Activation Week

Elise had a sedated activation on Tuesday May 13th where they did a controlled activation while sedated to verify the auditory responses each electrode provided and look for any unwanted reactions. They were able to safely activate all but 1 electrode, which caused her to cough. They did find that a few additional electrodes were less likely to be providing auditory stimulation, but overall the results indicated that the surgery had been a success and nothing had shifted post-surgery.

Mom and Elise before sedated activation on 5-13-14
Mom and Elise before sedated activation on 5-13-14

Elise was supposed to have her first hearing activation on Wednesday May 14, 2014 but she had a high fever in the morning. We suspected it was from a UTI because she had gone off of a preventative medicine for UTIs the week before and had a history of them as kidney reflux is a complication of CHARGE syndrome that she was born with. However, because there is a higher risk of infection for about 6 months post surgery, the doctors had us go to the hospital to get checked out. The good news is that they were able to get her back to feeling a little better by the end of the day.

Today, Thursday May 15th, we finally had Elise’s activation, after a wait that seemed like an eternity.

Here we are with Dr Lee, the lead surgeon for the ABI surgery at MEEI.  He came to check on how activation was going.
Here we are with Dr Lee, the lead surgeon for the ABI surgery at MEEI. He came to check on how activation was going.

It was such an amazing day there are no words that can really even describe the joy of seeing your daughter who has never heard and you thought may never hear explore sound. Early this morning we had the activation at MEEI. She was still not feeling great today but she was doing pretty good this morning, considering. During activation they started by test the various electrodes individually closely monitoring for any reaction. After that we were on our own. Half the day was a battle of trying to determine a strategy to keep the external processor on a very active 1 year old. It is attached via a magnet and even rolling or moving her head around too much would knock it off. But by the end of the day we had a good system and Elise was having a great time exploring sound for the first time. She was talking a lot more than usual as she heard her own beautiful voice for the first time today. She was interacting with toys that had always made sounds but that she had never heard in new ways. She also seemed to be signing a lot more than usual just overall being more communicative than normal, despite fighting a low fever most of the day as she continued to recover from the day before. The way she turned her head to sound was very emotional for me as a parent- I would see hearing 1 year olds looking side to side at the source of all of the noises around them while Elise had always been very focused on just what was in front of her and never really noticed that things were going on in other directions from where she was looking. I feel like this reaction to things around her and the fact that she is being exposed to more in the world than she would otherwise is beyond the expectation that we had for the device already. We don’t know if Elise will develop speech, some children only receive sound awareness from an ABI, but after today we know that Elise is hearing and are optimistic because of her young age of implantation and the reactions she had that she will be able to detect at least some level of speech.

The activation appointment was fairly long, but here is the highlights video of the activation:

Elise woke up fever free and had her first trip to the sound booth on May 16th, the day after her activation, and was hearing at levels of 30 and 40 dB (hearing everything they tested for! Day 2 of hearing- First trip to the sound booth!

6 thoughts on “Activation Week”

  1. Thanks for sharing Elise’s story. We are happy for all of you and will look forward to hearing about her progress.

  2. So happy to see this! We bumped into you guys on the street in Boston the night before her surgery (my daughter Julianne had cochlear implants, also a patient of Dr. Lee) and I’ve been wondering how it went ever since. Congrats on a successful activation, she seems to be doing wonderfully well with language so far, I hope she continues to soar as new doors are opened for her! Keep up the good work mom & dad.

  3. Thank you so much for sharing your emotional and miraculous story. You all have been in our hearts and minds as you go through this journey and we have been sending all the positive vibes we can muster back here in Ohio. You two are amazing parents and little Elise is so blessed to have you–as you two are blessed to have her in your life. May you all have many reasons to smile together as each day comes.
    Patti King (friend of Dara and Mike)

Leave a Reply

Your email address will not be published. Required fields are marked *