Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, January 27, 2008


I am so tired of this word. "What?" We all hear it from our kids at one time or another (multiple times per day) but I hear it from Angela about every 10 minutes because...well..she really can't hear me!

When Angela was 11 months old she was diagnosed with the type of hearing loss that is most common among kids with DS, a moderate, sloping, high frequency, bilateral sensoryneural hearing loss. She was fitted with hearing aids which she barely tollerated, and which we fought over until she was 3. While wearing them she seemed scared to death of any sound she herself made, and would stand in the middle of a room petrified by the world around her. So we ditched 'em, and our happy, chattering Angela came back. That didn't seem right to me, and I knew that Angela's aids were not programmed appropriately for her loss and were providing too much amplification, but the audiologist assured me they were just right. Gee, I worked with hearing aids every day, and never had a seen a kid react like this.

Fast forward to kindergarten when we decided to try the aids again. This time they were tolerated (most of the time anyway) and worked great. In 1st grade we added an FM system (this is where the teacher wears microphone, and her voice is brought directly to the student's ear, eliminating all the background noise.)

Then came that dreaded 2nd grade year, which Angela spent most of in the hospital...without aids. When it was time to start wearing them she refused. It took months for her to keep them on, and she never did at home. Much to the complaint of our insurance company, Angela managed to destroy two pairs of very expensive aids ( about $15,000 worth).

Now she's in 5th grade, and has been consistantly wearing her school aids for 2 years, and tolerating them quite nicely. She reminds teachers to turn the FM system on/off (when they forget to turn it off she gets to hear things she doesn't need to, like toilets flushing, or adult teacher-teacher conversations!). So, we're looking at new aids for home because I'm getting really tired of hearing "What???" all the time, and her speech is getting more difficult to understand. This became particularly evident over Christmas vacation. After 2 1/2 weeks of no school (and no aids) we were having a horrible time understanding her. Then the school audiologist did a re-check, and Angela has lost a tiny bit more hearing. Her assessment included a little note about "hearing aids are strongly recommended for home use."

Ok, ok, I'll call the insurance company again. Gee, so far this year they've paid for two pairs of glasses within 3 weeks, I'm sure they'll love paying for aids again. They have a rule about 1 pair every 5 years, and it's only been 3 since Angela got her last pair, so I doubt they will agree to pay, but there's always that slim chance.

We think that Angela will be more accepting of an open hearing aid. These have only been on the market for a couple of years but were designed for just the type of hearing loss Angela has. The aid itself is much smaller than any she's had before, and the isn't a chunky ear mold. Just a tiny piece that sits inside the ear canal. If the insurance company says yes, I'll only have to hear "what?" about half as often as I do now.

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