Putting the Pieces Together

In all my confusion over the hearing aid, I posted a message on my atresia/microtia Yahoo! group discussion board: "Are those of you with kids with unilateral hearing loss using a BAHA?" Some parents wrote back saying "My kid hears fine out of the one ear so I figure why bother." Others wrote back "My kid has had a BAHA since she was four weeks old." One woman emailed me to say that her daughter is six years old and they recently started with the BAHA:

"We did not use a BAHA until 6 months ago - and she is now 6 years old.  Everyone told us how well she was doing, didn't need it, her audiograms in her hearing ear were all normal - and so we waited.  We wish we would not have waited (especially since we really did know better - but we were sort of in denial.)  As soon as she started school this year (she already has been in 2 years of preschool and Kindergarten) and began writing larger words we noticed her dropping of the endings, substituting letters, omitting beginnings and we took her to a different audiologist at another institution and she said, "didn't anyone suggest a BAHA?" 

Now she turns 7 in a month and with language acquisition kind of ending by age 8 - and more importantly the majority of it starts as a baby and ends at about age 5 (but don't quote me on that - you can google it) so - we are behind and it is much harder to catch up than it is to attack it head on.  When people write in that their child's speech is fine, no problems are being seen and other comments I am happy for them, but we never knew our daughter would have problems and now we can not take that time back.  Do we wish we would have started with a BAHA immediately??  ABSOLUTELY  And when we put it on her we could tell right away that it helped.  She became much more aware of noises and softer sounds - including the softer consonants in speech which affects reading, writing, all subjects in school. It took about 6 months for her to get used to the band, but now she doesn't even begin her day without grabbing the BAHA."

I found it very encouraging that it took them six months to get their child used to the BAHA. That sounds backwards. What I mean is, the fact that Charlie takes it off after half an hour does not mean it's a lost cause.

I asked that mom if she had considered the surgical option. "Yes," she said,"but we have to wait until after ear reconstruction." I hadn't thought of that. So I emailed Dr. Reinisch, the guy in L.A. who I think we're going to have do Charlie's ear some day. "Does it matter when you do the BAHA surgery?" I asked.

Dr. R. got back to me immediately by phone. He said that the BAHA company tells doctors to put the BAHA five centimeters behind where the ear canal is or should be; he says that puts it right in his way. He suggested putting it seven centimeters behind. Better yet, he said he'd do it himself, when he does the ear. FABTACULAR.

Meanwhile, Dr. Kenna still hadn't gotten back to me about my variety of hearing aid and double-ear-canal-ectomy questions, so I made an appointment to bring Charlie in. I think she should see the opening to the second canal in person.

And slowly but surely the pieces of the ear puzzle will all come together. 

Today Charlie wore the hearing aid during his morning "Karate Chop Turtles" program (a DVD of Teenage Mutant Ninja Turtles episodes that he bought at the consignment shop with the $4.00 his great-grandfather gave him for his birthday); during speech; and after speech while I read him a Charlie Brown Thanksgiving story book.

Comments

[Nowheymama]

Karate Chop Turtles! Excellent.

[Shaina]

That's really encouraging, i'm glad the pieces are falling into place! love you guys!

[jo]

That sounds like really great input! So glad people shared their experience, isn't the internet wonderful!

[Heather Z]

I'm glad you are getting feedback from people in similar situations to yours and Charlie's. As a teacher, I have thought about how the BAHA might help Charlie not just in language acquisition, but with emergent literacy and the letter-sound connections. It seems like it has really benefited the little girl whose mom shared her story with you. Another thing to consider, as you continue to be such a great advocate for Charlie.

Also- How great if both ear surgeries could be accomplished at the same time?

[AM]

Wow - Jill, that's awesome info! Even 30 min is pretty solid, Charlie will get more and more used to using it(not only that, but he's just barely 4 - loads of development left). Yeah Dr R. and having only 1 surgery!