Hearing Aids

Last year while I was in Serbia for Asher's adoption, Angela lost one of her hearing aids. *Someone*, who shall remain nameless but who was the responsible adult at home with the kids, didn't even notice that one was missing until I got home and pointed it out. AHEM! Anyway, we waited over a year for her to get a new pair.  She hasn't been completely without hearing aids, since she had hearing aids plus and FM system at school. She could have worn one hearing aid but if you've ever had a problem with hearing out of one ear you know that it's very difficult to localize sound when you only hear out of one side.

Anyway, we finally got her new aids!

Years ago, when Angela was 12 months old, she got her first set of hearing aids. I was still new to this world of differences and didn't want anything that would make Angela stand out more than she already did, so I chose skin-colored aids with skin colored ear molds. A few years later we switched to dark purple ear molds because they're easier to find when they come off the hearing aids! (and note to those who are new to hearing aid usage, DOGS love hearing aid ear molds too, and eventually insurance stops paying for them when your dog eats them. ;-) 

When Angela got a bit older I started letting her pick the color of her ear molds. She's had lots of different colors over the years; always bright and and bold! This year, since she is 17, I grit my teeth and swallowed my tendency to take control and let her pick her own hearing aids. I really wanted to encourage her to choose something less..umm...flashy, but I held my tongue. After all SHE has to wear them, not me. And really, I've been letting her choose her glasses for a couple of years now. 

Purple hearing aids on the left and purple with SPARKLES

 ear molds (the part that goes in the ear) on the right. 

To give you an idea of size, the ear molds are about the size of a nickel.

Checking the fit of the ear molds and cutting the tubing to the right length.

Angela has teeny tiny ears (the size of a 6 month old baby!) 

Her new aids are so tiny they hide right behind her ears. 

The wires lead to the computer program.

Years ago hearing aids were only able to amplify ALL sounds, so even sounds a person could hear well without aids were made louder, making hearing aids sometimes not very pleasant. About 8 years ago digital hearing aids came on the market. The computer chips in them are much smaller, allowing for smaller hearing aids. Here you see black wires connecting Angela's aids to the computer. The computer programs the hearing aids to amplify ONLY the sounds 

Angela can't hear. If her hearing changes (which it has in the last year) we can reprogram the aids accordingly. 10 years ago we would have had to buy entirely new hearing aids. 

The Audiologist ran some test sounds into the aids to see if Angela 

could hear them and make sure they were programmed correctly. 

Into the booth we go! Time to see how much better 

Angela hears with her aids than she does without.

Our Audiologist, Wendy, has been part of our family for 10 years now. 

We love her! Thanks Wendy!

Angela's New Aids

A few of my internet friends have young kids with DS who either already have, or will soon be getting hearing aids. As mentioned in a previous post, I've spent many years caring for other kids' aids before Angela came along. Isn't it funny how God prepares us for things, by giving us skills we're going to need later on? LOL

Anyway, Angela's new aids came a few weeks ago. Hers are open fit aids, and usually they don't need an ear mold. However, kids with DS usually have such tiny ear canals that fitting domed aids can be difficult. So we went with the newer, smaller ear molds. In 11 years this is the first set of home aids (she wears different ones at school) that she has tolerated!

Open fit aids are the "latest and greatest" when it comes to hearing aids. They're specifically designed to address mild/moderate hearing loss. They provide better sound, less feedback (that high pitched squealing noise that aids make when they're "leaking" sound.) and are easier to program than older models. They're also much smaller, which is really nice when you're trying to fit the tiny ears that kids with DS often have.

The new aids can be ordered either flesh colored, or in a variety of colors. We chose flesh colored aids, and bright pink ear molds. In the past we've always gone with clear molds that are pretty much invisible, however the colored molds allow me to see AT A GLANCE that Angela's aids are in her ears. This is especially helpful when we're outside (makes me cringe, having her wear her aids outside, but hey...she can hear the birds with them on!) or in other situations where she's apt to either loose them or ditch them on purpose. If you're dealing with a toddler the same would be true. From across the room you can see that the aids are in the ears where they belong! Here's a picture of Angela's new aids and molds.


When Angela was little her ears were tiny and very soft, and had a difficult time supporting the weight of her hearing aids. (they were much larger and heavier then.) Huggies are silicone rings that come in a variety of sizes. They fit around the ear to help the aid stay on. If you look closely in this picture you can see the huggies and the string from the critter clips on Angela's ears. Also notice the dark purple ear molds. (by the way, those earmods were about the size of a dime, and I still have them!)


Another tool to prevent loosing aids is to use otoclips. The concept is similar to pacifier clips. They come in cute little designs and can be easily fastened to your child's clothing.


The Phonak company also sells a "kidsclip" which is the same, just different. LOL


Ok, so you've just found out your child needs aids. THEN you found out your insurance doesn't cover them. THEN you found out how much hearing aids COST!!! (anywhere from $3000-6,000 PER EAR!) Where do you go now? Go to visit Hearing Mojo, and read all the information there. They will guide you to America Hears. This company is owned by the former employer of a family member of ours. He got sick of people not being able to afford hearing aids when their insurance won't cover.

I hope some of you will find this information helpful. Feel free to contact me privately if you're still feeling stuck, or need tips and tricks to keeping those darned things on your kid! I think I've tried everything! LOL

Sweet Nothings In My Ear

Terri, over at Terri's Special Children Blog posted about an upcoming movie. Being an interpreter, this one is close to my heart, and a struggle I've seen played out in many families.

"Sweet Nothings In My Ear" is the story of a couple facing a difficult decision. Suppose your child was deaf, but could have an operation (not without risk) that could make him hear again?

Dan Miller (Jeff Daniels) and his wife Laura (Marlee Matlin) only wants what's best for their happy and healthy 8 year old son Adam, who's been deaf since age 4. Laura opposes the surgery - a cochlear implant. Being deaf she doesn't consider it a disability, and believes an operation, regardless of outcome, would make Adam feel that something was wrong with him. However Dan, who can hear, misses talking and listening to his son. For him and operation is worth the risk, believing Adam's life would be easier and more complete if he could hear.

This is a devoted family facing a moment of truth. Together or apart, Laura and Dan must make a life altering decision on behalf of their son. You won't want to miss this powerful presentation from the Hallmark Hall of Fame on Sunday April 20th, 9/8c on CBS.

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!"

What???

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.