I feel like I should post where we are at in regards to bi-lateral implantation. I know that some of my earlier posts seem a little anti-bi-lateral. That isn't how I feel. When you have a child with special needs, it is gut-wrenching to make decisions that will effect the rest of their life. The first implant seemed like an easier decision to make. It was the difference between hearing or not hearing. The second implant will improve the ability to hear in noisy situations, to localize sound and have a back-up if one implant fails. I'm sure there are others, but these are the benefits we see as most important in Isaac's case. Ian and I want to make the best decisions possible to help Isaac succeed in life. I guess the hardest part of making the decision to go bi-lateral is future technology. At CHOP our surgeon is part of the team researching how to re-generate hair cells in the cochlea. He won't go into specifics but he says that "new things are coming". This makes us think twice about having Isaac implanted in his other ear. On the other hand. Just hypothetically speaking, if later in his life, it is medically possible for Isaac to hear "naturally", will he be confused asto what he is hearing? Let me specify...If he hears a digital sound in his right ear from his cochlear implant and has natural hearing from his left ear, will he reject the natural hearing? Will the two different sounds confuse him? I just wonder that because he is so used to hearing through the implant will he not like how things sound naturally. For example, I know a few people who wear analog hearing aids and they don't like the sound of the newer digital aids. The prefer the analog ones because it is what they have used for so many years. I wonder if this is how Isaac would feel later in life. Would it be better to maximize his ability to hear with two implants? Also, if we have him implanted now, he will have the same model of implant for both ears. I have read that a totally implantable device is being researched. This would be awesome! Imagine Isaac being able to hear the water running when he is in the shower....or be able to hear his future wife snoring at night. These circumstances will be possible in the future. It is just a matter of time. I am a firm believer that if you can think it, you can do it.
But, if we opt to have Isaac go bi-lateral now we will maximize his ability to learn during the most crucial learning years of his life. We will give him the ability to enjoy music more. We will make the best use of his auditory nerve. Which I must say is a huge factor in our moving forward with bi-laterals. Over time, the auditory nerve becomes less effective if it isn't stimulated. This is why children do so well with CI's and adults have a lower success rate. This makes us wonder if Isaac's auditory nerve will be functioning very well when this new technology emerges.
I know this is a lengthy post, but I feel that I needed to vent because this is why we are struggling with bi-laterals. I know that other families that have decided to go bi-lateral have felt the same things as we are feeling. I know that careful thought is put into every decision these parents make for their children. I have felt a little guilty and depressed because it is taking us so long to make these decisions for Isaac. I know it isn't true, but I feel like other families are so much more "on the ball" than we are with this. We are taking longer to think about it and longer to research it while our son gets older and older. I know that other families feel the same things but it seems like one day, just like that, everyone I know online is going bi-lateral with their child and I feel like whoa....we should be on that ride....or why didn't the train stop for us? Where was I during that decision making process? Maybe I didn't read the blogs carefully enough to know the tug of war these parents were feeling, or maybe they never posted it. There are very few resources for implanted children where we live. I feel like Isaac is the only one in Central PA. My only connections are with the few families I know through CHOP who live hours away and my online friends. I really lean on other's experiences with their children for support, new understanding and encouragement. I just feel like I missed out on the whole decision making process these parents went through. Maybe it something that is more personal and private, but I would really like to hear that I am not alone in these thoughts. It would help my sanity a lot!
That being said we have contacted CHOP to discuss bi-laterals for Isaac. We have yet to hear back.
