Monday, December 14, 2009

Hear, Hear

The not-at-all-secret BIG news in our house is that Emma now has two cochlear implants. I did a post on the surgery here. It seems like just yesterday that we were dealing with the multiple insurance issues, change of surgery date and trying to fend off the H1N1 virus! The surgery came and went without any complications, thank God, and we have kept quite busy ever since.

Truth is, our everyday lives are quite crazy with therapies, appointments, and extracurricular activities that I didn't realize how quickly the activation date would come! When we were waiting for Emma's first CI activation it felt like FOREVER between the surgery and the initial stimulation (activation) and I think this time, since Emma already was hearing quite well out of her right CI, the time went by much quicker. Which is quite strange since it was a 5 week wait for the activation vs. 3 weeks wait in 2008 with her first implant.

Waiting patiently before activation

On Dec. 7th Emma heard out of her left ear for the first time ever! Her reaction was similar to when her right ear was activated in that she jumped a bit when it was first turned on and then she let out a HUGE smile. She looked all around the room at everyone smiling. This was such a huge moment in time for us! We started discussing a second implant with the team before she even received her first and our journey from one to two implants was just shy of 1 year since her right ear implant was activated on Dec. 10, 2008.

Sporting the Nucleus 5 and smiling at activation

Emma did so well at the appointment even though it took place right at nap time and it took a long time. She is lucky that she was able to receive the latest implant released in Sept. 2009, the Cochlear Nucleus 5. She has two of these external devices and we are using one on each ear and using the older Nucleus Freedom models as her back-up device.

Bilateral implants!

There is a learning curve to the Nucleus 5. We are getting used to the new device operations and the remote assistant (which looks like an iPod) feature. We are also still figuring out the best way to wear the device so it doesn't keep falling off her head. We pulled out the pilot caps again to help keep them intact and are using the toupee tape quite liberally. The right device seems to stay good but the left device falls off quite frequently. This is mostly due to some residual swelling in the area of the implant that will decrease over time. I remember from the other side that it takes a few months for the swelling to go away so the magnet to really "seat" correctly on the head and avoid falling off constantly.

I can't help but be amazed and so thankful for this technology and the world it has opened up to Emma. The access to sound really has changed Emma's life. She has made so much progress in communication and motor control since she tapped into sound and everyone can see the changes - they are that major! At the same time, though, I still wish that Emma wasn't deaf so she wouldn't have to deal with us fussing with her CIs or attend hours and hours of therapy to learn to listen. But she is and she does and we're with her every step of the way so she isn't going through this alone and she is making amazing progress.

How amazing you ask? Well, in just one week with bilateral hearing, Emma has impressed everyone including her Auditory-verbal therapist who is a bit hard to impress! She is turning to sounds quicker, with a noticeable decrease in the amount of time it takes her to process the sound and respond to it and is pretty much spot on when it comes to localizing sounds. Emma has also demonstrated good sound awareness by picking 4 of 4x the correct box with an object in it when presented with identical boxes that were shaken with an object in one and nothing in the other.

Emma can hear! Out of both ears!

In the past couple of months we've heard her say ah goo, boo, oh yeah, go, blue, water, her version of Julia, and her sound for Finnegan. And, just this week I think she could have said Ma (with lots of prompting, but I can't be sure and no one else was around to hear it!). On Nov. 30th and Dec. 11th she said "I love you" to Finnegan - click here to see the video - and I can't help but think that she'll belt out an I love you to me, Chris and Julia very soon. I can't help but think how much a CI has opened up Emma's communication and are thrilled to see how she does with two implants.

There is a saying I've seen that says "Talk is cheap unless your deaf. Then, it's priceless." This is so true!

We are truly blessed to have such a wonderful, hard-working little girl. We are blessed to be working with such an amazing cochlear implant team that has taken the time to get to know Emma and believe in her unlimited potential.

Both my girls amaze and inspire me everyday, but in different ways. And this Christmas I feel very blessed.

4 Comments from readers:

Tricia said...

I am willing to bet that in the next few months, Emma will have a HUGE jump in language developement. Emmi had pretty much stalled out with her left side. Within a few months of getting the second ear, she had gained TWO YEARS of language.

How do you like the remote? Med-El swicthed to remote with the new model which Emmi has. I can't say I like it. It never fails that I leave the remote behind the one time we need it. It was so much simpler when the controls were on the processor. One less thing to carry with me and keep track of. Plus, I could physically see what settings we were using before.

Anonymous said...

Oh this is such great news! I just can't get over that smile of hers, it just melts your heart. I am so excited for her and for you guys; going bilateral is going to change everything! So cool.


Tara Bennett said...

This is just amazing. I am so happy for all of you!!!

I also love the pix with Santa & Mrs Claus -- too cute. :):)

Wherever HE Leads We'll Go said...

That is SO exciting! I am thrilled for Emma. A whole new world is opened up to her with endless possibilities. I have no doubt that she will continue to amaze everyone.