Category Archives: All About Wonderboy

All About Wonderboy

Yesterday Was the Big Day

Many thanks to all of you who who sent notes of concern and well wishes for Wonderboy. His surgery (hernia repair and tailbone removal) yesterday went very well. We were home earlier than expected, and he seems to be feeling all right. He was groggy and wobbly last night but today he’s steadier on his feet. It will be a while before he can sit comfortably, of course. He keeps forgetting this and squats down en route to a sit, and then halfway down he’ll remember that it hurts and he’ll just stand there in the half squat, glaring fiercely. This is hilarious and I have several times insulted him by laughing. His bottom may recover more quickly than his pride.

I dare not speculate as to what excitement he will provide us with next.

All About Wonderboy, Sign Language

It Must Be a Sign

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We had an explosion here last week. A language explosion—Wonderboy is suddenly bursting with new signs at the rate of three or four a day. It’s awesome. He has even put together his first sentence—and I warn you, it’s a heart-melter. Daddy love.

Jane’s baby book (the only one that has anything written in it—sorry, children numbers two, three, and four) contains dated lists of the words she was learning to speak. I collected them with the zeal a philatelist reserves for the rarest of stamps. I would have pressed each new word between tissue like a wildflower, if I could have. Witnessing a child’s determined quest for language is one for me of the best parts of motherhood.

And this time—oh, this time is the best yet. I’m sure my daughters will forgive my saying so, because they’re caught up in the spell too. Wonderboy’s hands shape meaning from air. Mommy, Daddy, baby, cracker, help, hungry, banana, more, sick, scared, let’s go, bye-bye, mine, hi, ball, uh-oh, jump, water, kiss, signing, bird, dog, please, finished…I’m sure I’m missing some. I can’t keep up.

Hand in hand (so to speak) with the emerging signs are new spoken words. Sure, so far they’re all variations on the same few sounds—eh eh (help), ah-ah (cracker), mah! mah! (more), MAH-meh (Amen)….We’re grateful for the ASL signs that help us translate his speech. More verbal speech will come. But he already speaks volumes with his grin and his fluttering hands.

This morning he seemed to be practicing all the words he knows, hands flying from one sign to another, talking to no one but himself, chuckling with satisfaction. It put me in mind of one of Rachel Coleman’s beautiful songs on the first Signing Time video.

Tell me that you love me,
Tell me that you’re thinking of me,
Tell me all about the things you’re thinking, both day and night.
Tell me that you’re happy
And you love it when we’re laughing,
Tell me more, oh tell me more,
Show me a sign….

I have raved about Signing Time here before, and I’m sure I’ll do it again. It’s hard for me to imagine our lives without Signing Time. Rachel Coleman, the creator, and her daughter Leah, who is deaf, and Leah’s cousin Alex, who is hearing, are practically part of our family. “Rachel says” and “Leah says” are regular utterances around here. When Wonderboy watches the videos, he looks back and forth from me to Rachel, or from his sisters to the children, in awed delight. His hands soar through the air, mimicking his beloved Rachel. He understands the spoken words “Signing Time” even without his hearing aids in. (This is significant. He probably hears something like “eye-ee-eye,” but he sure knows what it means.)

Rachel’s songs have become my personal highway belt-it-out favorites (along with Marie Bellet and Bruce Springsteen), because she *gets it* so completely. Leah was a year old when her parents learned she was deaf. Rachel’s family’s love and occupation is music, and my hat is off to Rachel Coleman for finding a way to so beautifully combine her old life with her new one. Next to the joy she has brought my children, my favorite thing about Rachel Coleman is her honesty in lyrics. Her song, “The Good,” expresses my understanding of motherhood better than anything I’ve ever written: “Maybe we won’t find easy, but baby we’ve found the good.” And the inspiring “Shine” on Volume 6, written with both Rachel’s children in mind (her younger daughter, Lucy, has spina bifida and CP), speaks frankly of the pangs that sometimes hit the heart of the parent of a special-needs child:

Sometimes I see you stuck
For such a long time
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do
Until somehow you do
And you do – you do – you shine

The days and months and years,
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine
And you do, you do, you shine

Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine

Oh how Rachel nails it! I’m so glad he is mine. Yes, maybe we haven’t found easy, but baby, we’ve found the good. And so very good it is. All the signs say so.

