E's hearing aids are pretty much just expensive earrings. He is not showing any signs of response to sound. Our audiologist told us that it was time to start considering whether or not we were interested in a cochlear implant. For those of you who are not familiar with what a cochlear implant is or does, this link explains a bit:
http://products.cochlearamericas.com/cochlear-implants/how-nucleus-5-works
A cochlear implant does allow a person to receive sound input. While a CI does provide a person with hearing, it is not the same as natural hearing. A CI is NOT a "cure" for hearing loss. A person with a CI is still deaf. When the processor is not in use, the person receives no sound information. Most children implanted with a CI before the age of four do acquire spoken language skills. Not all deaf people are candidates for a CI because there are various causes of hearing loss. A CI bypasses a non-functioning inner ear and relies on a properly functioning cochlea. At this time, it is believed that E would be an excellent candidate for CI.
My husband and I now have several big decisions to make. We must decide if we want to pursue implantation for E. We must also decide if we are going to move E's care to a different hospital system. We have had both very good and very bad experiences at our current hospital. There is a hospital in our state with a very well developed and renowned pediatric audiology program. Changing would mean a great deal of paperwork, possible further delays, and a two and a half hour ONE WAY drive to the hospital. It could potentially mean much better care for E in the long run. My brain hurts from all of the swirling information and questions!
I'm thinking of you and remembering all the stress that comes along with making these decisions. Please email or call (I'll give you my number through email if you like) if you need advice or have questions. I leaned on other moms of kids who had CIs when making decisions about Lily: whether or not to implant, one implant or two, which brand of CI, etc. I hope things get moving quickly so you can have the surgery ASAP if that is the route you choose for E.
ReplyDeleteRegardless of the decisions you make now, I'm sure E will be fine!
ReplyDeleteKeep in mind that after implantation you would have to bring him back for AVT therapy and mapping (unless you can get it somewhere closer). A 2.5 hour drive each way would be a very long trip and you would have to do it multiple times. If there is a school for the deaf near you with an early childhood/family ed program they will sometimes do mapping and other audiology related things for you as well. Something else to consider.
Will you continue to sign with E if he gets a CI? (I'll admit I'm biased and I hope so). If so, consider the hospital's philosophy/attitude. Unfortunately there are still those who hold the false ideas that all Deaf people hate CIs and ASL will delay your child's language and literacy skills. You want therapists (as well as everyone else involved) to be on board and supportive with your decisions for E.
There's a blog for Deaf kids with CIs who have ASL as a first/second or concurrent language here: http://aslci.blogspot.com/
This video is a few years old but I believe was made by the same group., Some of these kids were my students during my internship last year and some of the adults were my peers in college: http://www.youtube.com/user/ASLCIUsers#p/a/u/0/sVLICqNwCEk
There's a Deaf woman who has made several good videos about CIs - they are also posted in the above blog here: http://aslci.blogspot.com/2008/04/asl-vlogs-about-cochlear-implants.html
They unfortunately are not subtitled, but there is a translation below the video.
Good luck, and happy birthday E!
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