he can determine what prescription Hope needs.

    Regardless, according to the testing Monday, Hope is nearsighted and is -4 in both eyes, which is about the same as my prescription (she was -6.5 the last time we saw him). Anyhow, I'm going to make an appointment with an eye place today to get her glasses.

    I have a feeling that getting Hope's glasses will be the easy part. Getting her to actually WEAR them on a daily basis will be a whole different story.



    Tuesday, August 11, 2009

    I love...




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    ...pancakes! 

    We've been working hard on transitioning Hope from baby food to table food. And while we still have a long way to go, we are definitely making progress. Last week, I made pancakes and she ate about three pieces -- one of which she picked up on her own! That's big news around here.

    Of course, she picked two more pieces and proceeded to bang them together but that's OK. Baby steps...




    Monday, August 3, 2009

    New tricks

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    Rumor has it that summer is in full flower, although you wouldn't know from actually living through it. Word is the Mercury climbed all the way to 70 degrees Thursday. Pity. We were too busy warming our cockles by the wood stove to pay much attention.

    Lousy weather or no, we have persevered, barely having a moment to tend to our crab grass  lawn or rotting pit of algae and muck koi pond, much less the blog. Indeed. Like it not, Hopesy and company have become full-on, 24-7 party people. 

    We got back a week ago from a delightful week with my family on the coast of Maine, searching for the perfect seafood platter, swimming, kayaking, playing on rocks and watching from the deck of our rented ocean side home as picture-postcard lobster men pulled their traps to pay the note on their BMWs. We liked the sunsets, sipping wine and vistas of Boothbay Harbor. Hope liked that the house had a mammoth coffee table that she could cruise round and round.

    We've become adept moochers, spending the weekend shamelessly cajoling invitations from friends with pools (Have we told you, Deb and Louie, how much we love your company?) and those with boats (Anne, Jeff, you mean the world to us). Between the begging, we're pleased to report that Hopesy is a Class A water baby. We took her swimming twice this weekend. Both times she giggled with glee, rearing back her head to reveal her burgeoning set of choppers.

    The choppers -- Li'l Jimmy Carter has even more front teeth coming in atop the ones Mo chronicled last week -- have her a bit crankier than usual. But she's still super company, and is developing a nifty repertoire of tricks. She began cruising days before the Independence Day and now that's all she wants to do, adroitly turning corners and even beginning to hold her own on the Look Ma No Leaning Scooter Thing-a-Ma-Jig scooter that Hope's physical therapists loaned her to get her walking. For weeks, she walked tentatively, needing us to guide her hands and she walked, frequently stiffening her back and refusing to go farther. Now, she's making circuits in the house. Stopping, though, could take more practice.

    More good news came last week from Dr. Spitenup, the wily gastroenterologist who speaks in Zen riddles but proclaimed himself so happy with Hope's weight (about 13 lbs.) and progress that we don't have to endure his interrogatories for another six months. That's a record.

    So we're happy campers. Now, about that crab grass...

    Wednesday, July 29, 2009

    One year and five pounds later

        
    (Above left: Ocean Point, Maine, July 2009. Above right: Schoodic Point, Maine, July 2008).

    What a difference a year makes, huh? We just got back from another great trip to Maine -- this time to picturesque Boothbay Harbor -- and looking through the photos reminded me just how much Hope HAS grown. The picture on the right was taken last July when Hope had just hit the 8 pound mark. We're now hovering at 13 pounds. Yes, she's wearing the same pink hat in both pictures but it actually sort of fit her this year (aside from the pesky chin strap)!

    I hope everyone is having a relaxing, fun summer. Ours has been a little frenetic but things should slow down now. We had a groovy time in Maine --  whale-watching, eating tons of seafood, shopping and playing on the rocks. I'm not sure Hope was exactly impressed with the scenery. Her favorite part of the trip was cruising around the coffee table in the living room (more about that another time).

    On the home front, Hope has four teeth now -- two bottom teeth, a molar, and one front tooth -- and seems to be cutting her other front tooth because she's been a big crab apple most of the week. The only thing that seems to make her happy is her toothbrush. She's also cruising a ton and is just starting to shift from one piece of furniture to another or whatever is close by. She was fitted for ankle orthotics yesterday to give her a little more support with walking which we should get in a couple weeks.

