Friday, February 20, 2009

He's a Candidate

Dr. Sie thinks Evan is a good candidate for a cochlear implant! Jeremy and I are still in a little bit of shock--both of us thought for one reason or another, he would not be a candidate. The decision would have been made for us, and we would move on.

Evan's degree of hearing loss (severe on one side and severe to profound on the other) qualifies him for a CI. Dr. Sie reviewed Evan's MRI from December with us. Evan's cochleas are missing a turn on each side, but the portion that is missing doesn't contribute much to hearing sound. She confirmed he does have the hearing nerve on each side, and the facial nerve is where it's supposed to be to the point it exits the skull. In looking at the vestibular system (provides sense of balance), he only has one set of semi-circular canals and a tiny bud of a second set. Normally, three are present on each side and we had been told before he had two sets. All the more amazing he can walk now.

Dr. Sie told us even with a CI Evan would still almost certainly be non-verbal (we already knew this), but that it would be realistic to expect with the implant he could hear sound in the range of speech as well as enviornmental sounds. She stressed the importance of continuing with ASL, as this would be his primary expressive language.

Because Evan has tubes in his ears, he would be at increased risk for serious infections like menigitis. Also, there was a chance that the surgery could lead to increased facial weakness (from damaging the facial nerve during surgery). Dr. Sie felt both these risks were small in comparison to the potential benefit of the CI for Evan.

Jeremy and I have a lot to think about now--we have to make the decision.

8 comments:

Kristi said...

Good luck with the decision making process... I know how many variables you must be mulling over in your heads and hearts.
Hugs,
Kristi
(PS... such an insightful and helpful comment you made on Reuben's blog regarding vision!:-))

Connor's Mom said...

Sounds like you two have a lot to think about! It's so hard to know what the best decisions are as far as treatment for the kiddos with multiple medical issues-- nothing's really ever black and white, is it? It's good to know that you have some options, though. I'm sure you guys will think it through and make the best decision for Evan you can make!

~Jess

Leslie, Arlin and Katie Kauffman said...

Good luck with your decision on the CI. I am glad your doctor has at least given you realistic expectations to consider. Perhaps these conclusions have developed over the last few years as ENTs have had time to evaluate the progress with CIs that kids with CHARGE and other medical challenges realistically make? When Katie received her CI 6 years ago, she was the first child with multiple medical and sensory challenges here at our Children's Hospital to be approved for a CI. The expectations at the time were that she would become verbal and that we should first take an oral-only approach, just as you would with a "typical" child who had a CI. In the end, this led to a lot of heartache and missed communication time once reality set in. I would rather be given realistic expectations and be surprised and thrilled with better results than set my hopes on something improbable.

Good luck--it's not an easy decision.

Hugs,
Leslie, Arlin & Katie

melissa said...

Good luck with your decision!!

whatever you decide is the best for Evan. Evan will continue to thrive. He's such a cute little boy from the photos I'v seen on his blog.

The Daily Grind said...

That's great news! I'm sure whatever you decide will be best for him. Moms always know best!

Connor's Mom said...

Just wanted to let you know I've left you an award over at my blog. :)

~Jess

Eva Nichole said...

Good luck with EVERYTHING!! I wish we could get a straight answer about Eva's hearing it can really make me crazy when I get different answers from different people.
Hugs,
Crystal and Eva

Amy, Mike and Ben Russo said...

Good luck indeed making this hard decision. And I'm sure you will make the best choice for Evan whatever you decide. Personally, I have to share our story: Ben's implant has been a huge success for him and far exceeded our expectations. This is really surprising for us b/c most things don't turn out how they should for him. He too didn't have a full cochlea but enough to still get a full implant inserted. He LOVES music and has this little music box that he has at school (when it stops, he signs more). Even though he has been doing this since school started, it still warms my heart to see him enjoying music, something I never thought possible. If you have any questions about the surgury or specifics of the implant, please feel welcome to email me. Good luck with your decision making.