Friday, July 30, 2010

CI Inconveniences

We have been very proud of Sienna and her progress. We look at her as being “normal”, the miracle of technology is slowly but surely bringing her up to par with her cousins and peers. She communicates well, she is starting to count, she is singing, she imitates our words; she is interacting with her older sister, strangers are beginning to understand her. However it is still very difficult to “deal” with all the equipment she needs to put on day in and day out. From faulty processors, to recharging batteries daily, to constantly repositioning her CI’s around her ears and on her head…it makes our life forever dealing with the inconveniences of technology.

Problems we’ve encountered:

-Presently one of the screens is missing a line…so I need to call Cochlear and figure what to do next.
- Sienna got a hold of her second set of rechargeable batteries that I alternate with, couldn’t find them for 2 weeks. Then one day I found them in the washer after I had washed a pair of her shorts. That stinker! Miraculously they still work.
- Sienna is beginning to wear her CI’s in the vehicle which is great because this is when we sing, we say the alphabet, we see the trains, the animals, etc. However, just this week, my mom took her out of the car and little did I know her CI had fallen on the ground. I thought I had it at home (being pregnant and all, my memory just isn’t there), anyway after 4 hours of looking at home and crying, I finally found them on the ground outside!
- Just in June we had to replace a processor after we needed to remove the battery to turn it off. That’s after we tried two replacement controllers to find out that it was the processor.

We wonder what it will be like later on, when Sienna’s older and she is dealing with these inconveniences. Every once in a while whisper to ourselves, life isn’t fair for our little girl who for the rest of her life will be dealing with all this equipment. Some of the questions and issues we have been dealing with are:
  • The constant removal of them when she's in the pool or jumping on a trampoline (fun hearing moments she is missing out on)?
  • How will she take swimming lessons?
  • Will she ever be able to wrestle around with her sister and dad without having her CI’s fall off?
  • When will she be able to play independently without me worrying about her CI’s falling off, losing them or breaking them?

All these questions come and go, they soon pass, and the worrying soon subsides as we realize that these very small inconveniences are small prices we pay for giving Sienna the gift of hearing.

We are currently dealing with the best way to have them fit on Sienna to make our lives easier and of course to make it easier on Sienna. We have been using the ear molds with the baby worn set-up which means every 3 months we need new molds, we are dealing with cords and they still require constant monitoring to ensure they are on properly. So for the last couple of weeks we’ve been trying the snugfit with the baby worn and I’m not a fan of it because they bend her ears and they still do no remain in place. So, thanks to Megan, Lily’s mom, I am ordering the headbands that a lady makes which she loves, loves, loves. Can’t wait to try them, we are willing to try anything at this point. If you have any other ideas for our little girl, please share!


  1. have you tried using taupe tape? This will keep the coil in place. as far as the processor is concerned I pin it on Jiya's shoulders and plan to leave it this way until she is old enough to care for it.

  2. Tayten is five and has had his "ears" for almost 3 years. Here is our experience with your questions:

    The constant removal of them when she's in the pool or jumping on a trampoline (fun hearing moments she is missing out on)?

    We've tried a few times to have Tayten wear his CI in the pool, but he has acquired great lip reading skills over time and is just as comfortable without his CIs, so he never feels like he's missing out. We never remove them on the trampoline, but that's a personal decision that every family has to make.

    How will she take swimming lessons?

    Although we haven't pursued lessons yet, even in our small community offers private lessons.

    Will she ever be able to wrestle around with her sister and dad without having her CI’s fall off?

    Tayten is a monkey! He can run, jump, tumble, etc. Yes, his coil sometimes falls off, but it's nothing for him to just plop it back on. Cureently, we are using snugfit + toupe tape. I found it much easier when we went from baby worn to our current set up. We only used the baby worn set-up after switching when going to the park, camping, on the boat, etc.

    When will she be able to play independently without me worrying about her CI’s falling off, losing them or breaking them?

    It will not take long for S to learn how helpful and important her CIs are and she will want to keep them working and safe.

    I am amazed at Tayten's independence regarding his CIs.


  3. I really hope the headbands work for you. Lily can roll and tumble around and the CIs stay in the headband and the headband stays on her head. Sometimes the coil falls off, but we just pop it back on. We're trying to teach her to put it back on herself.

    As far as swimming, we do the waterproof bag (Aloksak)with a stronger magnet and a swim cap. There is a photo of this set up here: It works great for us. We just do one CI when swimming because it is too frustrating to try to keep two on under the swim cap. We use a stronger manget to get the magnet to stick well through the plastic bag. You can email me if you would like more info on how we do this. Good luck with the headbands!

  4. Hi!
    Ava is two. For the trampoline and her bike helmet we put on a hanna andersson pilot cap. She wore the snugfit/babyworn for one day - it was too complicated with the extra long cords and wires etc. We have since used toupee tape and tape the whole thing as a BTE to her ears. It really is SO MUCH EASIER for us. Again the toupee tape also helps keep the CI's on when wrestling with her siblings - it rarely falls off. As for the coils, well they do fall off several times per day but now Ava just puts it back on herself.
    For the pool - please check out my blog June 1 post and i have details with our success with the aloksak bag/swim cap. We use it every day. In the odd time that we got lazy and left Ava's CI off for the pool she DEMANDED that we put her CI on!. She jumps in, sticks her head under the water, etc etc. So yes Sienna CAN wear her CI swimming with the aloksak - you have to try it! Good luck.

  5. Thanks CI moms for the encouraging words. We are waiting for the headbands to come in, hopefully this will solve alot of our frustrations. We will also keep in mind the pilot caps for the trampoline and the swim cap for swimming! It's so great to receive advice, tips and encouragement from a great group of moms!