    Happy Wednesday!

    Monday, July 13, 2009

    Summer fun


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    Ahhhhh, summer.

    We're only a month in and I'm EXHAUSTED. From chaperoning a girls camp for a week up in northern Michigan to spending some time with Hope and my parents on Higgins Lake, I feel like I've been on the go nonstop since the school year wrapped up. And I have. But there are certainly worse things. I'm really lucky I've gotten to do so much.

    My first big foray of the summer was a week at Girls Rule Our World (GROW) camp at Chalfonte House in Elk Rapids, Michigan. Joel briefly wrote about Chalfonte in January but it's an incredibly special retreat house that a family friend started years ago. It holds a special place in my heart and it's where I've gone every March since I was 19 to spend a weekend away with some amazing women to bond, reflect, eat and shop for Women's Weekend. Anyhow, about three years ago, the family friend who started Chalfonte (it's his beautiful Victorian house), Jimeyer, asked if I'd like to be involved in GROW, a retreat for teenage girls. The idea was to give girls who may have medical issues, emotional problems, unstable family situations, or just need a break from home a week to away to experience new things and thus, grow. I agreed and it was such an incredible (and exhausting) experience that first year I've been back twice more as staff. It's a ton of work but by the end of the week you really feel like you've given these girls an experience that will last a lifetime.

    This year was no different. We swam like fish, hung out at the beach, went to Sleeping Bear Dunes, camped out in the woods one night, got beautiful portraits done by an incredibly a local artist, made tie-dye shirts, and went tubing. I was the main staff person so it was my job to coordinate all activities, meals, etc. for the girls.

    The good news is I was so busy cooking meals and moving from one activity to another that I didn't have a lot of time to dwell on Hope and the fact that I was away from her for SEVEN DAYS. I missed her but I knew she was in good hands with my mother-in-law, Anita, and Joel and that they were having a good time. The other good news is we had a fulfilling, unforgettable week and I really believe a lot of the girls experienced things they'll treasure for the rest of their lives. Some left crying, asking if they would be invited back next year.  

    Now, the bad news: After dropping off the last of the girls -- I also drove the girls around all week, along with another staffer, in a van the size of Toledo -- I couldn't wait to get home. I kept envisioning Hope's smile and couldn't wait to feel her little hands on my cheeks.

    So much for visions. As soon as Hope saw me, she didn't smile. I don't know if I was too loud or what -- she did have her hearing aids on which we've been kind of lax about this summer for various reasons -- or she wasn't feeling well but she stiffened up when I held her for the first time and even cried a little bit. I thought I handled it pretty well. I calmed her down and gave her back to Joel. I waited until she went to bed and then I cried.

    Things are fine now but I honestly wonder if she was mad at me. Does that happen? What do you all think?

    Anyhow, sorry for the long, rambling blog post. I hope everyone is having a great summer. We're off to Maine next week to hang out with the Kurths & Konniks in Boothbay Harbor. We can't wait!

    In the meantime, Hope continues to dazzle us with her cruising -- she's now turning corners. She's still nowhere near being able to pull herself to a stand but this kid is ready to move. She's also obsessed with her toothbrush and about to cut her fourth tooth. She got a molar out of the blue in late June. I knew kids with CdLS could cut teeth in an unusual pattern and I guess Hope fits the pattern. So now she has her two bottom teeth and a big molar on the left. It's kinda funny.

    Happy summer!

    Saturday, July 11, 2009

    Beach beauties


    Mo and Hopesy just returned from a week of beach-combing, ice-cream eating, blink-and-you-miss-it-parade watching and copious card-playing Up North. They let me come for a few days over Independence Day, and then said: "Beat it, punk." 

    Those two are becoming regular cottagers. Next week, it's off to the coast of Maine for a week. Last I checked, I get to come as well.

    Sunday, June 28, 2009

    Surviving without Mo

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    Mo went off to do good deeds last week, leaving her only daughter and only known husband to fend for themselves. We looked in the fridge, saw three slices of hard salami, two packages of Arby's Sauce and a six-pack of forlorn, long-neglected, non-alcoholic beer. We wept.

