Thursday, January 24, 2013

Liam's Left Ear

Liam on his October field trip to the pumpkin patch with his class

I think I blogged about Liam's right ear when we implanted it last year. He has little or no bony structure around his cochlea, so the implant floated out into the internal auditory canal where it ended up on his vestibular nerve. When that was activated, he lost all control over his body. That meant he needed to be explanted and then re-implanted to try and get the device to stay put. Because he doesn't have full cochleas and there was scarring from the first surgery, Liam only has eight out of twenty-four functioning electrodes in his right ear.  Clear as mud and up to speed with me now?  Okay.  Oh! And for the parent who is considering implanting their own child and is now reading this brief synopsis in complete horror, please note that Liam's anatomy is incredibly rare. I mean, like, freakishly rare.  This is not something that will likely happen to your child. Really.  And, in all honesty, I'd do it all again even knowing what I know. That's how much of a difference the cochlear implant has made in Liam's life. 

Even with only 8 working electrodes, Liam is making progress by leaps and bounds.  He has found his voice and his language and he is using it.  He is still difficult to understand out of context and struggles to be part of conversations that typical children his age can hold, but he is trying. His light bulb is on and he is working toward finding his way.

Because of his success with even a not-so-great implantation, his audiology team has been eager to implant the right ear for at least the last nine months.  We've been holding off for financial reasons and to look at our options.  Our ENT has found a specialist at NYU who has successfully implanted at least 6 other kids with rare anatomy similar (but not quite the same) to Liam's.  This doctor has created a method that will allow him to get all the electrodes in AND hold them in place.  There has also been some speculation that he might be able to explant the currently implanted right ear and redo the implantation to get even more electrodes in there.  The catch? We'd have to go to NYU to do it.

Liam's audiologist has been gently nudging me to just send off his scans and reports to this doctor just to see what he says. Who knows? Maybe he'll look at them and say that our ENT here did about as good a job as can be expected for Liam and tell us to stay put and just do the best we can to implant the left ear. We just don't know.  Well, we say that. The audiologist is pretty confident that this particular specialist will be able to do wonders for our little dude.

I finally relented and had the scan sent.  They tell me the doctor received them last week, and should be calling us to let us know what he's found.  It's a little nerve wracking. I know I want the best for him, but my heart just has all those "what if" questions in there.  Thank goodness for faith that things work out according to a higher plan!

And so we wait. And save our pennies. We're going to need a lot of them to get it done, but the plan is to have this little guy with hearing in both ears well before the end of this year. 

1 comment:

  1. Oh that's so exciting! And whether he says to come to NYU or to stay put, at least you'll know you're doing the best you can for Liam. Keep us posted!

    Julie G