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.