Habilitation Post CI Surgery

Cool! The kiddo gets an implant! Let's video tape the CI activation to share with the world. They're going to hear sound for the first time, right? Well... not quite. I remember both of my boys' first CI activations. The audie started up the computer, sent some sounds out through the computer-CI hook up, and both boys looked as if they hadn't heard a thing. My heart just sunk. Then I remember with Big Kid when the audie pointed out, "Look at his face. When the sound is transmitted, his face turns bright red." WOW, did it EVER! His brain was definitely getting input, just didn't yet know what to do with that input.

Now he's going to get his second cochlear implant, in three short days. About a month or so later his second implant will be activated and hooked up to an external processor, but it will still take time for his second ear to learn how to hear the sound. After activation, I will be driving him up weekly for "ear therapy" and remapping of his CI program as needed. Woo hoo! Three hours of driving for a one our appointment each week (she types sarcastically)!

The point is that the cochlear implant is not a "cure" for deafness. While his ear will be able to access sound through the nifty cochlear implant tool, he is still deaf. To access that sound properly, his ear will have to do tons of ear-aerobics, listening exercises to help his brain understand sound. Big Kid will have his therapy through the implant center, he will wear both implants most of the time, and at other times he will wear only the implant over his newly implanted ear, all in the name of post-implantation habilitation therapy. This process takes time, commitment, consistency, bottom line...a lot of work.

One of my favorite tools I've come across when it comes to sound/word recognition is TumbleBooks. According to the TumbleBooks website: "TumbleBookLibrary is an online collection of TumbleBooks – animated, talking picture books which teach kids the joy of reading in a format they'll love. TumbleBooks are created by adding animation, sound, music and narration to existing picture books in order to produce an electronic picture book which you can read, or have read to you."  Simply put, TumbleBooks presents books read aloud, with the words highlighted as they are read. This service is available to everyone, for a fee, but fortunately free to us through many libraries in the US.

Over the years we've accessed TumbleBooks through local libraries and Army Knowledge Online (AKO), but now can access it through MyArmyOneSource.com. If you are an Army family who would like help accessing this online resource, please send me a note and I'll help you out. Here are some screen captures from TumbleBooks (click on photo for larger view):

 

 

 



Now for a slightly humorous "first sounds" story... When Big Kid was first activated, he freaked out after we started the minivan to head home. Instead of taking off his CI, we turned down the volume right away, then turned it back up gradually on the two hour ride home. Once home he ran to the toilet and laughed hysterically when he heard himself "utilize the facilities" for the first time. We were rolling on the ground laughing, until he flushed the toilet. His mouth dropped open, pure terror on his face, and he screamed and ran out of the room because the sound scared the heck out of him.

On a slightly less embarrassing note, I remember telling him "I love you" for the first time post-CI activation, and realizing that was the first time in over three years he probably heard me say those words. That was nothing to hearing him actually say the words himself some time later. After much work, his implanted ear not only learned what sound was, but now very well understands speech and even music.

Bottom line... The CI is not a cure. Post implantation involves a bunch of work and some frustration, but it's worth it. It's all worth it. Twelve years after his first cochlear implant we can't stop Big Kid from talking...and talking...and talking... I don't know what exactly will happen with his second cochlear implantation, but we are well prepared for the work that comes after surgery. ;)