Blogging about life in Minnesota, raising our five 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!"

Friday, April 11, 2008

Busted!


When Angela was 11 months old she was diagnosed with a mild, bilateral, high frequency, sensorineural hearing loss. Let me put that to you in English. "Bilateral" means both ears. "Sensorineural" means that the loss will not be improved by putting in ear tubes because she the actual auditory nerve is damaged. You cannot fix the auditory nerve. And "high frequency" means that in the speech tones, she doesn't hear things like sh, s, f, h, ch,k, p, b, t, d, th,. So if you were to take a sentence like "Did you put your socks on yet?" Angela will hear something like " i you puh your ah on yeh".

And so, at a year old, Angela was fitted with her first set of hearing aids. She wore them really well until she was 3 years old and it was time to start preschool. She acted as if she was afraid to make any noise herself, and she would stand in the middle of her classroom afraid to even take a walk around the room. Take her aids off and she was a happy camper, bee bopping around like everyone else. We decided to forgo the aids for a bit.

When Angela was starting kindergarten we went back to the aids and she tolerated them much better, as long as she was at school. At home she wanted her aids off and would go to great lengths to hide them all over the place.

In second grade we discovered she also needed glasses, and THAT is when we found out how tiny her ears really were. We'd always had a tough time getting a good fit for her hearing aids, but add glasses to the mix and it was a disaster. Her tiny ears couldn't support both an aid and glasses. Finally, in a last ditch effort, we petitioned the insurance compay to pay for tiny in-the-ear hearing aids. These aren't usually done for small kids because they have to be rebuilt on a regular basis as the child's ear canal grows. Fortunately the insurance company approved them. Unfortunately Angela didn't have them very long before she fed them to one of the dogs. That was the end of hearing aids at home for awhile. She still wore them in school, but I gave up at home, even though Angela's hearing had changed and had gone from a "mild loss" to a "moderate loss", meaning aids were even more important for her.

Last fall my nephew AND my father in law were fitted with new aids. They're the new "open fit" aids, which are much smaller and much lighter than the aids commonly worn until that point, and are nearly invisible. They're also ideal for Angela's type of hearing loss. Dean and I talked about it a couple of times, but really felt we'd be pushing our luck buying yet another set of aids, and it was likely insurance wouldn't cover them yet. (insurance only pays for them once every 5 years.)

The phrase "Ignorance is bliss" fit us well, until Christmas vacation rolled around and we realized just how bad Angela's hearing was. Wearing her aids every day in school she does fine, but when there is a long school break and she's un-aided...well..there was a DRAMATIC difference in her speech. We could barely understand her.

In March (I know, I'm slow) I finally got around to ordering her new aids, which brings me to the title of my post. On Wednesday Angela and I went to pick up her new aids. Since she's never been very tolerant of them at home, I've been talking them up for a couple of weeks. She had some complaints while they were being fitted, and we have to go back next week for ear molds that we were hoping to not need, but she seems to be doing well with them.

Last night I was in the kitchen sneaking a spoonful of fudge topping from a jar in the fridge. (I hope my Jenny Craig counselor isn't reading!) when I hear a voice coming from down the hall, "What you having?"

gulp

"Ummm....just getting stuff ready for dinner. Are you hungry?" Angela walked into the kitchen and looked from me to the fridge, and back again. Then turned and walked back out. I think she was trying to decide if she'd REALLY heard me in the fridge or not! LOL

This morning we reached a milestone. In 11 years of inconsistent hearing aid use, this has never happened. While getting dressed for school Angela came to find me, "Don't forget my earring aids!"

3 comments:

WheresMyAngels said...

That is wonderful! My daughter Mercede also has the same type of moderate hearing loss. BUT, for the last three years, I can't get her to wear her glasses, she breaks them in a day. So I have decided that we will not do the hearing aides, until she learns to at least wear the glasses that are thousands of dollars cheaper! I don't have any issues understanding her speech, she just talks louder than I would like for her to speak. Although I bet her speech would be clearer with hearing aides. I'm also surprised your insurance covered them. I have been told that most insurances won't.

greyhairgeek said...

I was really interested in your story, because Joshua has a hearing evaluation next week. I'm glad you finally found some aids that Angela is comfortable with. I won't tell anyone about the fudge topping.

LeeJo said...

Thank God you are paving the way ahead of me on this hearing aid, glasses debacle. I may need you on speed dial!