One Week with a Cochlear Implant

The initial phases of having a cochlear implant requires a lot of programming to adjust amount of current going to each electrode. This process is called MAPping, and Nolan will be going back to NYU frequently in December to get new MAPs. We went back this Tuesday-Wednesday to fine tune his hearing.

He has adjusted very rapidly to the cochlear implant and prefers it to his hearing aid, though he definitely does better in noise when he has two ears to hear (and his hearing aid is required for school to verify he is getting the best signal possible). 

Within 48 hours of switch-on, he was playing the piano. He states the sound is a little bit different, with emphasis on the "little bit." This is spectacular, as we were concerned the piano might sound significantly different to our budding pianist. 

A week later, he declares the sound as "normal" and happily plays the piano. We are impressed and did not expect the adjustment to happen so quickly.

He was also able to hear in the water for the first time. He loves the Neptune for this purpose. The Neptune cannot do all of the things the Naida can (noise programs, etc.) but it is perfect for water use. It does require a slightly stronger MAP than his Naida to get the same sound quality for Nolan.




We drove back to NYU on Tuesday after working and going to school for half a day. Nolan had a rough start in the morning as he was tired and is not a morning person. MAPping was a little difficult because he would point to a 5 (out of 10) for sound volume - the target is a 6 - and then point to a 4 when his audiologist increased the sound. This is inconsistent so we did some MAPping with live voice and found a good program for him. Talking to him later, he wanted it "louder" so when she would increase the volume, he would point to a 4 to make her increase it even more. We told him that he should be consistent with the number he chooses and not make it relative - hopefully our next MAPping session will be a little easier.

His new MAP is fantastic and he was given two different MAPs to use - one at a stronger level than the other. He set himself to the second program by the time we went over for his speech assessment.

The AVT was thrilled with his progress and obtaining a cochlear implant was clearly the right decision for Nolan. His speech understanding has soared from 36% best aided to over 90% in just one week. This is not a formal assessment since he has not been tested in the booth yet, but informally he understands most single-syllable words without speech reading using his implant alone. He won't need to be seen by the speech/language department again at NYU until we're at a year post-implant. We will be going to University Hospitals in Cleveland to have an assessment and determine what we should work on.

We were going to pick up his new Link hearing aid on Tuesday, but decided to hold off until our next session. Since Nolan still has 2 MAPs loaded and the hearing aid can only hold one program, we will wait until the 27th when Nolan has just one MAP loaded.

He has loved his "noise" program, which allows him to hear whoever he is facing and blocks out background noise. We also added an "echo" program for use in the gym, where reverberation is an issue. So he has four programs - MAP 1 (which he is not using as it is too quiet already), MAP 2 (the program he is on most of the time), Program 3 (noise) and Program 4 (gym/reverberation).

We are glad we have a little break from traveling back and forth to New York City. We will go back on the 27th and get another MAP and his hearing aid.

Cochlear Implant Activation Day

We drove into NYC a day early, because NYU was amazing and managed to squeeze in Nolan's post-op appointment on the Monday before his activation. We stayed in Secaucus this time, because hotel rates in the city at Christmastime are ridiculous. The hotel was great, and we drove to the mall near the Newport Station and took the PATH train in from Jersey City. There was some traffic, but it wasn't horrific and was definitely worth the savings in hotel fees.

Nolan's appointment wasn't until 3:00 pm, so we drove to Hoboken to check out the Cake Boss bakery. We were able to meet this really awesome family while we were in town. It was really cool to meet everyone in person, and my boys LOVED Cormac, Colin, and Ciaran.

We wanted to do something fun that all five boys would enjoy, and the Liberty Science Center was closed on Mondays. We ended up going to a place called HudsonPlay, which has an indoor Ninja Warrior style obstacle course. It was kid heaven.

Nolan's post-op was at 3:00 pm and we were on a tight schedule to make it, so we ate at McDonald's and caught the PATH train to 33rd street. We made it into the Otology department just in time. We were taken back and Nolan was seen by the surgeon, who said everything looks as it should. Nolan still can't swim for a little while and we have to use Ciprodex ear drops for another week, but this is all normal for a recovering tympanoplasty. You can't even see the scar behind his ear - the surgical technique is amazing.

The appointment was over quickly, and we left to explore the city. We wanted to see Rockefeller Center decked out for the holidays, so we walked over and enjoyed looking at the lights. The boys enjoyed going into the Lego store and the Nintendo store. We decided to go back to Jersey City for dinner, and ate at Orale - living in Western NY, we are always desperate for great Mexican food.

It was nearly 11:00 pm by the time we settled into bed that night. We had walked a lot and everyone was exhausted, so we had no issues with falling asleep. The activity of the day was fantastic to wear everyone out!

We were up early on Tuesday, since we needed to drive through traffic and get into the city during rush hour. We didn't have to wait long before we were called back for Nolan's activation. They did an initial check on his implant and electrode #11 wasn't working, but we were told losing one electrode wasn't a huge deal. Still, I was disappointed - I hated losing even one electrode. Fortunately, the issue was caused by an "air bubble" and disappeared when current was run through the array. Big sigh of relief! All 16 electrodes were up and running.

Volume levels were tested (we couldn't hear these tests - they were all inside Nolan's head) and once set, the microphone was turned on.

He was so nonchalant about it - and it exceeded our wildest expectations. We expected him to hear "whistles and beeps" on the first day, but he was able to understand open-set words within the first two minutes.

He was given four programs that day - the first three with increasing levels of volume and the fourth one was quieter, in case the volume was too much for him on that first day. Within 30 minutes of leaving the appointment, he was on the highest volume level.

We wandered around Union Square and the Christmas market and had lunch at Max Brenner (the chocolate is to die for). Nolan's battery wasn't fully charged from the factory settings and died in about 2 hours. We were all really tired, so we opted to head back to the hotel to re-charge the battery and relax.

Nolan has been able to describe the sounds he is hearing. All voices sound much lower-pitched to him, so I sound like a man with a deep voice. Dennis is unintelligible and has a voice too low to register. Crunching leaves sound like high-pitched dinging. Clapping and water running sounds normal. He has an echo of sound on some low-frequency consonants, especially the "D" sound (this should resolve with MAPping). He is also refusing his hearing aid, so we know it isn't from the acoustic hearing in his left ear (that ear is severe so there isn't a lot of sound coming in without a hearing aid).


The next day, we returned to the cochlear implant center and Nolan was given four new programs. The first three were of increasing volume levels again, and the fourth one was a noise program. Nolan can use that program to "tune out" background noise and will only hear the person he is facing. We also picked up Nolan's new Neptune processor, which is totally waterproof and can be used for swimming, snow activities, and in heavy rain.

Before heading out on the long drive home, we went to the National Museum of Mathematics. They have many hands-on activities and it was a perfect stop for a couple of hours.

I couldn't believe how well Nolan was hearing with his implant - just one day after activation. He could hear me on the car ride home without looking at me - despite the road noise.



He has been activated for 5 days now and his progress is absolutely astounding - but that is another blog post. We are over the moon with how well he has adjusted to the cochlear implant, though now our battle lies in getting him to continue to wear the hearing aid in his other ear. We insist for school hours, but when he has the option, he removes it and prefers the implant by far.