Friday, November 20, 2009

It's Official.

Harlie has moderate hearing loss.

There. I said it.

I am definitely bummed. Disappointed. Frustrated. Ugh.

I see the good things. We know. Therefore we can address it appropriately. And it certainly explains our difficulties with her behavior. And they do make hearing aids. And it's moderate loss - not complete loss. I am thankful for all those things. Trust me.

But c'mon! When am I going to stop learning about stuff that doesn't work right? And now I have to learn a whole new body part and all the details that go into how it is supposed to work, and why it doesn't work with Harlie. And there will be more appointments, more specialists, and more equipment. Super.

Yes, I'm whining.

For some reason, I really believed that she would get the tube, and that her ABR test would say she was perfectly fine. I really did.

But I guess that was more hope than belief.

So, here were/are my questions...

How could she pass the newborn hearing test with moderate loss? The newborn screening test is supposed to catch that.

Did they do the test - or was that incorrect information? Those first weeks were very busy and very crazy. Maybe it just got lost in all the flurry of tests and surgeries?

If they did it, was it done correctly? If so, did she have good hearing then, and it progressively got worse? Why? Could it continue to get worse leading to complete hearing loss?

Is this loss conductive or sensorineural? Or a little of both?

Most of my questions will never be answered. Nothing new, really. That seems to be the case with so many things about Harlie.

The audiologist that performed the test will get me a full report soon. Then I can read more about the specifics of her hearing loss. I think she said that she showed some sensorineural loss (which is damage to the nerves and is a permanent loss). But, I can't remember exactly what she said. We covered a lot of information in a short period of time. The report will really help me process all of this.

The good thing is that she said a regular hearing aid worn on her right ear should help her a lot. We'll have to get her a BAHA on her left - and we have to wait till she gets bigger for that. They anchor it into the skull, so the skull has to be a certain thickness.

So, I read this and wow, is it easy to get depressed over this!

But I won't. I can't. I need some time to process it, of course. Learning that your child has a disability is never easy. No matter how many things I've gotten over, I don't think it gets any easier. But, she's been receiving speech therapy since she was 14 months old. And we started using sign language at 16 months old. So, it's not like we haven't been addressing her language and communication challenges.

I will say that my faith in her intelligence is restored. With all of the issues we've had with her not cooperating, following instructions, etc. I was starting to doubt her capabilities! But, the fact that she's had three wonderful speech therapists in her three years and we didn't realize that she had hearing loss, speaks for her intelligence. She's been able to figure things out using other means, keeping the fact that she couldn't hear under the radar.

I think part of my struggle with this news is that I thought all along that she had one good ear. I can't tell you how many times I have thanked God that she could hear. Even after her ABR test last summer (which also showed moderate hearing loss - but the audiologist said that if she had an ear infection, that could affect the results and she did have an infection and a granuloma had grown in her ear canal - so OF COURSE that was the reason for her poor hearing results). If I had gotten her another ABR test after her ear healed and a new tube was placed, we would have known sooner. She could have gotten a hearing aid MONTHS ago and who knows where we'd be now.

I don't know what she hears when we speak. And that bothers me. What do we sound like to her? Do we sound like the teacher in Charlie Brown? What does the world sound like? What does music sound like? Does she even hear the narrator in Curious George (her absolute favorite tv show)? So, now I don't know what she sounds like, and she probably doesn't know what I sound like. That makes me so sad!!!!

Hopefully a hearing aid will help all of this. Maybe that will make me stop being a big baby about this. I just hate that I didn't know. And when given a clue - I didn't believe it. Granted, I think I had good reason not to believe it. But, still.

Here's my post from a few weeks back when she had the regular old hearing test that showed moderate hearing loss (that I still didn't really believe) with a video to show what it might be like for her.

Oh my. I just looked up my old post from when she had the ABR done last summer. It said she had MILD hearing loss. And that was WITH a blockage in her ear canal! What does that mean???? Does that mean that her hearing loss has been progressive?

Oh no. I gotta stop thinking about this for a while.


Janis said...

Christy, So sorry the results were not more favorable. I guess because I have BTDT, I am not really too surprised about the Microtia ear. But yeah it sucks. On the bright side you are way ahead on the sign language. My one question is why not get here a BAHA (Intenso) Softband like Austin for now. Waiting another two years is crazy. Did they discuss that option? ((HUGS)) Ok I guess I have one more question and that is regarding AVT therapy or a DHH teacher. This is totally different from Speech. A DHH teacher could teach you (the parents) how to deal with aspects of her hearing loss such as creating a language rich environment etc. i am sure you don't want to think about all this for now...but let me know if you have questions.

