Be careful what you say

It has been a little over two months since Aubrey's CI activation, and she is doing well. We are starting to notice eavesdropping capabilities that she didn't have prior to receiving a CI. Tim and I were talking about something and Tim said "that really sucks", and all of a sudden we hear Aubrey say "that sucks." This was a wake up call, as she can now overhear our conversations. This is very cool, and yet at the same time we now have to be careful what we say. I will take it.

Aubrey is also starting to have longer sentence utterances. The other day she said "my favorite color is pink." This was probably the most clear, long sentence we've heard. It seems like she is progressing more and more each day. The audiology sound booth tests have been great, and she is consistently picking up sound at 25 dbls, which is right where we want her to be. She is also very confident with the ling sounds and whips through them like nothing.

Her favorite statements right now are "don't touch, that's mine" or "I can do it by myself." She especially likes to say "don't touch" when I try to take her implant off. She is very protective of her implant. If it does come off, she puts it back on while saying "I can do it by myself." As you can see, she is becoming quite vocal and we love it. Even when she says "I don't like that" after I've spent hours baking something special for her. :)

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.

A Christmas Blessing

What a difference a year makes. Last Christmas I was feeling like the Grinch. I didn't send out cards, buy many gifts or take part in many of the holiday festivities. This year is completely different. I'm so excited and so is Aubrey! I am feeling so blessed because of how well everything has gone with her surgery and progress. Plus, we just had another ENT appointment and her left ear tube is no longer blocked. No more surgeries for Aubrey in the near future and no ENT visits for 6 months, if all goes well.

Aubrey continues to respond to environmental sounds that she typically did not respond to previously. We were sitting in the living room the other day and something dropped in the kitchen. She immediately responded and said "what that" and then went "boom, boom". She also heard a car with a bad muffler in the lane next to us today and started saying "motorcycle." It's all very cool. She's also starting to hear the doorbell, which is a first. She never wants her implant off and if I even touch it, she says "don't touch it, keep it on." The surgeon said this is a very good sign and she should do well. Voice distinction will take some time, but she is responding to my voice more each day.

Aubrey is becoming quite sassy with her new found confidence. With her new haircut and ear she thinks she rules the roost. At school, she walked into a room and someone was in "her seat" and she walked right up to them and said "that's my spot." The teachers had never seen her do this before. Plus, she usually always dances and sings in private or in her small group. Now all of a sudden she is singing and dancing in front of everyone and in the hallways at school. It's a true Christmas miracle.

Here are a few pictures of her new hair and ear. :) Happy Holidays everyone!!

And, then it happened...

Aubrey's implant has been activated! Everything went very well. The biggest relief is that the implant works - the auditory nerve is receiving and processing the signal. Aubrey reacted when Melissa (audiologist) first turned it on and a series of beeping sounds began. It was then a little overwhelming for Aubrey and she started to say "too loud" and wanted to be done. As long as she was distracted she was fine. This is a very normal reaction since it's such a different way of hearing. The sound can be fuzzy at first and some people have compared it to Donald Duck. I would be scared too. :) The brain is working hard to relearn and process sound. Aubrey may not be able to make the distinction between different sounds at first or even notice if it's Tim or myself talking. The hard work continues, but we are just thrilled with how things went yesterday. By the time we got home, I was able to get the implant back on and Aubrey kept it on most of the night. By bed time, she did not want to take it off. She kept saying "keep it on." Hard to believe that just a few hours prior she wanted it off.

I was able to get some video during activation and now I just need to figure out how to upload and post it here. Very exciting. Thanks again for all your thoughts and prayers!

Life as we know it, but now with a bionic ear...

Tomorrow is the big day...the moment we've been waiting for. Aubrey's implant will be activated. We are so excited, but we're also keeping it real. We may not notice much difference at first. Her brain will need to relearn and adjust to the new bionic ear. It's a process. There is a quote that I keep referring to: "10% of the process is the hardware and 90% is the software." Tim and I will be constant teachers and aural rehabilitation will be Aubrey's main activity. There will be plenty of time for more fun activities later, but for now this is it. We have a good student. I was reminded of this today when I dropped her off at school. She was the last one to arrive and the kiddos had just sat down for circle/learning time. One of her friends tried to get her to sit in the back, but Aubrey picked up her carpet square and marched right up to the front. She sat down and was ready to learn. I asked the teachers if she always does this, and they said that she does like being in the front. I said "so, she is the geek of the group." They laughed. I thought this is just what we need as we begin this new journey. So, away we go...

I will post an update tomorrow. Thank you for thinking of us on this big day.

Oh, and please remind me to have some fun along the way. I tend to take myself and all of this way too seriously! Shocking, I know.

Two-week Follow-up

We had Aubrey's surgery follow-up yesterday. Everything looks good and she is all set for activation next Wednesday. Her left ear tube is blocked due to drainage from surgery. We will need to monitor it and it may need to be replaced. For now, we will do ear drops and hope this does the trick. Never a dull moment.

Aubrey also received her "welcome" CI package that included a Koala Bear with an implant. She loves it, but has now removed the pretend implant processor from the bear and is trying to place it on her ear. She asks everyday to go to the doctor to get the implant turned on. She says: "implant, maybe today?" It's almost  as if she understands that it may help her. She is a smart and intuitive little lady. She has handled this process beautifully.

The countdown continues...seven days until activation.