    We looked a Lulu, sized up who would win in a starvation match and surrendered. We called Grandma in for reinforcements. She arrived from Maine just in time. Hope was wearing Scrabble tiles for diapers and bottle caps for hearing aids. In two days, I lost 45 pounds, grew a beard and began delightful conversations with a volleyball I called Wilson. 

    Things are tough around here without Mo. 

    Actually, her semi-annual, volunteer trip as a camp counselor in Elk Rapids -- I'm sure she's champing at the bit to dish details -- was planned months ago, as was my mother's visit.

    Her timing was great. The weather was terrific, the Detroit scandals are in full flower and Hope was in mighty fine spirits. She's doing so much so quickly these days, it's hard to keep score.

    Suddenly, our cuddly lap pal needs to move. A few weeks ago, she began to cruise, and now there's no stopping her. She has several hobbies, including a nifty game my mother taught her called "Librarian" that involves scampering from one side of a bookshelf to another and knocking off all the titles except one, David Simon's excellent "The Corner: A Year in the Life of an Inner-City Neighborhood." 

    She stops and flips all the pages, either fascinated by the gritty tale of urban decline or the book's spiffy red cover. We call another game "Go Get the Remote Control." It is similar to "Librarian" but involves a remote control, a leather couch and a noticeable lack of detail about the economics of the heroin trade.

    Another new hobby is something called "Look at that Beautiful Creature in the Mirror." I taught her that one. It involves staring at the most beautiful creature in the mirror, waving rather coquettishly and coyly, having difficulty containing your excitement, waving your arms in joy and breaking into hysterical laughter. It took me 10 years to perfect the game. Hope has mastered it in a month. Smart cookie.

    While Mo did good deeds, we ventured north for a mini-getaway to Michigan's kitschy Little Bavaria for 24 hours of eating chicken dinners and bratwurst, riding in paddle boats, swimming and looking at ourselves in the mirror and laughing with delight.

    Great times. Big Mo is back and we are so happy we broke from the revelry to stop at the world's largest Christmas store to buy her a taco ornament with an inscription showing how much we missed her.  It reads, "Big Mo's Taco."

    My mom left town on Saturday, and we were all very sad, but we see her in three weeks for another vacation. That makes us so happy we need to head soon to the bookshelf.

    Friday, June 12, 2009

    The Bubble Man



    There are moments when you step outside your body, listen to the words leaving your mouth and realize: Holy Tamole, my life has really changed. It went down at work, last Friday, idly chatting about the weekend.

    Co-worker X had concert tickets. Co-worker Y was leaving town. Co-worker Z had two parties.

    "We're going to see the Bubble Man," I said, as if we were going to the post office.

    Blank stares.

    "Y'know, the Bubble Man? He's at the Bubble Festival."

    The words came so casually, so naturally, so predictably, as though the Bubble Man requires no explanation. Like Cher, only jollier and not quite so cougar-ish. The Bubble Man blows bubbles. Big ones, little ones, funny shaped ones, ones that make you say "ooh" and then "ahh."

    The Bubble Man indeed headlined the Bubble Festival in Ann Arbor, a celebration of -- wait for it -- bubbles. We went because Hope likes bubbles. We blow them on the deck. She claps her hands with glee. We blow them some more and Lulu tries to eat them.

    So it seemed appropriate that we would make the trek for bubble-mania. We caught the Bubble Man's final show of the weekend, a 20-minute extravaganza of bubbles-within-bubbles, ginormous bubbles, gazillions of tiny bubbles to make Don Ho proud.

    Somewhere, there is a handbook of children's entertainers. Buried deep within it, perhaps in Subsection 12, Article 7, there is a mandate: You must wear suspenders and brightly colored T shirts, ponytail optional but strongly recommended. 



    It must have been the end of a long weekend for the Bubble Man, who held court at the Hands-On Museum. He flubbed some tricks. His finale popped prematurely. At times, he seemed frustrated, but the Bubble Man is a pro. He soldiered on, to the delight of his tot-sized fans and us. 

    Hope seemed to dig the Bubble Man, but enjoyed the museum more, especially its mirrors. Like her old man, her new hobby is staring intently into them, eyeballing the gorgeous specimen on the other side and clapping with delight. Can you blame her?


