BAHA! (...and I don't mean taco's!)

At Andi's overdue ENT / Audiology appointment this past April, we met her new audiologist, Dr. Steve.  Dr. Steve tested Andi's hearing using her conventional 'over-the-ear' hearing aid that's she's been saddled with since she was 4 or 5 months old.  Just to point out, and over-the-ear hearing aid transmits sound through the ear, all the fluid, wax and seasonal allergy congestion she experiences... and actually all that diminishes the reception of sound for her.  Well, according to Dr. Steve, given Andi's middle ear hearing loss, the bone conduction hearing aid would better suit Andi's hearing loss needs, actually improve her hearing.  (Keep in mind, Andi is absent or has an incredibly small nerve on her left ear - so that ear remains unused, unaided.)

Bone conduction hearing devices. ... A bone conduction hearing device is an alternative to a regular hearing aid for those with problems in their outer or middle ears. It transfers sound by bonevibration directly to the cochlea, bypassing the outer and the middle ear.

Today, we met with Dr. Steve again with her Dad in tow, and we discussed what the bone conduction hearing aid using the soft band (headband to hold it in place) is, does, and how he thinks it will help her hear better.  After programming the device and putting it on, Andi went into the hearing booth.  He tested her using the bone conduction hearing aid and then again with her typical hearing aid.  The results were pretty amazing.  Now, I get most people aren't equipped to read audiograms like a CHARGE parent  (...just a perk, don't be jealous!!!)   

A = With the Typical Hearing Aid

B = With the Bone Conduction Hearing Aid

HINT:  the higher on the chart you score, the better you can hear.

So, we're doing a Bone Conduction Hearing Aid trial for 2.5 weeks, then we'll go see Dr. Steve again to discuss our experience.  Do we see noticeable improvement?  Do we want to stay with this device?  Do we want to move to the BAHA?  What's a BAHA?  A BAHA is a Bone Anchored Hearing Aid.  That means that they would surgically implant an anchor (basically a screw that send the sound directly into the nerve) and we would attach the device (after several months of healing - allowing the skin/bone to grow around what is basically a screw in her skull)... and if we were to do this, her hearing at the higher pitches would improve even more because it would have a more-direct-line of sound.  

RISKS:  Haven't spoken with the ENT/surgeon yet, but there are risks.  And what I've gathered from my fellow CHARGE families, main concern is an infection that will never go away.  The surgery is outpatient, and almost always covered by insurance.  Go figure, they won't cover a hearing aid, but they will a surgery?!  *insert eye roll here!*  But, we'd have to pay our out of pocket/deductible... but whatever.  The healing time is several months.  I imagine there would be some initial pain management to address.  Other than that - I don't know yet.  But let me tell you this.  Andi loves music.  I mean, she watches videos on You Tube all day long on her iPad.  She currently loves watching The Voice and anything that has to do with music.  Music helps her with speech, enunciation, listening, vocabulary -- good and bad... and it is really a motivator for her.  Today, as we left the ENT/Audiologist office for Day 3 of Summer Camp.  First, we stopped and listened in the parking lot. 

Me:  "Andi, do you hear that bird chirping?"
Andi:  "yes!"

Me:  "Andi, do you hear that car horn honking?"
Andi:  (almost repulsed)  "yes!"

Me:  "Andi, do you hear that sound that sounds like a motor running?"  (I honestly don't remember what it was...maybe a lawn mower?)
Andi:  "uhm, what's a motor?"
... parent fail... I  couldn't figure out how to explain it.  DOH!

In the car, before we even started our drive, I started crying.  I had to explain to her how excited I was for her and why.  To improve her hearing will give her such a better chance in this world.  There have been so many times where she just puts her hands up in surrender and says, 'Mom, I can't hear them." (the kids that won't play with her).  I was so overcome by the potential of improvement for her that I couldn't help but cry.  We put on some of her favorite tunes.  This Is Me from The Greatest Showman.  She absolutely lit up hearing more of the song than ever before. Then we went to our ol' Moana favorite, then onto Try Everything from Shakira... I honestly don't know what Disney movie that's from...  oops.

The difference was instantly noticeable.  

When I picked her up from Summer Camp, her device was in the completely wrong position.  I tried to reposition it, but there's a bit of a learning curve for me too.  All the way home I heard, 'What did you say?!'  It was gut-wrentching... but we've since repositioned it and she's learning about it, just as I am...  We'll see how this two & a half week trial goes, but one thing has already been reported, Dr. Steve - we believe you're genius.  Can't believe it's taken us 8 years to get to this level of hearing.  Failure on previous audiologists, if you ask me.

Will continue to report... wish her luck!