Success, Tough Decisions, and No Regrets

There have been a lot of discussions on the AN/AD listserve lately regarding CI "success".  I put "success" in quotes because this is defined differently case by case and it's also very subjective. Someone pointed out that we never hear about the bad CI stories or unsuccessful implant kiddos. I know there are people out there who didn't see the success they'd hoped for, and the reasons for this are all over the board. It could be an ear anatomy issue, other developmental challenges, etc. This is just another reason why deciding to implant is such a difficult decision. The outcome cannot be predicted and there is so much unknown.

However, I knew that if we did this, we were going to have to be committed to extensive auditory verbal and speech therapy. Tim and I also have to provide a good listening and learning environment at home, in the car, and the list goes on. Every moment is now a teaching moment. When the phone rings, I pause and say "listen, did you hear that" - it's the telephone ringing." It's pretty crazy, and I'm sure Aubrey wants to smack me sometimes - heck, I want to smack myself.

The best quote I've heard related to CI success is that "10% is the hardware and 90% is the software!" I think this sums it up perfectly, but I also know there will be parents who do it all and will not see the success they'd hope for. We are just a little over a month into Aubrey's CI activation and people think she is doing well, but I have to admit that I have fears that her speech may not get better. She still talks like she did prior to the CI. I know it's early, but it's still scary. I also have to remember that she has talked like this for so long and it does not correct overnight. It's a major re-learning process. But, still scary since you're never quite sure. I just wish I could get inside her head!!

I was also reminded this week of how we got here. Someone posed the question: "Does anyone regret doing a CI." I have no regrets. Even if Aubrey's speech does not improve dramatically, her listening bubble and access to sound has increased substantially. I'm having conversations with her from a distance, in background noise, and without her looking at my mouth. It's truly a miracle. Getting to this point was not easy. There are many people facing the decision to implant or not implant, and I read about it frequently on the listserve. I sent an e-mail to the listserve describing how we made the decision to implant. I will post it here in hopes that it can reach more people:

It took us a long time to make the decision to do a CI. Aubrey's team said that if she ever plateaued in her development that we could discuss a CI further. This helped calm me down a bit. I was hoping the "plateau" would not happen, but it did. We felt very good about waiting as long as we did before implanting. We needed to feel 100% confident in this decision. So, on November 22, she was implanted and I felt so at peace. Everyone was surprised at how calm I was. I really believe it was because we did everything we could before doing the CI, gave her the services necessary, and gave her time. We also waited until we were confident that Aubrey absolutely needed it. This is the only advice I can give. It was the hardest decision we've made, but I have no regrets!

Three weeks since activation

Aubrey had her first sound booth testing since her CI activation three weeks ago. I had the privilege of sitting in front of Aubrey and assisting with the testing. I was able to see her reactions. It was truly amazing, and at one point I said to Melissa "there is no way she can here this." Some of the sounds were so soft, but Aubrey seemed to hear them and proceeding to look up, open her mouth wide, smile, and put the toy in place. I could have cried, but I was in shock and kept thinking this could not be real. It's real. She is hearing sounds she never heard before. She is responding to the telephone when it rings, hearing the doorbell, and my whispers. Aubrey's teacher, Tanya, was ecstatic today and said that Aubrey was hearing so much more even in noise and from a distance. Aubrey is also responding to voices, directions, and repeating words without reading lips. We hugged, jumped up and down, and teared up a bit. It's the coolest thing in the world. I'm so proud of her and amazed at the access this implant has given her in just three weeks. Her articulation is slowly improving, and this is the piece that will take a lot of work and time. I just need to be patient. What a cool day! I'm truly overjoyed.