CI activations: then and now

1st CI activation, January 2009

2nd CI activation, December 2010

"When we do the best that we can, we never know what miracle is wrought in our life, or in the life of another." ~ Helen Keller

and then there were two

We had... a GREAT day. I'm exhausted, and am a bit in overload, but we couldn't have asked for a better 2nd activation experience.

We started out early and even went out for breakfast to start our day. Lucas's audiologist was running a little bit late, because he had another activation this morning. We got to see that family as they were leaving, with two sets of grandparents in tow and everything. I engaged them in conversation, because they were excited to see that Lucas had a CI too. When we were in those early stages, I always wanted to talk to people in the waiting area, but others were not always as interested in talking to me. The father asked me how Lucas is doing, and I started crying... you know, that quiet cry that you try to hold in to no avail. All of the emotions of our almost 3 year journey to bringing sound to Lucas rushed to me in that moment, and I was unable to hold it together enough to express to him how well Lucas is doing. Words came out, but were not exactly what I wanted to say. There were really tears of sheer joy and gratitude, and he sensed that, but I wanted to say so much more. I wished them well and they were on their way.

Lucas did really well all day long. He looked a little concerned in the car as we talked about going to the hospital to get his 2nd ear. We assured him that there would be no ouchies, no jammies, and no going to sleep. He then grinned from ear to ear and his body language changed dramatically. Phew. We talked to him about how his new ear might sound silly, and how his old ear would have to be connected to his head, but not on, and how that would be temporary. I guess it worked.

I promise that I dress my child in more than an undershirt when it's 34 degrees outside, but inside this mapping room it was 90 degrees. He really had some great reactions to the new sounds he was hearing. You could tell that he was somewhat unsure, as his eyes would often just move to the side when he heard the beeps. But, other times, he would say "beep, beep". We thought that was really neat. He wasn't so sure about all of the new sounds, but he was definitely a good sport.  Hopefully I'll be able to edit our video footage and post a highlights video this weekend.

He was pretty happy to build this tower...

side view...

rear view...

I love the N5s. There is such a marked difference in size. See for yourself. The side by side view does not look as different as the back view, but there really is a big difference on his head!

I never said I was a hand model... please excuse my very dry hands!

This is the very sleek remote control, that I still must learn how to use!

So, our day went as well as it could have. I felt like a little girl on Christmas morning with all of my excitement. We love the new N5s, but I'm admittedly a tad overwhelmed with figuring out how to work the remote in coordination with both implants. I need to check out the online tutorial this weekend and practice. I think it's a great feature though. 

Lucas did amazingly well today, and took it all in stride. I told him how proud I was of him tonight before he went to bed. I must tell him that pretty often, because the other day I overheard him telling one of his bears, "I'm so proud of you." Priceless!

I will admit, however, that Lucas is not super excited about the new implant. He's tolerating it well, but he expressed several times today, "I don't like it." He always says it calmly though, and there haven't been any tears or tantrums about it. While driving this evening, I removed the new ear because I knew that he would take it off as soon as I shut the car door. We keep telling him that he must wear it so that it stops sounding silly. He happily lets me put it on his ear, and then he runs off to play and forgets about it. I can't ask for much more right now. He must adjust to having sound in this ear for the time, well... ever. I'm looking forward to his ear healing completely too, so that he can go back to wearing wig tape to keep it on his head. For now, we're just using the snugfit, but it's not nearly as effective as the wig tape.

We have four programs to work through until we return in a little over a week for a new mapping session. He definitely has access to sound right now, but it's very quiet, and he's unable to discriminate speech. The goal is for him to get used to wearing the processor and to gradually increase his maps so that he has full access to sound. 

Over the next few weeks, we will try to spend some time each day with his new ear alone. We will start again at step one... sound detection. We will teach him to recognize the presence and absence of sound. Then we will be move up through the 4 levels of auditory development to discrimination (hearing the difference between 2 different sounds), identification (recognizing and labeling sound), and comprehension (understanding the meaning of sound).

I am pumped and ready to work with this new ear! But first, some sleep, and time to let this all sink in. It will take some time to get used to seeing two processors on his head. They will always be there. They will never go away. Sometimes, even on the best of days, it's hard to really digest that reality. But then, he will walk into the room and say the most magnificent sentence in the clearest, sweetest little voice, and it makes it all worth it.

Our baby is a BILATERAL bionic boy. Happy hearing birthday to your new ear, little Lucas.

nervous

Tomorrow's the big day! Lucas's 2nd CI will be activated. My emotions are just about everywhere... I'm nervous, anxious, thrilled, elated, excited, worried, relieved. I feel like we've been waiting so long for this day. I still remember his first activation day, and asking his surgeon when we could schedule the 2nd surgery. He told us no time soon. I was crushed, seriously crushed. I never gave up hope though, and here we are, 1 month short of 2 years later, and Lucas is about to get bilateral access to sound. I can't wait to see how the 2nd CI enhances his hearing abilities. can.not.wait.

I believe that he hears with his current ear as well as he can absolutely, possibly hear. It is utterly amazing to see what he can hear, what he can understand and what he can discriminate with that one bionic ear. I'll say it once, and I'll say it again - I never in a million years thought that he would hear this well. Never ever. You really have to see it to believe it. It's indescribable.

In so many ways, I'm worried that he will have a difficult adjustment period to his new ear. He will not be able to hear well with it tomorrow. We are seriously starting from scratch. It will be beeps and buzzes. I've been told that it will take less time for his brain to make sense of this new electronic sound than the first one did, but it will still be an adjustment. 

I'm totally up for the challenge though. In some ways I miss the fervor with which I approached teaching him to listen the first time around. I lived it and breathed it for so long, and then it clicked. We've just kind of been coasting along lately, because he's doing so well. No complaints. I'm ready to pull some old tricks out of my sleeves and get to work though. But, I need a cooperative almost 3-year-old with which to work. When we were at CHOP in October, Lucas would not let the audiologist map him. He could not stand for the magnet to be on his head and not be turned on, even when I explained to him what was happening. There will be a lot of that tomorrow. I've been told that 3 is a magic age though, so we'll just wait and see, and hope for a good day. 

What can I bribe with with? I know... Baja Fresh. Wait, that's for me!!!!!!!!