As instructed, we kept our expectations very low. The goal for activation was to be able to tell that there were sounds in the room. It would sound robotic, and he might only perceive beeps. He was going to hate it. It was going to sound horrible. It would be at least six months before he started to even tolerate it. We'd been burned too many times before, and I was definitely not going to get my hopes even remotely up this time. If it worked at all, I would be satisfied today.
We were supposed to meet with Dr. Awesome at his office so he could check the incision and clear Brandt for activation, but due to scheduling he ended up coming to the CI clinic instead. He said the incision looked great and wondered how Brandt would do with the processor, so the audiologist Beth asked if he wanted to stay for the activation. He usually doesn't but said, "Sure, I want to see how he does!" He was fresh out of surgery so he grabbed some coffee while Brandt had his residual hearing checked. Before implantation his hearing loss was 80 decibels, severe loss. Now the implanted ear is at 95-100 decibels, a profound loss. This is actually good news, because it was 50/50 whether he would have any left at all. But it was "unique" according to Beth because he only has hearing left in the middle frequencies, when usually it's the low frequencies that remain. When Dr. Awesome came back and saw the results, he said, "That is very odd...just so weird." Are we even surprised anymore that Brandt's ears are "weird"?! Beth took out the CI processor (a beautiful turquoise color called Caribbean Pirate) and gave it to Brandt to put on. The magnet wasn't strong enough so she had to add more magnets to get the cap to stick to his head. Dr. Awesome said, "I knew he'd need more magnets, his skull and scalp are really thick." They explained that as he wears the magnets, they will push down the swelling and after a few weeks he should be able to use less magnets. (Thankfully the initial swelling that had pushed his ear out went down after a few weeks and the ear returned to more or less its original position.) As Beth was preparing to activate the processor, Dr. Awesome warned him, "You're not going to like it, no adult does. Give it at least three months."
Beth started by playing a number of tones to determine if they were "soft, good, or too loud." At the first sound, Brandt jumped in his seat and I burst into tears. I was sitting behind him so I couldn't see his face, but I'm sure he grimaced. After the frequencies were all set at a comfortable level, Beth said, "Ok, it's time to turn it on!" And Brandt was suddenly hearing the sounds in the room. He said it sounded "mechanical...I can tell there's sound there, it sounds like Soundwave from Transformers" (who speaks in a monotone, computerized voice). Beth typed everything she was saying so he could understand what was going on. Dr. Awesome asked if his voice was understandable and Brandt said, "Not quite." Beth asked if he could tell the difference between speech and other sounds and he said, "Oh yes, easy." She asked if he could tell her voice and Dr. Awesome's voice apart and he said, "You're very similar." Then she asked how the sound compared to his hearing aids and he said, "I don't have the vocabulary to describe it...it doesn't sound natural." As Dr. Awesome left he said, "Remember, this is just the start, not the finish."
Beth told us that today she was only focusing on comfort, that fine-tuning would take place later on. She put five programs on the processor, each one progressively louder, explaining that "things will start sounding clearer and softer the longer you have on the processor." Brandt said, "It's already getting better as I've had it on longer. It's not great, but it's better." Beth reminded him that he needs to primarily wear only the processor for the first month, so that his brain can adapt quicker. By the time the appointment was over Brandt was already understanding speech, with just the processor, WITH HIS EYES CLOSED!! This was only an hour since activation.
Over the next day and a half, he seemed to be understanding me better than he could with his hearing aids. He would randomly close his eyes, stick his finger in his other ear, and say, "Ask me a question." I asked things like "What is your favorite color?," "When did you graduate high school?," "What did you have for breakfast?," etc. and he understood me every time. I was having to repeat myself less often than I was used to. We were stunned. He said that I still sounded robotic and monotone, but he could understand me. And surprisingly, he doesn't hate it.
October 10: Activation, Part 2
We returned to the CI clinic two days later for "Part 2" of the activation. Brandt had already moved up to the fifth (loudest) program on the processor and said the volume was comfortable. Beth asked about sounds and he said that breathing and eating are "distracting," the microwave beeping has a "lower pitch than it used to," and strangely the only sound that hasn't changed at all is our cats' water fountain.
We told Beth how well he was doing, that he could understand me even with his eyes closed and seemed to be doing better than with hearing aids. She said, "So far, this is a really good sign." But she also cautioned us to stay guarded, because we still have a LONG journey ahead. She encouraged us to talk to each other a lot so he gets more practice with communication, and for Brandt to watch television with captioning and try to focus on listening to the dialogue.
October 16: 1 Week Post-Activation
I was very anxious to see how Brandt was going to perform in the sound booth. Knowing that it takes quite a while to get all the fine-tuning done, I kept my expectations low (the theme of this month). I figured he would miss about 75% of the words. I was shocked when he correctly repeated back each of the words Beth said: mousetrap, birthday, school bus, railroad. I did a little happy dance in my seat. Then she started reading off more words, but at a lower volume. Uh-oh, I thought. He won't be able to hear any of those, they're too soft. But he proved me wrong, he got every single one again. Then she dropped the volume again. Still got them all correct. I burst into tears. The volume dropped yet again and he got about half, but it was so quiet that I had to strain to understand them. I was trying not to make any noise because I didn't want to distract him, so when Beth opened the sound booth door, I had my hand over my mouth as my shoulders shook silently. Brandt turned around to look at me and thought I was suppressing laughter. He said, "I must have done really bad if you're laughing at me." I wiped my eyes and explained that NO I wasn't laughing, I was bawling because he did so unbelievably well!
Back in Beth's office, she told us that she is "very pleased" and compared his performance from today to how he did a year ago with hearing aids. Aided, he could understand the words at 35 decibels. Today, it was 25 decibels! At only one week post-activation!!
Next, Ariel came in for listening therapy. We had already done about six months of listening therapy with his hearing aids, ending in January of this year, so we knew the drill. First we worked on Ling-6 sounds: ah, oo, ee, sh, mm, ss. Then we did a vowel word list, where the first and last sound of each word is the same and only the middle vowel is different: pit, pat, pot, put, pet, pert, putt, etc. Then we added a new exercises, a list of 25 random sentences. Brandt read the sentences and then Ariel and I took turns reciting them for him to repeat back. At this point, I was no longer surprised that he did a lot better than he had with hearing aids--but I was very very happy.
We went out to dinner after the appointment to celebrate and test how well Brandt could do in a noisy restaurant. Despite the loud jazz music playing overhead, and several loud birthday parties (involving copious amounts of alcohol) around us, he did amazingly well. I was struggling to hear him sometimes but he didn't seem to have much trouble at all. Incredible!!
October 19: 11 Days Post-Activation
Tonight we did our listening therapy homework, and I know the words "amazing" and "incredible" are being severely overused lately, but I don't know what else to call it! With the Ling-6 sounds, I recited them each three times and he only missed a total of two--that's an 89%. On the vowel word lists, he got about 85%. I'm using the same notebook to record his results now that I used for our previous, hearing aid round of listening therapy, so I can compare his results. He used to get about 50% on both the Ling-6 and vowel word lists. Definitely a major improvement! Then we did a new list of 25 random sentences and he didn't miss a single word. We both sighed with relief and awe. It's like we've been holding our breath for the past five years and now, we can finally believe that maybe it's going to be okay.
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| Advanced Bionics Naida processor in Caribbean Pirate turquoise |
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