Three Weeks In and Five Observations

Five observations three weeks after Sonya’s cochlear implant activation.

Several weeks following Sonya’s initial activation and here are my thoughts:

1. Our experience has been very different from the many YouTube videos which portray the activation of a cochlear implant as some kind of miraculous event – in which one’s ability to hear can be turned on like a light switch. I have watched these videos over and over. They are so moving. I am not saying such videos are not authentic. But I do sometimes question the context. Was this truly the “first time” the person could hear? Or, was this the third or fourth mapping? In any case, our experience with Sonya was much less dramatic.

2. The real work is now. While Sonya may be hearing sounds, she doesn’t yet recognize them and is having trouble processing them. She must learn to listen for and identify every new sound – which requires intense therapy and practice at home. Interestingly, while Sonya used to be able to hear low register sounds with her powerful hearing aids, she now is reacting only to high register sounds (such as bells ringing or, the “sh” and “s” sounds). She will need to re-learn how to interpret and process low register sounds.

3. Sonya’s sleep schedule has changed. She is exhausted after her intense therapy sessions in the morning, and will often sleep 2-3 hours following. At night, however, after a day of stimulation, her brain may be having trouble shutting off – and she tosses and turns, unable to fall asleep. Apparently, this is very common for babies post-implantation. From what I understand, it typically takes about a month for babies to adjust to being able to hear.

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Sonya is exhausted after her daily speech therapy sessions.

4. I find myself questioning every movement she makes. Was it a normal developmental milestone or an issue that is developing post-surgery? For example, Sonya loves to sway her body back and forth. For several days we worried whether this adorable swaying might actually be a vestibular issue resulting from the surgery. Thankfully, we no longer believe it is the case – as it is clear that it is voluntary (she just loves to dance!)

5. Further to the above, there is a constant anxiety that I am not doing enough during the day to stimulate Sonya’s hearing. I try to emulate the games we play during therapy, but often Sonya’s responses are less noticeable. Am I speaking loudly enough? Am I using the right sounds? Am I doing this right?

Ending on a positive note – A recent coup was that we were able to adjust the size of the processors Sonya wears behind her ears. We attached the compact rechargeable battery rather than the full size battery. This allows Sonya to wear her implants without additional wires clipped to her shirt. Not only challenging for us to constantly adjust where the clips were placed, depending on whether she was sitting or lying down, Sonya can now move around much easier. Special thanks to my husband Yan and mother-in-law Lillian for pushing me to make that change!

Not an Easy Week

It has been nearly a week since Sonya’s activation. I want to be positive here, but the truth is that this has been a very difficult week.

While Sonya has done amazing in terms of getting used to hearing much more sound than she was ever used to, she is also a baby. She loses patience quickly and doesn’t love having large devices hanging behind her ears and attached to her clothing. I am grateful that we were instructed to have Sonya wear hearing aids before her surgery – as she has grown somewhat accustomed to hearing devices. However, since her surgery a month ago, she has tasted the freedom of not wearing anything on her head. The cochlear implants are also much larger than her hearing aids and involve much more equipment. I feel like suddenly, what seemed to be manageable has become much more complicated…

Our speech therapists and audiologists have advised us to have Sonya to wear the implants as much as possible. But this has proven to be quite challenging. Particularly, in her car seat (where she spends about 5-6 hours per week on our way to and from speech therapy) and in her stroller.

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The issue is that the two coils, which connect/deliver information to the internal device, are placed on the back of her head. As soon as Sonya moves her head they fall off. Her implants came with a remote which beeps to alert us when the coil is off the implant. This weekend, I think the remote beeped about 40 times…

I could simply turn off the remote – but I want to do everything in my power to ensure that Sonya can hear. I kick myself anytime I notice that it has fallen off.

The good news is that the pilot caps and headbands have worked quite well to keep the processors in place behind Sonya’s ears. As long as she is upright – the processors and coils tend to stay on.

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Aside from the physical adjustment of learning how to effectively use and keep on the new equipment, it has also been an emotional adjustment. Whenever I take Sonya out in her stroller, her beautiful smile never ceases to attract strangers, who often approach us and comment on how adorable she is. I normally welcome such interactions, but these days, I feel nervous whenever it happens. Should I mention why she has wires hanging down from her head? Is it more awkward to bring it up? So far, I say nothing – and just accept the compliment and walk on.

