Bath and Baby Works

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I am embarrassed to admit it, but it wasn’t until a couple months ago that Sonya finally began to wear her waterproof cochlear implants in the bath.

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Sonya’s first bath at one week

Since we are in and out of Ubers and speech therapy sessions almost every day, taking a nightly bath has always felt like a necessity, and a frustrating one at that. Sonya kicks and screams her way in and out of the water. On our part, the goal has always been to complete the task quickly as possible.

When I told our speech therapist that Sonya had not yet been exposed to sound in the bath, her eyes widened. “How could you not let her wear her devices?! Bath time is a critical opportunity for her to explore sound!”

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Cochlear Nucleus 6 water proof sleeves

It was the prompt I needed to get our act together. I dug through the contents of Sonya’s cochlear implant suitcases to find the water proof kit.  We placed her processors inside the water proof sleeves (a bit tricky to do actually…) inserted the coils and magnets.  We placed them on Sonya’s ears. Since the waterproof sleeves are quite large, we had to use the full-sized batteries (not the compact batteries, which fit Sonya’s small head). Sonya is back to her headbands in order to hold the very large devices in place.

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The first time she heard water, Sonya just stared blankly. Perhaps she was  stunned as she realized that water made noise. I playfully splashed her, causing her to scream in surprise.

Since then, Sonya has grown slightly more accustomed to bath time, though she still doesn’t love it. I even feel like I have to be careful about how loudly I speak in the bath, as the echo can be too much for her. I have noticed that she hates it when I dip her head in the bath water with the implants on. Perhaps it is the sound of the water that is overwhelming. Sonya does love bubbles, so I try to make sure there are plenty of bubbles in her bath water to keep her calm and interested. We do struggle with other ways of keeping her calm however.

Thankfully, friends of mine have been eager to help. My lovely friend Jane bought Sonya Tomy Do Rae Mi Dolphins. Each dolphin plays a different note when you tap them on their heads. Sonya loves them.

While I realize I need to expose Sonya to additional toys to encourage her to hear new sounds, I hesitate. Bath toys in general gross me out (these water flutes look kinda interesting, but also kinda yucky…). When Sonya was younger, we had her play with a rubber duck in the bath. The type that squirted water. A few weeks later, I realized how disgusting this toy was. Impossible to clean and never totally dry. I shudder thinking about the one time I squeezed it and brown water came out….

But I will attempt to stay open minded and to try other (sanitary!) toys that may be recommended….. Anyone? 🙂

In the meantime, hoping to make the most of bath time!

 

 

Sleep Training FAIL

A few weekends ago we celebrated Sonya’s first birthday! In preparation for the big day, I assembled a photo album highlighting my favorite photos over the past year. As I reviewed Sonya’s amazing growth and development, I couldn’t help but notice the dark circles that appeared under Yan and my eyes.

Sonya has been alive an entire year and we have not slept through the night since.

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Early days, when I thought EVENTUALLY I would sleep. How silly I was…

We used to put Sonya down wearing her cochlear implants. She is very connected to the hearing world, and would get upset when suddenly her sound was disrupted. But that decision reversed itself when I recently came into her room only to find her SUCKING on the battery! She had figured out how to remove it from the processor. I am trying not to imagine a scenario in which she swallowed it.

I needed a solution. I decided that maybe she would be comforted by something to look at. I decided the perfect spot would be above her crib. I purchased adorable animal “wall trophies” from Hannah Andersson. We bought a unicorn, bunny, swan, zebra, elephant, sheep, reindeer and fox (when you are sleep deprived, you have trouble making decisions I have learned).

We hung them up as soon as we could. I loved the way they looked. But that night, Sonya freaked out. Perhaps it was the shadows of the animals at night hovering above her. Maybe she wondered where the rest of their bodies had gone…It was the worst night sleep in a long while.

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So (thanks to a wonderful suggestion by our speech therapist) I purchased the Baby Einstein Sea Dreams Soother. I am telling you – this product is amazing. As soon as I put her down in the crib, Sonya points at the aquarium, asking for me to turn it on for her. She smiles and laughs as soon as she sees the lights turn on and fish, crab, octopus and sea turtle begin to dance. She then turns to her side to watch the soft lights that look like ocean waves on her mattress. The combination of lights and movement seems to be enough stimulation to satisfy her. She doesn’t seem to miss not hearing.

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While great, it’s not a perfect solution. Sonya has learned how to adjust the settings which are on the top of the machine, and she uses it to wake us. In the middle of the night, when Sonya wakes up, she turns the machine on to full volume. I hear Chopin’s second Nocturne and then the sound of Sonya, singing “mama! mama!”