    Thursday, June 11, 2009

    Summer-summer-summertime




    It's the kind of thing that can keep you up at night. You flip through magazines. You scour the aisles at Hallmark and your local craft store. You wonder, "Will they like it? Will it be just right?"

    You know what I'm talking about (especially moms): What to get your kid's therapists or teachers for an end of the school year gift. I know Heidi from God's Grace in Practice blogged about this a couple weeks ago.

    I'm still learning what the etiquette is for all stuff but I figure a small holiday and end-of-the-year present is the least I can do for the important people helping Hope learn to walk and talk. 

    Last year, I bought each therapist a small basil plant (I was obsessed with growing herbs in my backyard). This year, I stole an idea from Parents magazine for a homemade pencil holder. It sounds very fourth grade-ish -- paint a tin can, put some colored rubber bands around it along with a nifty name tag on it and you're all good -- but I thought it turned out cute. Joel promptly mocked me when he saw me painting the cans. I know what he WON'T be getting for Father's Day.

    Our last days of therapy were Monday and Tuesday and we finished the school year with a big party at school on Wednesday. There were train rides, duck games, and cupcakes galore. Of course, Hope liked the balloons attached to the table centerpiece more than anything else. 

    So summer is here again. We won't see Hope's therapists again until September which bums me out in a way but it'll be nice to have a break, too. I'm off to northern Michigan for a week at the end of the month -- I'll post about that later -- and we're all going to Maine for a week in July. In between, I'd love to take Hope camping, dip her toes in her own sandbox, take her for a swing ride and go swimming again (she's only been once -- ever -- in a heated pool at the CdLS Conference in Chicago). 

    What are your big summer plans?

    Monday, June 1, 2009

    Return from exile

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    Aloha, sports fans:

    I've been away from BlogLand for precisely one month, and I gotta be honest: It's not all it's cracked up to be. Reality is spooky! It's hot outside, there's yard work to be neglected and diets to abandon.

    Fortunately, Mo filled in superbly in our small corner of the cyber village. OK, more than superbly: Mo rocks this blog thing. Granted, there was a conspicuous absence of Finnish disco dancers and fat men playing xylophones -- and a disturbing proliferation of exclamation points -- but I was entertained, enlightened and impressed. So much so, in fact, that 18 months into this social experiment, we've decided to do what adults would have months ago: Share the blog love. She'll write. I'll write. She'll share feelings. I'll post inappropriate videos of our 19-month-old cherub to the tune of "I Drink Alone." A 1,000-year reign of mirth will ensue.

    Perfecto! It's just like the Romper Room preached decades ago: Sharing is fun!


    Sunday, May 31, 2009

    Duck, duck...



    A quick shot of Hope from our trip up north last week.  Ducks aren't for playing; they're for snacking!


    Saturday, May 30, 2009

    Grateful but guilty



    Driving to work this week, I noticed a billboard perched on the side of the highway.

    It was covered in notebook paper and it said, "Interesting fact about recessions: They end." 

    As much as I appreciated the message -- it was from CBS News of all places; a page from Katie Couric's "notebook," I assume -- it certainly doesn't feel that way in Michigan, and Metro Detroit in particular.

    Michigan is mired in what seems more like a depression than a recession. We have the highest unemployment rate in the nation, 12.9 percent. Our biggest employer, General Motors, is teetering on the edge of bankruptcy and will likely file on Monday. Foreclosures are through the roof. We know couples who have lost two jobs and are surviving on two unemployment checks.

    I know we're not alone in our pain. I read about the job losses and foreclosures across the country. But while the entire nation is hurting, Michigan is really hurting. We need a tourniquet.

    So seeing that billboard this week really struck a chord with me. Joel and I have been very fortunate that we've been able to ride through this recession relatively unscathed so far. Yes, our house has lost thousands of dollars in value (a realtor told us earlier this year that we could sell it for $70,000 less than we bought it for) but the most important thing is we have Hope, our jobs and our health and that's all that really matters.

    But a couple weeks ago, our newspaper announced that they need to make "budget reductions," meaning layoffs. Joel and I, who met at the paper working on a story together, weren't entirely surprised. If the car industry is doing badly, the newspaper industry is doing even worse. As ad sales nosedive and more and more readers get their news online, newspapers everywhere are slashing staff, downsizing, and in some cases even closing.