All About Wonderboy

If Time Is Money, My Exchange Rate is Too Low

Just a little recordkeeping here…

June 24, hospital outpatient clinic visit. Arrived at 1:15 for a 1:15 appointment. Taken to exam room at 3 p.m., saw doctor around 3:20. We adore this particular doctor and I know the long delay was not his fault. Just the nature of the outpatient clinic. I’m pretty sure the appointment times are established in a parallel dimension in which the laws governing the passage of time bear no connection to those in our own dimension. Just a theory. I could be mistaken.

July 5, different hospital, pediatric surgeon’s office. Arrived at 1 p.m. for 1:15 appointment. Was informed by jovial secretary that there had been an “oversight”—the doctor wouldn’t be in until 2. “Oversight” is, of course, a synonym for “really big scheduling mistake I, the secretary, made but would prefer not to cop to.” I know this because I heard her murmur the truth to another patient whom she seemed to know very well. We, being new patients at this practice, were not privy to the inner circle of truth regarding clerical screw-ups. As for the doctor “coming in at 2,” that translates to “entering the building at 2:25” in actual Earth time. But I’m sure he was on time according to the clock in that other dimension I was talking about.

July 12, back to the first hospital. Different doctor (also a guy we really like), different department. Neurosurgery this time. Arrived at 11:00 for an 11:00 appointment. Shown to exam room at 11:25, visited by doctor at 12:10.

During the past two months, I’ve racked up over a dozen hours of waiting time in various medical offices. Shouldn’t there be some kind of “frequent waiter” policy that earns you, say, a $20 deduction from the hospital bill for every X minutes spent in the waiting room? Ooh, and double points for wait time in the actual exam rooms, because it is so doggone hard to keep a toddler occupied in one of those tiny little semi-sterile spaces in which the most interesting objects are the sharps container and the biohazard wastebasket.

At the very least I think you should get a card that permits you to cut to the front of the line in the hospital cafeteria. And free pudding. Yeah.

All About Wonderboy, Family Adventures

Crashing Halt

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People have been writing to ask where I’ve been lately. Waiting rooms, mainly.

In May I wrote about the roller coaster spring we were having—well, ha. Turns out that was just the kiddie-park ride. Wonderboy was just warming up for the big loop-de-loop. Nosebleeds, thrush, my little adventure with a tick…small potatoes. I’ll see your tick bite and raise you pneumonia, mom…

But that’s jumping ahead. First there was the skull fracture. (Sometimes I can’t even believe I type sentences like that one. I remember a time when the too-close clipping of infant Jane’s fingernails seemed high tragedy.) Wonderboy is walking all over the place, hooray! But his protective arm reflexes are poor, oh no! When he tumbles, as toddlers do, he sometimes hits his head. One of those times, the physics (so our neurosurgeon informed me) were perfect to crack his skull. A small crack. A linear crack, the simplest kind. Don’t worry, the neurosurgeon informed me. It’ll heal on its own, happens all the time.

Ohhhhhhkay.

A few days later, I’m changing Wonderboy’s diaper and oh no. Can’t believe my eyes. I could swear his hernia is back. This would be the hernia that was surgically repaired over a year ago. Less than a 1% recurrence rate, according to Google. Which means OF COURSE it’s back.

One all-day ER visit later, the hernia has been temporarily reduced (it pops back out the next morning) and—surprise—a precautionary chest x-ray (since he also had a fever) reveals that he has pneumonia. Triple whammy!

By this point, it’s early June and we have already canceled our long-awaited trip to New York to celebrate Jane’s 10th birthday with her best friends. This decision, while crushingly disappointing, turns out to have been a blessing, because otherwise we would have been sitting on the Jersey Turnpike with a baby with a mysteriously recurring hernia and, oh yeah, pneumonia.

