Category Archives: All About Wonderboy

All About Wonderboy

The Deliciousness of Mah

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.

All About Wonderboy, Family Adventures

All About Wonderboy

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He is 13 months old and has had his hearing aids for two months. His hearing loss, diagnosed last fall, came as a surprise to us—we spent his first nine months focused on various and sundry other medical issues. First it was the omphalocele, discovered immediately after birth: a small section of intestine had herniated into his umbilical cord. He was rushed to the university hospital, where our favorite surgeon in the world tucked his bowels back where they belonged and custom-stitched him a belly button. (It’s a beauty, too.)

Then came the string of new and alarming discoveries: seemed like half the departments in the hospital had something to say about our boy. Cardiology, genetics, neurology, neo-natal…plus a couple of others who were able to cross him off their lists, thank goodness. The next six months were an adventure of appointment-juggling, full of surprises. In March, a second surgery. In April, he was diagnosed with hypertonia (high muscle tone) and developmental delay. Wonderboy’s physical therapy became our new family pastime. His sisters are a big help with the homework.

An MRI in June showed specific types of brain abnormality but offered little insight as to what to expect in terms of future mobility. PT has worked wonders, but there is a long way to go. He’s a tough little guy, and his physical therapist is a gem–a gentle, patient soul with a wonderfully warm manner. Wonderboy loves her even if he doesn’t always love what she makes him do.

Just about the time we were getting a handle on the PT, we began to be concerned about his hearing. More tests, a surgery to insert tubes, yet more tests—and finally confirmation of what we already knew: he is hard of hearing.

Now that he has the hearing aids, he can hear everything we say to him. We’re teaching him how to make sense of it. Sign language helps, so we’ve all immersed ourselves in the study of ASL (American Sign Language) and I’m not sure which one of us loves it more. My shy Rose blooms when her hands can do the talking—she loves being able to tell me something without opening her mouth. Beanie is learning to fingerspell before she can read. And Jane is burning with an insatiable need to know WHY each specific sign is what it is.

The first time Wonderboy signed “Mommy” I thought my heart would burst. Now he says “Maaaa” and that’s just as magical. He enchants friends and neighbors by studying their faces when they speak, those big eyes serious and fascinated, a little smile quirking the corner of his mouth. And I think there can be no audience in the world more satisfying to sing to than a hard-of-hearing baby. His spellbound gaze says I’m the wonder, as if I’ve somehow invented this marvelous thing called music all by myself.

I think the real wonder is how God works it out: the child with hearing loss teaches me how to listen; the one who can’t talk yet has the most profound things to say.