Monday, April 11, 2011

He Hears!


Wearing his left processor and hearing again!

Heading out the door for school.

Great news! Ethan is hearing again! He's not necessarily showing evidence of hearing in day to day situations, like looking at you when you say his name, or even when you say something like "ice cream", which at one time would have elicited a huge response. He tested well in the booth though (down to 30 db) and is showing an interest in saying new words on occasion. He's not "talking", but now and then he'll attempt a word out of the blue and it takes us totally by surprise. It's basically like starting over. He was deaf for over 9 months, so I think he's rediscovering what sounds things make and what meaning is attached to the sounds of certain words. We are obviously still signing everything to him and he visibly understands us once we add the sign to the verbal message. The sign is definitely helping him attach meaning to what he is hearing, so it's a good thing he has such a solid ASL background.

Testing revealed that his right cochlear implant is no longer a functioning device. When the surgeon and audiologist left the OR to give me this news, the first thing I said was "that's great news!"....to which I think they agreed. We've had no idea why he was so adverse to wearing his processors and previous tests had indicated that there were issues with the right side, but the company that made his devices (Cochlear) told us that it passed the integrity test. That test yielded more questions than results and I was sorely disappointed with their assessment and lack of concern afterwards. We're talking about a patient who is nonverbal and basically unable to communicate when he's in pain, where it is coming from, etc. So our best guess is that he generalized the sensations of the failing right device to the left side as well and was fearful of wearing it, even though the left side has proven itself to be in textbook working condition.

With months of patience and the help of a team of autism professionals, we finally got him to wear the left ear again. The mapping process has not been going smoothly and our audiologist has had to resort to unconventional methods to create new maps since Ethan is completely uncooperative. The poor little guy has extreme anxiety around this process, undoubtedly the residual trauma from having the right side go down.

We're still not clear about what we'll do next. The team at Children's would like to see some cooperation during mapping sessions before they can commit to re-implanting the right side. That's completely rational, so we just have to keep working at reducing his fear of the process and hope that we continue to make progress, even if it's only in baby steps.



11 comments:

CW said...

This is great news, Heather! Ethan is a sweet little guy and I wish him all the best.

Corinne M. Coe said...

heather, it is with great respect and admiration that I read your blog. I applaud you and richard and most of all, ethan. love from port-au-prince, corinne

Anonymous said...

Love the hat, grandpa has a matching one. Sounds like progress is being made, slow but being made. Good job you guys.

dlefler said...

Great news on getting the left processor working again! I guess it would be back to square one with the listening skills - thank goodness he has the ASL background so that he didn't lose any language ground during that time!

He is so ridiculously cute. I can't believe how fast our little guys are growing up!

Lucas'Mommy said...

That's really great news! I hope he continues to make progress for you with his CI.

Kristina said...

I know this was a long, challenging, exhausting process to get to where you are today. I am hoping that Cochlear will be more supportive going forward - especially since we are also "married" to that company.

I am truly glad you are starting to reap some fruit after all your labor. Praying for continued improvements with time.

Kyla said...

Hooray! I'm so glad for him and you guys.

Do you think any of the behavioral issues were caused by his frustration without being able to hear?

tammy said...

such great news! One can only imagine having to go through a failure, none the less, one with a young child who can't communicate exactly what is going on. This is my biggest fear with Aiden. sending you hugs and hoping whatever is meant to be, will happen with the right ear.

Jenna said...

Hi Ethan
My name is Jenna and I came across your site. U are an amazing and inspirational Hero. I have problems with Anxiety, Change, Reapetiveness, and reasoning, my mom believes I have autism. i also have developmental delays and a rare life threatening disease.
www.miraclechamp.webs.com

Anonymous said...

Hi Hetha, How is ethan getting on hearing again? I bet your signing it pretty good now, I tried but Tom shows no interest which is frustrating!!

Thanks for leaving Tom a message he was really pleased and thinks Ethan and he look very alike :)

Nicky (Tom's mummy) xx

Aliki2006 said...

What a roller coaster! I'm so glad the left one is up and running again--glad for all of you. I'm sure this was so frustrating for Ethan (and for you both, obviously!).