The chaos of the next few days causes us to also cancel a long-awaited visit from two terrific teenage girls, daughters of friends of mine. This is a huge blow. We had all sorts of fun Virginia sightseeing planned. But the painful decision turns out to be a wise one, because that week too was filled with back-and-forths to various area hospitals. (You don’t even want to get me started on the insurance/out-of-network hospital mess.) Was that just last week? No, wait, it was the week before last. Right.

So where are we now. The pneumonia is gone, hooray. The swelling from the head injury has mostly gone down. But the hernia is well and truly back. There’s another surgery on the immediate horizon. A second procedure will be performed at the same time, because unfortunately the skin around Wonderboy’s protruding coccyx is beginning to break down. We knew the tailbone would probably need to be removed someday but we were hoping it could wait until he was a little older (and fatter). Right now surgery is scheduled for mid-July.

I’m writing a book in my head in the waiting rooms. At this point I could write a book ABOUT waiting rooms. Except I’d much rather write about Wonderboy and his sisters. And roller coaster rides.

P.S. If you’ve emailed me lately and I haven’t answered yet, all of the above is why! I’m slowly getting caught back up, though. Really!

All About Wonderboy, Who We Are

Hands in the Air

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Rollercoaster_1So far, ours has been a spring of swoops and dives. Giant up-swoop: Wonderboy is walking! Really and truly walking, all over the house, sometimes clapping for himself as he goes. He can’t get up onto his feet by himself yet, but if you stand him up he takes off like a little wind-up toy. He is walking for the sheer joy of motion, not as a way of getting somewhere, not as a means to an end, but as an end in itself. It is all about the going (which of course I can’t help seeing as a metaphor for our philosophy of education: it’s about process, not product). I wish I could upload video here; I wish everyone could see this eager boy trucking along, he who had to wait seventeen months for mobility. He is a Wonder-of-wonders-boy.

Little down-swoop: He is a boy who scared his mother silly by having a major nosebleed in the middle of a nap one day last week. I went to get him up and aaaaahhhhh! He was lying there drenched in blood. Now you know that given Jane’s history our first thought, whenever there is unusual bleeding involved with one of our children, is going to be ‘low platelets?’ So of course we had to take him in for a blood test, which I am thrilled to say came back perfectly normal. The nosebleed seems to have been merely a change-of-season dryness thing. Whew.

Then three days later I discovered the Boy had a mouthful of sores. Thrush. Ugh. Enough said. (But he’s doing better now, thanks.)

So that was two unplanned doctor visits in the space of a week. A few days later I found a tick happily dining on my stomach. ::::shudder:::: When we pulled him out, his head remained stuck tight. Ugh ugh ugh. I wound up having to go to the doctor on Saturday morning to have it dug out. Not exactly the way I’d planned to start the day of our (big upswoop coming) 11th anniversary. But you know, it sort of fit the ‘so ridiculous you have to laugh’ motif we’ve got woven through this marriage. As a couple, Scott and I seem to be a magnet for misadventures. Somehow we don’t mind, because we love a good story. And you don’t get good story if the roller coaster stays flat. It’s got to swoop.

All About Wonderboy

I Try Not to Resent the Fact that He’s Funnier Than I Am

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I’m hijacking another post from my husband’s blog. It’s too good not to share.

Expertise, by Scott

So it’s a gorgeous day today, sunny, few clouds, tiny breeze now and then. I’m hanging out with Top Management and The Boy as she does a little bit of gardening out front and he practices going in a semi-circle, holding onto my knee as I sit on the front steps. He’s occasionally tempted to let go and see how far he can get but prudence is currently the better part of his valor. Considering the fact that just six months ago they weren’t sure he’d ever walk, I cut him a bit o’ slack.

We’re chatting and it’s extremely pleasant and then I look down and notice something odd I didn’t THINK I’d noticed before but with me who knows? And as is my oh so formal wont, I blurt, “What the hell?”

Top Management turns around and we both look at this puddle on the sidewalk which didn’t seem to have been there before. And it’s bright and sunny and there are no other puddles around. And obviously you’re all picking up on this much faster than we did. But we’re good in an emergency. Trust me, we are. Well, she is. I’m useless. What a shock.