    In early April, our paper, The Detroit News, along with the Detroit Free Press, made the radical decision that we would stop home delivery four days a week and only deliver the paper on Thursdays and Fridays. The move cut production costs but still allows us to put out a paper six days a week (we don't have a Sunday paper). It was a bold move but one we realized the paper likely needed to take if it wanted to survive.

    Anyhow,  with the impending layoffs, I knew I would likely lose my job. I work two days a week and according to our union contract, part-timers go first in the event of layoffs. So since mid-May, Joel and I have been nervously getting ready to live on one income: calculating how much unemployment I could collect, scrutinizing our budget to look for other areas to save, thinking about jobs I could do on the side for a little income. I was sad but resigned to the fact that my 10-year career as a journalist would basically come to an end. 

    But I got a surprising call Friday: I would not be losing my job. Management decided not to cut at all from the reporting staff and instead they were able to reduce costs from the business side of the operation -- dozens were laid off -- and three managers, one of whom Joel and I know well, lost their jobs. Several people who were also planning on leaving the paper anyway also volunteered to get laid off.

    I'm so thankful I still have my job -- for now -- but I also feel guilty. While I get to keep working -- part-time at that -- other people, some who I know personally, will have to figure out what's next in an industry where there are no jobs in a state whose economic structure is collapsing. As a colleague put it yesterday, it's almost like survivor's guilt.

    So we'll keep hanging on here in Michigan. If recessions do end -- and I know they do -- I just wonder when this one will. I hope soon.  


    Friday, May 22, 2009

    Look who's talking

    video

    We should've known this was coming given her two bigmouth parents: Hope is becoming a Chatty Cathy (or so we hope -- no pun intended).


    For whatever reason, our little pipsqueak has finally realized that when her lips, tongue and vocal chords work together, she makes sounds. I think it started with raspberries a couple weeks ago and this week she's progressed to actual sounds. It's not babbling but it's something. She doesn't say any consonant sounds yet but I did hear a "la." And I have no idea why but she's especially vocal when she's on her belly or standing next to our couch, facing the back of it. Again, I have no idea why. I just go with it. Joel thinks she sounds like a wounded seal. I just love hearing her voice at all.


    To the other CdLS moms, is this typical? Some CdLS kids are non-verbal. They use sign language or other devices to communicate. So I've never taken it for granted that Hope would talk. I've prayed and hoped that she would but I always knew that speech is very, very delayed. So I'll take any sounds from her, even wounded seal sounds.


    Other than Hope's vocalizing, we've just been enjoying the nice weather the last couple days (though I had to work Thursday and Friday). We went for a nice long walk on Wednesday. Unfortunately, it was too long for Hope and she had a meltdown & refused to sit in the stroller without wailing for half of it. I had to hold her along with Lulu's leash and push the stroller at the same time. I'm sure my mother of the year applications will be rolling in any minute now. I had several passers-by look at me like I was completely nuts. About a half mile from home, I finally realized I needed to just strap her in, let her cry and she would get over it. And she did. Lesson learned for next time.


    Happy Memorial Day Weekend!



    Monday, May 18, 2009

    Shake, rattle and roll


    video

    First, an apology: Steven Spielberg, I am not.

    Above is a little video snippet I shot of Hope this weekend. After months of refusing to roll or even really be on her back (or belly), the little stinker has decided that rolling isn't that bad after all. She's still not doing full, continuous rolls on her own but she's getting much, much closer and she's so much better at rolling from her back to her belly. Sometimes she needs a little nudge but that's it. I've decided that I'm going to try really hard to do everything I can to get her to crawl so rolling is a good start.

    In other news, Hope has an ear infection in one ear and has decided clapping is the most amazing thing ever. She claps for everything. Getting her pajamas on? YAY! Can't sleep? YAY! Lulu licked my face? YAY! I have thumbs? YAY! It's pretty cute. 

    As a friend said today while watching Hope gnaw on a foam "W" (yes, the foam letters are still incredibly popular around here): "It's all about the simple pleasures." YAY!

