Thursday, June 23, 2011

Hearing Appointment

Last night I capped her while she was sleeping.  She did terrible.  She clearly had difficulty breathing - and sometimes just stopped for a few seconds.  And it sounds like she was snoring really badly.  That's the sound of her upper airway occlusion - the base of her tongue.  So, I am seriously considering just skipping the whole sleep study thing.  Because if that's what she's going to do - it would be a big, fat waste of time and effort.

I'll deal with my disappointment later.  I don't have time right now.  And if I wait long enough my hope will somehow be restored.  I have no idea how that happens.  I just know it does.

Today we had an appointment with Harlie's audiologist.  This was our first time seeing her in months (since before her spinal fusion surgery).  We tried the bucket game for the first time.  Harlie wore headphones (with no hearing aid) and every time she heard a sound she had to drop a toy in a bucket.

Ann teaching her how to play.

On her own with headphones.
I was a little worried when her audiologist had to go and get some help.  Ann stayed in the sound booth (the quietest place on earth) with her while her co-worker worked the sounds and microphone.  I guess Harlie didn't feel like playing any of their games today.  It's difficult to tell if she couldn't hear, or just wasn't motivated.  The thought went through my mind that maybe her hearing is getting worse.  I'm afraid that is not news I could handle very well right now.  But Ann said that she didn't think it was any worse than before.  Whew!

They adjusted the volume in her hearing aid, making it louder for her.  I really hope that's not a bad sign.  Ann said that we had to adjust it slowly in the beginning because she wasn't used to hearing that well.  But now she's gotten used to it, so it's normal to have to increase the volume.

We talked about a bone anchored hearing aid (BAHA) for her left ear (the one that's absent).  She tried to test her with one, but by then Harlie was over the whole thing and said she was "all done" and that was that.  So we'll go back soon and start with that test.  Here's a picture of a BAHA (which has to be worn as a band until she gets old enough to have the device implanted in her skull):

The band would totally mess up her whole bow thing she's got going on.  But, I guess if she hears better, we need to consider it.  So, we'll see what happens there.

After that appointment, we had speech therapy.  I've been wanting to tell you about that, but can't finish that post right now.  So check back soon for that post!  It's pretty exciting!



Susan said...

Don't give up hope Christy. It may be that another jaw surgery is all she needs.

I hope you can get answers about her hearing. If she does end up with a BAHA maybe you need to design your own bands with bows. :) I bet that could be pretty cute!

Anonymous said...

wear the bow on the band. all you need to do is attach it to a bobby pin or larger barrette. She will be so stylish!!! I bet the band comes in many colors to match her outfits too.

Jenna said...

My name is Jenna and I came across your site. Harlie is an amazing, beautiful, courageous, strong and determined fighter. She is a brave warrior, smilen champ, inspirational hero, and such a great super trooper. I was born with a rare life threatening disease. I had 12 reconstructive surgeries on my jaw, then I finally had a implant operation on both jaws, after the 12 operations before that. I have had 29 operations so far. I love it when people sign my guestbook.

Janis said...

You have no idea how many times I wished Austin was a girl...a bow on those headbands would ROCK!!! Austin has a bilateral BAHA and he actually likes to wear it, like anything it takes getting used to. <3