So we notice that The Boy has a matching wet spot on his pants. I say, “Jeez, lady, when’s the last time you changed his diaper?” Which, yes, conveniently ignored for the moment the fact that nothing had stopped ME from personally changing his diaper.

I lift him up and his pants immediately fall and get stuck on his shoes. Turns out the diaper dropped down with the pants. Which means that, when his shirt rides up a little bit, his winky gets its first look at the world.

Top Management and I both burst out laughing, because she believes in solidarity and at a time like that it’s rude to let your husband be the only one with a thirteen-year-old’s mentality. Besides, it’s really funny when a baby’s winky suddenly pokes out in public. That’s not opinion. That’s simple fact.

The Boy’s amused, of course, because he’s being held up in the air and both Mom and Dad are making a big fuss about…well, SOMEthing, how’s he supposed to know what? So as usual, he assumes it’s about him. Which I guess it was, sort of. Or at least parts of him. Part of him. A little part.

Just then a breeze whips up. And the expression on The Boy’s face changes. Instantly. What had been mild amusement turns into a look of “What the heck is THAT?” as the wind tickles parts previously unused to any kind of weather conditions whatsoever. He turns to look at each of us, eyes wide, clearly thinking, “Seriously, what IS that? Do you know? Do you? Do you? You do? You DO? How long have you known about this? And what can I possibly do to get that going again?”

Howling with laughter, and much to The Boy’s disgruntlement, we head into the house to get him a new diaper and a change of clothes. And Top Management realizes that the neurosurgeon The Boy had seen earlier had taken off the kid’s diaper in order to look at his Unusually Protruding Tailbone (which, yes, needs to be snipped off) and had apparently not done a terrific job of redoing the diaper’s tape.

Which kind of gives you pause. This is one of the top pediatric brain surgeons in the world. Yet he seems unable to master the intricacies of Huggies. Are you sure this is the guy you want poking around your kid’s horned ventricles?

Turns out he indeed is. And I guess it just goes to show that we’ve all got our little areas of special expertise. For some of us it’s fixing toddler brains. For others it’s…well, for my part, I haven’t quite gotten that one sorted out just yet. But I’ve a feeling it’s going to be more along the lines of knowing how to secure a diaper properly rather than slicing and dicing someone’s innards with precision. Hey, it takes all kinds.

All About Wonderboy

Our Ongoing Unit Study on the Brain (as Taught by Wonderboy)

Wonderboy had his OT evaluation today. Our marvelous physical therapist, M., brought an occupational therapist, K., out to meet our little guy. I don’t know about Wonderboy, but boy was I exhausted when it was over. (Actually, he conked out even before they left, while they were writing up their notes.)

Watching his responses to various sensory stimuli and activities, I couldn’t help but marvel at the complexity of the human brain. Wonderboy’s brain abnormalities manifest in high muscle tone, irregular vestibular function, and gross & fine motor delay. What amazes me is how intricately everything is linked together. His sensorineural hearing loss contributes to vestibular problems, which contribute to gross motor delay, which is (in part) why he can’t yet, at fourteen months of age, crawl or transition from lying down to sitting and vice versa. But then again there’s the muscle tone issue which makes it hard for him to lift up his head from the tummy-down position, and babies with hearing loss hate to be cut off from visual contact with their parents. Another strike against crawling—and crawling helps a baby’s vestibular system develop properly, so it’s the chicken and the egg. Everything linked, everything working together to make motor function a challenge for this kid.

But the human brain is like a stubborn old man driving his car—no point in telling him “you can’t get there from here.” If the road is closed, he’ll just keep driving around until he finds some obscure, winding, unpaved back road that—eventually, after a tooth-jolting ride—gets him to his destination. Wonderboy’s brain hasn’t figured out crawling, and when you pull him to his feet he walks with a step-drag sidestep, but by golly he’s determined to move.

That determination, that drive, is what blew me away today (as it does so many days). Seriously, babies are my heroes. They push and push and try and try until they succeed—or fall asleep from exhaustion. Now there’s a work ethic for you.