    Also, as you'll notice from the video, my obsession with hair bows continues. I went to a friend's house over the weekend and she introduced me to a friend of hers who makes the most amazing little headbands, bows and hats. The headbands -- one of which Hope has on in the video -- have been great so far at keeping the little hearing aid picker-outer from prying them out the first chance she gets (Today I caught her gnawing on one in her car seat while I was driving). I'm just glad we can finally take a break from the bonnets. I'm sure Hope is too.

    Wednesday, May 13, 2009

    A new transition

       
    (Shirley, Hope's physical therapist, left; Barb, her OT, right)

    Hope & I dropped off some presents this week for two very special ladies -- her occupational therapist, Barb, and physical therapist, Shirley.

    About two weeks ago, Hope officially "transitioned" from the Early On home program into the school setting, meaning she'll no longer get any therapy at home. It'll all be based at a school about 25 minutes from us. As part of the transition, she also has a new OT and PT. And she's getting one-on-one speech therapy, which I'm really excited about it. All in all, Hope gets two hours of therapy a week. Sometimes I wish it was more but two hours is the maximum you're allowed in the Early On program in our county.

    The hard part of transitioning out of the home program is that we won't see Barb & Shirley anymore which makes me sad (thus the "thank you" gifts). When Hope started working with them about a year ago, she barely had any head control, was nowhere near sitting, and the binky always had to be nearby in case of a major meltdown. Today, she's sitting great on her own, getting better and better trunk control, can hold her own bottle and can push a little pushcart thing on her own with just a little extra support. She's come so far.

    And Barb & Shirley didn't just help Hope. They taught me exercises I could do to build Hope's strength, ways to maximize her independence and the importance of "play." They taught me that I didn't have to set aside time for "therapy" each day but to just to incorporate certain things into our play together. I really feel like they've helped make me a better parent. 

    And they gave me optimism about Hope's future. When you have a child with special needs, you don't take anything for granted. Nothing is a given. I never assumed that Hope would sit, walk, run or talk. Maybe I'm a pessimist. Or maybe it was just a way of protecting myself. But Barb & Shirley always made me feel good about all of Hope's achievements and milestones, no matter how long it took to get there. I'll never forget the day Shirley said Hope was a "mover" and she sees her running one day. I really hope she's right. 

    Anyhow, thanks to Barb & Shirley. Thank you for being amazing teachers, good listeners and just compassionate people. Keep spreading that optimism around. We'll miss you!


    Mother's Day montage



    Just a quick glimpse of how we spent Mother's Day.

    I had a great day: slept until 8 (tried to sleep in longer but the body is programmed now to wake up at 7); enjoyed a great breakfast of waffles and bacon by Joel (yummmm....bacon); read the paper; watched some old videos of Hope when she was about the size of a chickpea and marveled at how much she's grown; had a mimosa with the fam; and then went to a nice brunch with my parents, brother and sister.

    We came home and had strawberry shortcake and opened some presents. And later Joel & I watched the "Amazing Race" season finale and "Cold Case" (the only show Joel really watches). Perfection.

    Happy belated Mother's Day to all the mommas out there! 

    Friday, May 8, 2009

    CdLS awareness day

    It's 11:54 p.m. on Friday night. Hope is conked out in Joel's arms after her nightly bottle and I have six minutes to quickly spread the world about CdLS Awareness Day, which is today, before it's over. I feel terrible I didn't get to it sooner. So much for staying on top of the blog. How do you regular bloggers do it?

    The truth is I wish every day was CdLS Awareness Day. I wish I could spread the word so much that I wouldn't have to tell people every day why Hope is so small, why she wears hearing aids or isn't anywhere near walking on her own at 18 months old (though she can make a mad dash in her walker). I wish thousands of children, often on the more mild end of the syndrome's spectrum, wouldn't go undiagnosed, missing out on vital services and resources that a diagnosis could provide. I wish one day everyone would just know.

