Archive for the ‘Special Needs Children’ Category
Wonderboy has been dominating this blog lately. I realize he doesn’t exactly fit the mostly-literary theme I’ve got going here, but I can’t help it. Who can pass up material this rich?
This kid of mine, this kid of mine. What will he come up with next?
So Tuesday, as you know, was his surgery to repair a hernia (again) and remove his sticky-out tailbone that was making it hard for him to sit, poor guy, and was posing a risk of skin infection to boot. As I wrote in my last entry, the procedures went swimmingly and we got him home in record time. (Scott has a more detailed recap on his blog. But be warned: his language in this one is not for the kiddies. Don’t blame him. It’s the anesthesia.)
Yesterday morning Wonderboy woke up, turned toward me in bed, and smiled. “You seem to be feeling better,” I said. “Hey, buddy, maybe today will be a little more mellow.”
That’s when I saw the blood oozing out of his ear.
Just a little. A spot of red on the sheet, a clump of dried blood in the ear, and when I wiped that out, a bit of red oozing out of the canal. Had he just scratched himself? Or was it something to do with his ear tube? I couldn’t tell.
I called the doctor’s office and left a message for the wonderful new doc who is covering for our other wonderful family doc while the latter is on vacation this week. I love these folks. We’ve seen every doctor in the practice—numerous times—and they’re all great. Sharp, good communicators, efficient, cooperative. Plus their office is only three minutes from my front door. I can never move out of this house.
Anyway, I left a message for Dr. L. But I wasn’t exactly chomping at the bit for her call, because what was I going to do? Put Wonderboy in the car on his sore bottom? Even for a three-minute ride, that’d be torture. Mainly I wanted to see what the doc thought about putting in his hearing aid on that side. Not a good idea, I assumed.
All the rest of yesterday and all this morning, there was no new blood. Just a scratch, I figured. At this point in our parenting career, with the track record our kids have got, optimism is probably nothing more than gussied-up stubbornness, but what the heck. It works for me.
This afternoon when there was still no more bleeding, I decided to try putting in his hearing aid. Took it back out and—oh yes—there was new blood on the ear mold. That must have been one heck of a fingernail, kid, thought I (stubbornly).
Called the doc again. She was just getting off work for the day and asked if I wanted to bring him in tomorrow. “Only if you really think you need to see him,” I said. “I hate to sit him in the carseat so soon, you know?”
And then, in a turn of events more surprising than anything Wonderboy has thrown our way, she said, “Tell you what. I’ll stop by your house on my way home.”
Yes, folks, after all these years: our first house call. This is a momentous day!
She swings by with her trusty otoscope. Looks in his ear. Oh dear. Looks like the tube is not where it belongs. “Embedded” is the word she used. This is not good. This is not a fingernail scratch. This is, maybe, possibly, cause for another surgical procedure. WELL, YEAH, MAYBE NOT, insists the Stubborn Optimist. Scott speculates about the efficacy of a pair of tweezers.
It means, at the least, a trip to the ENT—whose office is forty minutes away. Wonderboy ain’t going for that ride anytime soon. We all decide that (barring more oozing from the ear) this little problem can wait until his rear end is sit-on-able.
“I’m sorry to be the bearer of more odd news,” says the doctor ruefully. Odd news: this is the perfect phrase for our boy. He is Odd News personified. Which I guess makes me the Bearer of Odd News, not Dr. L.
So that’s where we are. But, you know, for us it really WAS a pretty mellow 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.
It’s his best sign, because it’s his favorite word. His favorite person!
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.
Related posts:
• More about Signing Time
• Rilla Signs
• Unsolicited Signing Time Commercial
• Signing with Babies, My Favorite Topic
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.
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!
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.
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.
Wonderboy had new ear molds made last week. Ear molds are little custom-fitted silicone doohickeys that fit a person’s ear canal exactly and attach to behind-the-ear hearing aids. The actual hearing aids last for years, but a growing baby needs new ear molds every three to six months. Wonderboy’s current pair have started to fall out occasionally, so it was time to get new ones made.
Jane brought a friend along to the audiologist’s office to watch the procedure. The girls enjoyed watching the audi shoot goo into Wonderboy’s ears, one at a time—pleasantly blue goo which looked like gaudy swirls of cake frosting when she was finished. Wonderboy was less amused. But he’s a good sport and allowed himself to be distracted by our beloved infant hearing loss specialist, C., during the short wait for the goo to firm up. Then pop!, out it came, a perfect impression of his ear canal.
The impressions are sent to a lab, where they are used to make the new molds. Jane and her pal were dazzled by the choice of colors…didn’t I think he’d like purple molds, or maybe lime green? I opted for the faintly blue transparent kind–but they glow in the dark, so there was satisfaction all around.
I was unprepared for how much I would adore Wonderboy’s hearing aids. I love that he likes wearing them, fusses if I don’t put them in first thing each morning, tips his head expectantly while I check the batteries. They are officially my favorite form of technology, surpassing even this computer (gasp) and my propane fireplace (which is saying something—that thing draws me like a magnet).
I love that when I turned down the volume of the CD player in the car yesterday to field a question from the back seat, Wonderboy started calling out “Mah! Mah! Mah!” This is his all-purpose syllable; it means, depending on context: “Mom,” “More,” “Dad,” “Jane,” “Could you hurry up with those peas, please!” In this case, I understood it to mean, “Turn the music back on.” We were listening to the CD that came with our Signing Time videos. He knows the songs and wiggles his fingers while he listens, watching his own hand intently—his way of singing along.
“Mah!” he insisted, and I had to laugh at myself, because in my last Charlotte book I wrote a scene in which young Charlotte is inordinately proud of her baby brother for packing so much meaning into the word “Buh.” Well, maybe Charlotte was overreaching, but Wonderboy really is working to pack content into the few sounds he can currently shape. And he’s succeeding: that “Mah” speaks volumes. Driving down the road, I cranked up the volume, singing my own internal ode to hearing aids and ear molds.
Related post: Making ear molds