From talking to other parents, I hear that the current adjustment period is temporary – and every baby who gets implants has the same problem – so they are on an even playing field. In time, Sonya will develop the ability to put her implants back on her head as soon as they fall off. In the meantime, would love to hear from other parents any suggestions to keeping them on her head. Thank you!

Sonya’s Cochlear Implant Activation

This week, Sonya became the proud owner of two Cochlear Nucleus devices. We turned on the devices over the course of two days — one day per ear.

At first, the audiologists tested the devices internally – so that Sonya could hear the sound, but we couldn’t. When the sound played, a box with a monkey in it lit up. Meanwhile, another therapist distracted her. So the audiologists could see if Sonya heard the sound by whether she would turn to the monkey in the box.

Once we knew Sonya was reacting to the sounds internally, the audiologists tested her reaction to sounds in her environment.

Here is Yan with Sonya on day 2 – testing her hearing in her left ear:

Unlike hearing aids, which came with a small pack of supplies, cochlear implants came with literally two small suitcases full of additional products to help you take care of the devices. It is a bit overwhelming to be honest – but I also feel extremely grateful that we have everything we need.

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Sonya even received a Cochlear Koala – with implants of its own, which she already adores and sleeps with in her crib.

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While I know this is a wonderful development, these past couple of days have been pretty tough on all of us. For one, it is an adjustment to see Sonya with the devices on. They are larger and more cumbersome than her hearing aids. Over the past few weeks, Sonya has grown accustomed to not wearing anything on her head, so she protests each time we put the CIs on by crying and wriggling. Sonya is also getting used to hearing much more sound than she was previously used to – which is tiring for her.

So I cling to small moments that tell me we are on the right path. Yesterday, while nursing – I started to sing and Sonya turned her head toward me and smiled so sweetly. She heard my voice. I’ll never forget that moment.

Preoccupations and Coincidences

Hours after our OB informed me that our unborn child had a 25 percent chance of deafness, Yan and I attended a piano concert at the Armory. The pianist, in a brief introduction before playing, explained why he had chosen to focus his concert exclusively on Beethoven’s works. Maybe it is the musician in me, but I knew this was a sign. Surely – the fact that we were listening to a concert of Beethoven’s works just hours after our genetic results had been communicated indicated that our child would be deaf.

Thinking back on it – I realize it was a preoccupation – but the coincidences didn’t seem to stop there. When I was 20 weeks pregnant, Yan and I decided to take a baby moon. I didn’t want to travel far, so we decided to take a road trip to the Berkshires. Knowing nothing but its Trip Advisor reviews, I made a reservation at the Birchwood Inn in Lenox, Massachusetts.

When we arrived, we were greeted by the inn keeper, a petite woman with short grey hair and glasses named Ellen Chenaux. Ellen helped with our luggage and gave us a tour of our room. She had gone all out for our baby moon, and provided us with a small basket of cookies, certificates for free ice cream at the town ice cream parlor, a stuffed dog (which Sonya now loves) and even a jar of pickles. It was too adorable. As she turned toward the door, I noticed she was wearing a cochlear implant.

The next morning as we entered the dining room, a white faced golden retriever brushed against the side of my leg, asking for a pet. The sweet animal sat at my feet near the fireplace as we enjoyed our breakfast, and I discreetly threw her a few scraps. Ellen must have noticed that we had connected with her dog, as she approached our table and explained that Quinn – like her – was also going deaf in her late age. Apparently, Quinn came to Ellen years earlier through a program called NEADS — Dogs for Deaf and Disabled Americans — after Ellen had developed late-onset-adult deafness. According to the Birchwood Inn’s website:

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Quinn — aka Molly Quinn McMuffin — is Ellen’s 14-year-old Golden Retriever and former Hearing Ear Dog…Quinn and Ellen — a late-deafened adult with miraculous cochlear implants — were a team for 12 years thanks to NEADS, the Princeton, MA-based association. Quinn, who is now retired, went from being an inmate, and alerted Ellen to sounds Ellen cannot hear by tapping Ellen’s leg with her paw.

Yan laughed as soon as Ellen returned to the kitchen. “Um…looks like all signs are pointing to deafness,” he joked. I tried to laugh it off – but couldn’t help but feel disturbed by the fact that out of every B&B, we chose the only one who had a deaf inn-keeper and dog.

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