"I have a question about the implants ... does the part that is on the outside of her head stay on all the time (even at night and during bath)? I was just wondering how bath time works and bedtime (can she only sleep on her back? is she able to comfortably sleep on her side, is the outside piece water proof)?"
A couple weeks ago my friend left this question as a comment and I wanted to not only answer it, but to give everyone the inside scoop about how a cochlear implant works and reveal some of the mystery behind the bionic ear without getting too technical.
First of all during surgery the Doctors implanted the CI's internal parts into SJ's skull. Amazingly her surgeon made the incision behind the ear and then pulled the skin back to drill a well into the bone and embed the device just under the skin.
The image above shows the internal device. You can feel a bump on both sides of SJ's head. It's pretty obvious where it is, but not something you would notice without looking for it. You can see a scar and the bump in this photo, but this was right after surgery so her head had been recently shaved and the cut is fresh. She was wearing her processor on her ponytail at the time to allow her ear to heal.
There are many parts to the cochlear implant and they all have specific names, but lets just go with layman terms for now.The external device looks like a giant hearing aid with a wire, that sends the information from the microphone, then to the magnet, then to the internal parts. When the magnet comes off the sound goes off too.
The INTERNAL part is completely water proof, "sports proof", and from what I understand feels like it's not even there. However, having a magnet means she can't go through metal detectors or have MRI scans.
The EXTERNAL part is considered water proof, but there are some stipulations. She can wear it in the bath, but we take it off to wash her hair. She can wear it at a water park or in the rain. She can not wear it swimming deep under water or submersed for more than 30 minutes. Some of the other CI parents I have talked to actually feel more comfortable taking it off for swimming altogether or having their child wear a special swim cap.
To answer Tracey's question the part on the outside of her head should be on every waking hour. I am not sure what we will do when she starts swimming, but I guess we'll cross that bridge when we get to it. When we went sledding we took it off because we can't afford to loose a $50,000 piece of equipment in acres of snow and I've heard the same rules apply in the ball pit!
It's still a little strange to have her hearing be controlled by remote and powered by batteries. It's been 4 months since the first surgery and I feel like I know just enough to get by. Someday SJ will be the owner of her "ears", but for now the whole family is responsible for them. We all, including Z, are learning together and working together as a team. Eventual it will be 2nd nature.