Thursday, June 19, 2008

Cochlear Implant Journey, part 1

It's official. I've sent in all the paperwork to CHOP to get us started on the CI (Cochlear Implant) candidacy process. It's taken a few weeks, because I just wasn't ready. I also had to gather lots of information to send. They want copies of all reports: audiology, IFSP, physical reports pertaining to his hearing loss, etc. Now we just wait for them to call and schedule an initial information session.

It's funny, when we first heard the buzz word "cochlear implant" when he was diagnosed with the hearing loss in February, we knew so little about it. Even when we met the audiologist at CHOP at the end of March, we reacted to her like "why wouldn't everyone want a cochlear implant for their child?" She looked at us astoundedly. That's when we learned about the deaf and the Deaf community. We realized that we had a lot to learn (and still do, of course!). It's still a very positive thing in our eyes though. The fact of the matter is that Lucas lives in a hearing world and we want to provide him with every chance we can to live as an integral part of it. It will, however, never change the fact that he is deaf. I must keep reminding myself of that.

As of now, it appears as if Lucas is not getting a lot of benefit from his hearing aids. We have yet to see him react to us or to sound. That's pretty frustrating, let me tell you. I'm not losing hope that it will happen one of these days. We still wear them every day though. At the very least, he will get used to having something on his ear, because if he does get a cochlear implant, something similar will be there.

Ok, so the next big step in the candidacy process is the MRI, which is scheduled for July 3. Thank goodness he can have that done here in Lancaster. He has to be sedated for this though, because he can't move at all, so we're waiting until he is 6 months old to reduce any risk associated with sedation. The purpose of the MRI is to see the structure of the ear. If he is missing the cochlea or the auditory nerve, he will not be a candidate. The fact that they found some hearing in his right ear at 90 db at a middle frequency indicates to me that those things are at least present in the right ear, so that's good news. This link provides a list of other factors for candidacy. As far as I'm concerned, he meets all the other basic requirements. We're just waiting to hear about the MRI now, and to see if we meet CHOP's requirements.

If you're interested, Nate and I just watched a documentary on the history of the deaf community called Through Deaf Eyes (PBS, 2007). It was very informative!

1 comment:

Christian's Mommy said...

The CI Candidacy Process was an extremely emotionally and physically draining experience for us. Full of ups and downs, countless appointments, and uncertainty, I lost my mind and my patience several times. Stay positive, and enjoy your little boy right now :)