Tuesday, April 28, 2009

Bilateral On My Mind

We're almost a year post-activation, and not a day goes by where I am thank God for the miracle of Christian's CI. I never thought in my wildest dreams that he would be doing as well as he is. I've learned over this year that Christian's progress is not typical. I've learned that he has surpassed many people's expectations. Geez, I went into this whole thing just hoping he would be able to hear things for safety's sake, and he's in my backyard pointing to his ear saying "Mommy, do you hear that fire engine", as it blows it's sirens at least 5 miles away. And while I am so happy, and so proud, it makes a difficult decision, even harder.

We're currently exploring possibly going bilateral with Christian (implanting his left ear). Currently, Christian is bimodal. He wears a hearing aid in his left ear, and his Cochlear Implant on his left. Christian was an exceptional hearing aid user, and his aided results get him into the 50-45db level. Over the past year, we've learned that his hearing aid complements his CI quite well, giving him some acoustic hearing along with the electrical hearing that he receives with his CI. We are absolutely certain that Christian has functional residual hearing in that ear, as he does respond to very loud voices/noises when just aided. We've also learned, that Christian hears in the 25-20db with his CI. That gives him full access to speech sounds. 25dbs makes a big difference when it comes to spoken language.

I can't help but wonder that if Christian is doing this well as a bimodal user, how would he do with both ears hearing in the 25-20db level? Surely having two ears with full access to speech sounds is better than just one, right? And, I have this recurring nightmare of Christian coming home from school with his hand over his right ear telling me it's broken. What happens when his right CI fails? I know it will. Maybe it will happen in 5th grade. Maybe it won't. What if it happens in college, during finals? Or on the baseball field in high school when he's on 2nd base? The reality is that something WILL happen to it within the next 18 years, and the fact that he doesn't have a back-up ear terrifies me. We use ASL in our home as a back-up language, something for the bath, for reinforcing concepts, and for times when his CI is off. We are committed to being an oral family, and our ASL use was never meant to be our primary form of communication. We use all of our energy to teach Christian his first language: spoken English. Christian will attend a mainstream school, thanks to his CI. If that fails, there is no way that he would be able to succeed in a mainstream classroom. I would have to pull my child out of school to deal with a failed implant.

There's not much research out there regarding situations like ours. I've read everything there is out there regarding bimodal vs. bilateral. I know the pros and cons. I know that for folks who don't get benefit out of their aid, that bilateral is the way to go. But what to do about my boy? My boy who does get SOMETHING out of his aid?

We have Christian's audiology team at both his implant center and his school on the case. We're working on speech perception testing. We're examining his localization abilities, and we're looking at all of his test scores. We're trying to compile everything we can to make an educated decision. While we know we don't have to rush, we also know that if we do chose to get the second implant, the sooner the better.

Just one more thing on my list of worries.

5 comments:

Miss Kat's Parents said...

Miss Kat is hearing at more like 40 db, and we have the same problem. We do have bilingualism to back her up, but she is hearing so great with her CI (15-20 db), why wouldn't we want to have that in both ears?

Miss Kat still has her residual hearing in her implanted ear, does Christian? Maybe that would help you decide.

Miss Kat can also hear speech but it is not clear or understandable with the aid. What about Christian? Does he have access to speech t all with his aid?

Lucas'Mommy said...

What a tough decision! I hope the answer comes soon, and you find peace with it. Lucas is a textbook candidate for bilaterals, but the surgeon won't do it because of a medical scare. We're going to try going bimodal, and hope it makes a difference!

Laurie in TN said...

Tina,

I am bilateral and LOVE hearing with my CI's in both ears. After my first implant, I wore the hearing aid in my unimplanted ear. I loved what I heard with my CI that I went ahead and had my second ear implanted. And haven't looked back. Having two ears does make a difference. There are several of us bilateral CI users out there - Jennifer, Abbie, Sam, Wayne Roorda, etc.

It is always nice to have the second CI as a backup when the first one goes out or something happens to it.

So glad Christian is doing so well! You are such a good mommy to him!

mbishopp said...

we are in the same boat. my son is bimodal.

i have been to conferences online and in d.c. to find an answer whether or not to implant his second ear when he is responding at 45 db with his hearing aid. from what i have learned is it is not a rush decision because as long as the nerve is being stimulated by the H.A., it is not going into atrophy. if the child doesn't pull it out or tell you it is bad noise, then why change it. many kids that i have talked to really enjoy the acoustic noise they get from the H.A.
he will benefit either way.
it is a tough one, we are on the fence trying to decide for our son. our audiologist is steve at hopkins, who is yours?

Val said...

you are probably familiar w/my thoughts on the bilateral, though Christian is bimodel makes it not so easy....since his ear is aided (not positive what I would do). I will tell you this though, look at my situation, could he make it in school should something happen or will you want to pull him out (like I needed to do, a 5 month ordeal).....also, the older they get, the harder it is because they know more, they have questions and you HAVE to answer them.