    But we're not there yet. And I'm not sure we ever will be. Until then, that's why days like today are so important. If you didn't know, CdLS, or Cornelia de Lange Syndrome as it is formally known, is a congenital syndrome, meaning it is present from birth. Common characteristics include low birthweight, small head size, slow growth, eyebrows that meet in the middle, upturned noses and thin downturned lips. It is thought to occur in one in 10,000 live births. And while recurrence is rare-- there seems to be some debate on the recurrence rate but it could be as high as 1.5 percent -- it does happen. Joel & I are evidence of that. Neither of us has the syndrome but one of us is carrying that genetic mutation that causes it in some of our reproductive cells. That's why we've had two kids with it.

    To learn more about CdLS, visit the CdLS Foundation Web site. Spread the word!



    P.S. Above is a picture of Hope in a pair of fuzzy wool slippers Joel & I got her from the beautiful island of Corfu in Greece while I was pregnant. She wore them for about three and a half minutes today, doing everything she could to kick them off before she finally succeeded. 

    Wednesday, May 6, 2009

    Special exposure Wednesday

      
    (Easter 2009, almost 17 months old, left; Easter '08, five months, right)

    A year ago, Joel & I thought it would be fun to stick Hope in her Easter basket because she was so tiny. This year, we decided to do it again. She didn't fit as well and was none too pleased. Her legs didn't fit and I had to kind of squeeze her in (another example of my great mothering). It made me realize that as slow as we think Hope is growing -- about two ounces a week -- she IS growing and these photos remind me of that.

    By the way, Hope has officially gained back all the weight she lost from the nasty stomach virus she caught (10 ounces) and then some. She's now up to 11 pounds, 8 ounces. Hip-hip-HOORAY! (You'll notice I use 50 million more exclamation points than Joel. I love 'em!) 

    Happy Hump Day! 


    Tuesday, May 5, 2009

    A new sheriff in town

    Sorry, folks. You've seen your last karate-kicking chimpanzee for awhile.

    Yes, you read the last post correctly: I'm taking over the blog. For a year and a half now, Joel has dutifully signed my name to the end of the each post but in reality, he was really the man behind the curtain. Yes, I did the fact-checking (he tries but I'm better remembering all the details) and editing but the magic was really all his. 

    And the truth is, the blog is Joel's baby (besides Hope and Lulu, of course). He'll probably hate that I'm sharing this but he spends HOURS lovingly crafting videos of Hope as Godzilla or the night Lulu eating Hope's hearing aids (one of my favorites; I still laugh thinking of that steam coming out of Hope's ears). The writing part only takes Joel about 15 minutes but it's the videos that he puts so much effort in. And he's so good at it.

    But now it's my turn. So, fellow bloggers & readers, here's what you can expect from me for at least the month (or until Joel goes nuts and is dying to put together some whacky video on Hope on "Dancing with the Stars" or a Lulu western. I'm sure there's some footage out there with chimpanzees in cowboy hats and holsters): 

    1. More basic details & milestones: I laugh sometimes when Joel writes long, windy posts about Billy from Family Circle and how it helped shape his cynicism (or something like that) but fails to mentions that Hope has two teeth now, is almost waving, hit the 18-month mark last Friday and just transitioned from home therapy to all school-based therapy.  I think there's nothing wrong or boring about sharing the basics. I want to share more of those because they may be small beans to some people but they're huge to us.

    2. A mother's point of view: Let's face it. Moms and Dads approach things differently. I realized that once again when Joel's family came to visit two weeks ago. I spent days cleaning, washing sheets, scrubbing the floors and menu-planning. Joel put the newspaper in the recycling bin the day before they arrived and his work was complete. Anyhow, I'm excited that I get to share my thoughts on things.

    3. More of a dialogue: I'd like to create a little more give-and-take with this blog while I'm in charge. I follow a lot of other families who have children with CdLS and I love the posts where someone poses a question about a situation or circumstance and wants feedback from readers. I like that.

    4. Less videos: Sorry! I wish I was a video mastermind but I'm not. I'm going to learn how to make my own, soon, so maybe I will post some. Who knows.

    5. Honesty: I hate sugar-coating things. Maybe it's my Midwestern background. But I promise to be straight with you all about what's really happening, warts and all. 

    Well, I think that's it. I'm really excited to be taking things over for awhile. I think one of the biggest challenges for me will probably be posting regularly but I'll do my best.

    Thanks for following and hold on for the ride! Hee haw (imagine chimpanzee in cowboy hat here)!