Friday, December 15, 2006

More on bilaterals

As soon as I had a chance, I posted to Ci Circle and told everyone what our surgeon had said. I admit that I'm somewhat of an addict when it comes to my various online lists. I was really interested in their feedback because there are some very intelligent and articulate people on that list who have been through this. The responses were as thoughtful as I had expected and of course it struck a cord with those whose children (of all ages) are bilateral implantees. There is a mom whose 11 month old is getting simultaneous bilateral implants. There is a mom whose 6 month old was recently implanted and will receive implant #2 in another 6 months. She also has a 5 year old with 2 implants. Ci Circle is an amazing source of information (on any Ci topic) and where else do you find people with their finger on the pulse of information, than these concerned and involved parents?

A few people said that our surgeon sounds reasonable and not as conservative as I painted him out to be. Another mother in Boston told me that their implant center does balance/vestibular testing before implanting either one or 2 implants and they are the only center in the country doing so. I know the mother of the first and youngest U.S. child to receive bilateral implants and she is the one who says get a second opinion. BUT, her children don't have CMV and a possible case of cerebral palsy. That sort of shades all of the decisions that we make from here on out.

As our surgeon made clear, there is no actual research on bilaterally implanted children. The first such surgery just took place in 2002, so this is very cutting edge and those are the kids who are being researched now. I wish he had the time to read the posts on Ci Circle because I think he would be very interested in all observations from parents who are raising bilateral children. Their experience is as valuable to me as a research paper. They report their children hearing normally in noisy situations and doing much better and needing less support in public school. However, I think most of these kids deal with deafness only and don't have other medical issues to throw in the mix. They're "vanilla deaf", and Ethan is "rainbow with sprinkles deaf".

2 comments:

Isaac's Mom said...

Hello Heather,
My name is Shiloh, mom to Isaac who has a CI. He was born 3-17-05 and activated with his CI on 10-20-06. It has been an amazing journey so far as I am sure you can relate. Good luck and God Bless you with Ethan. He is such an adorable little guy! Feel free to visit our site when you get a chance.
http://isaacsjourney.blogspot.com

Heather said...

Hi Shiloh! Thanks for commenting here, it's so nice to "meet" you. I've actually seen Isaac's blog and really enjoyed it! I am unable to leave comments there (I think you have it set to only allow team members to comment) and I couldn't find your email address, so I guess I'm hoping you come back here and read this! I don't know how else to speak with you!

Best wishes!
Heather