Yeah, I didn't think so.   I had noticed Emmeline's volume had gone up a bit and I was having a hard time getter her attention when she wasn't looking at me.  So I decided that among all the other stuff going on with Emmeline right now, we should throw in a sedated ABR.  It seemed harmless enough.  Her hearing hasn't really changed in 4.5 years.  I was wrong.

When the audiologist came out of the she told me Emmeline gave her a hard time.  She was sedated.   I was not so secretly hoping their machines weren't really working or that somehow there had been some interference.  After booth testing today I found out I was wrong.

Emmeline lost quite a bit of her hearing in her left ear and some in her right, her now "not so good" ear.    What does this mean?

Here is what is called the "speech banana"  in order to hear normal spoken voice your hearing needs to be above the banana.  Or in other words it needs to be between 15 and 25 dB.  Emmeline's right ear falls at 50 to 60 dB at the low frequency and 40 to 35 dB at the high frequency.  This means she has moved from a mild hearing loss to a moderate hearing loss.
In her left ear she is at 95 to 105 dB across the board.  So in her left ear she moved form a low moderate to high profound.  If there is such a thing.
So, to make this a plain as I can for you.  My daughter can't hear me talk.  According to the test.  Now, that being said, she responds to me.  In the test they did a part where the audiologist asked Emmeline to point at a certain picture on a card.  Doing this she would point at the correct picture at 30dB in the right ear and 80dB in the left ear.  Even with those better results everything will now change.  
At the end of March she will have an MRI and CT of her ears.  After that we can figure out what steps need to be taken in order to get at least 1 of her ears hearing consistently over the speech banana.  She may qualify for a cochlear implant or a BAHA for her left ear.  There is just no way to know until we can see what her inner ears parts look like. My guess is they are a mess.  Her right ear should be able to be aided to above the speech banana.  

I feel sick.  There is a lingering question in my mind that no one can answer.  

Will/when will she go deaf?

When I ask, I get the sad smile.  I know I'm not the first parent to ask that or to get their sad smile.  I also knew before I asked what the answer would be.  The thing I HATE to hear.  We just don't know. I don't handle "don't know" very well.  I'm a doer.  I might not like it but I will and can do it.  But first I have to know what "IT" is.

I feel defeated.  We can have some great days, weeks and months with Emmeline and then everything seems to hit at once.  I totally realize how terrible this sounds but I have been looking forwards to having Emmeline's g-tube taken out since they mentioned she might need one.  I have had dreams and fantasies about what it would be like for 4 years.  Now it's here and all this other stuff is really ruining it for me.  This was not in my dream.  There that's my self centered rant.  I know what I want doesn't really matter.  What matters is Emmeline and figuring out the best way for her to communicate.  I can be a grown up.  I know I can...I hope I can.

1 comment:

Terra said...

I know you know it, but I'll go ahead and say it.

It won't be the end of the world if she can't hear.

Also...on the bright side you now know she wasn't just ignoring in an effort to break your spirit:)

she might be a bit gimpy but you've raised a happy little girl who has thrived these last few years (once you put the fear in to those Doctors.)

She smiles, she laughs, she runs, she plays, she certainly holds her own in this world and that's really what it's all about. Right?

AND on top of all that you've managed to make her pretty darn well behaved. Which is more than can be said about a lot of kids I've come into contact with.