Sue Mitchell said...

Hi christy, I'm sorry you didn't get the results you were hoping for. But, like you said, the prognosis is "moderate" and not "severe" or "complete" so we have to take that as a positive, although I'm sure it will take awhile for you to think of it as a positive. You're certainly entitled to be sad, mad, upset, all those things and we're here for you. Always remember that.

Take care,

Natalie said...

I am sorry to hear about the results. I know this must feel like a sucker punch...but you'll get up again. You always do. I'm here for you! Call or write when you need to vent or connect. Thinking of you, Natalie

Kim said...

If that's whining, you're out of practice. You can whine more than that. And you should. So. Totally. Not. Fair. For you, the family and especially for Harlie. A much louder, bigger whine (or perhaps a true b*fest) would have been more appropriate for this situation.

That said, you know Harlie, and she will surpass everyone's expectations. She is a bright little girl who compensates mentally for so many things physically. Like so many other things, she will conquer this, and it will be because of your support that she does!

Ann said...

Christy, my advice, for what it's worth -- is to not beat yourself up over the "should have, could have, if only". You spend 110% of your time making sure Harlie is getting the best care and the best services. I hate to break this to you, but you can only do so much! And as much as I understand your worry and sadness over what Harlie may have "missed" during these months of not hearing as well as she might have with aids -- Harlie doesn't know any different and Harlie is happy and Harlie is thriving. Take a minute and pat yourself on the back (or allow me to do so) because you are the BEST mom Harlie could ever have. Sometimes, you just have to put all the "information" aside for a day and simply enjoy the moment.


Susan said...

I'm sure it's hard to look at things this way but I think this is good news. Because it explains a lot. And she's managed so well I think she is going to knock our socks off when she gets the aids. And we are talking months between test, not years. It's been caught and she's only 3 and already signing. Perhaps the ear infection last time influenced the way they "graded" her test. I don't think it's progressive loss.

As far as feeling crappy about adding another specialty... Allow yourself to feel sad and angry. You already have so much on your plate. You are a great mom! Hugs.

Rene said...

I'm sorry you have one more thing to add to your plate, but looking at the big picture, this is no biggie. She's been able to hide hearing loss for 3 years! Harlie is super smart, she will be picking up and repeating things in no time flat once she's fitted for her aid. Can't she see her ENT for the hearing loss instead of adding another specialist? Just curious.

Hang in there!

Tracy said...

So sorry to hear about the test results.Hopefully with some more testing they can give you a better idea with what Harley is dealing with right now.
I know I'm always learning something about my daughter too and I took know the feeling of " what now? "

Karin said...

I'm sorry I missed your post earlier. I was looking for it, because I was eager to know the results. This has got to suck for you. I don't know what it feels like to be told your child has hearing loss, but I do know what it feels like to be told your child has a disability you didn't believe he had and ignored. Been there, lived that. You whined way less then I did.

Please try and remember what we talked about -- the story about my mom. Don't beat yourself up. Maybe, no matter what you did, you wouldn't be any further ahead then where you are right now. It's only been a few months, and you've been busting your rear end to schedule all these things as it is. I honestly don't know how you could have finagled anything else into the mix. I really, really don't.

I loved meeting you in person. Let me know when you are back up here, and certainly let me know if you guys want a detox before you drive home.


Allie said...

Just remember the jungle gym photo.

leah said...

Sending electronic *hugs.* You can request a copy of her newborn hearing screening test (we did this for my older son when our little one's hearing loss was diagnosed). The best thing is that you have found it, you will be able to aid the loss, and even if the worst case scenario for hearing occurs (progressive hearing loss), there are lots of technologies out there that let kids hear sound (we have a few friends with cochlear implants).

I would definitely look into getting a TOD (teacher of the deaf, also known as a hearing itinerant).

Alicia said...

I am an audiologist who stumbled across your blog after doing some research for a presentation I am doing on Goldenhar.

I work specifically with children. It sounds like you have many questions and I suggest that you call your audiologist to speak with them and address all your questions and concerns.

Some audiologists are guilty of providing a lot of information at diagnostic appointments a lot of which is confusing because all parents tend to hear is "HEARING LOSS".

It is important to remember that hearing screening is just that a screening. It can not pick up 100% of hearing losses. Also it will not pick up or predict any hearing losses that may arise later if life due to structural issues or progression.

I agree with everyone else on here, enroling your daughter in an early intervention program (usually has a team of SLP and teacher's of the deaf).

Good luck,