Now it is a beautiful sound to hear my child – who was born with profound hearing loss – to say my name, but less so when I hear it every three hours until I get her, every single night.

I know I am not the only parent in the world to suffer from sleep deprivation. I also realize we can do something about it – a.k.a. sleep training. Which we have tried – and failed at – numerous times in the past. And I know eventually we will stick to it, and it will be better.

Until then, look forward to reading any comments or suggestions you may have at midnight., 3 a.m. and probably around 6 a.m. tomorrow morning 🙂

A Unique Fish

“She is so adorable!” Our neighbor exclaimed as we held open Sonya’s trick-or-treat bag. “What is she? Some sort of robot?”

“She is a fish,” I replied.

“Well I just love the blinking lights,” she said pointing to Sonya’s processors. “A unique fish you are!”

“Yes she is!” I laughed.

Deciding when to explain to people that Sonya is wearing cochlear implants has never been easy for me. Over the summer, in Central Park’s Great Lawn, a young girl sitting nearby on a blanket pointed to us and sneered, “What are those ugly black things on that baby’s head?” Her dad quickly told her to “shut it.” I didn’t respond. Instead, I packed up Sonya’s toys, rolled up our blanket and left. I was too upset. My biggest fear was that Sonya somehow sensed my emotion and thinks that it was because I was ashamed, which is not the case. I just didn’t know what to say.

From that moment on, I knew I needed to come up with some sort of response. I decided to ask other parents in my situation, and here are their suggestions.

As soon as they can understand, teach your child the language they need about themselves and in a loving way. For example, I should plan to use the word “deaf” and “cochlear implants” around Sonya – and explain that they are just a part of who she is. Explain to Sonya that she is different, but that we all have differences.

Teach your child to use these words as a defense against ignorance. Unfortunately, what the girl in Central Park said will not be the last derogatory remark Sonya will hear in her lifetime. But if I do my job and ensure she is as well-adjusted as possible, when someone says to Sonya on the playground “You’re deaf!” she will hopefully respond with something like, “Yes – I sure am. I use my CIs to hear just like you use your glasses to see.” Ultimately, I hope Sonya is able to teach people to open their eyes and to learn.

Speak up, but not in a defensive way. This past weekend, Sonya and I visited a bookstore where I overheard a child ask her mom what Sonya had on her head. “Oh, I am sure that is helping the baby in some way,” her mom responded. I decided that this time, I would say something. I turned around and asked nicely, “Oh, do you have a question about what she is wearing? I know it is different from what you have seen before, right? These help my baby to hear.” I then removed one device and let the child look at it more closely. The little girl was interested – as was her mother. I realize that very few people in the world have CIs – they are not something that people typically encounter.

In some instances, it just makes sense to say nothing. I have noticed that far more often than not, people are too polite to say anything. I never force the conversation. I only bring it up when it emerges organically.

Find humor, when possible. A question asked in a mean tone doesn’t always warrant a serious response. One parent at Sonya’s speech therapy encountered a rude person who one morning on the elevator asked curtly what those things were on her child’s head. Something about the person’s tone and the fact that it was just too early in the morning to dive into a lesson about the amazing benefits of cochlear implant technology led this parent to simply respond with, “Oh those? they are headphones. She just loves to listen to Howard Stern in the morning.” I love this.

I would love to hear other ideas for responses as well. Do let me know if you have any suggestions!

Letting Sonya Fall

Earlier this week, Sonya had a terrible therapy session. When presented with a toy, she refused to engage. Rather, she turned her body toward the shelves of other toys pointing and grunting. Not this toy, that one! she seemed to want to say. But nothing satisfied her. It was apparent that she was frustrated and we were too.

During our hour-long drive back from the therapy session, I felt as if I were the one who had failed. I should have made better sure that Sonya was well rested. I should have taken the time to make her a green smoothie this morning (the only way to get Sonya to ingest any vegetable is to hide it in a sweet fruit smoothie). I should have done a better job parenting her, and it was being reflected in her ability to acquire speech.

Sonya took a three plus hour nap that day – highly unusual for her. That evening, she picked herself off the floor and started to cruise around her nursery. She has been doing this for some time, but today she strutted with such confidence. She held on to one of our wooden cube trunks (which I am replacing, by the way, as they are not baby safe – so let me know if you want them!) with one hand waving in the air.

Sometimes she makes it the entire way around beaming with pride. Other times, she trips over her own feet and drops to her knees. On a couple of occasions she has flipped over backwards and landed smack on her head. It is equally exhilarating and terrifying for me to watch. I try not to think about her hitting her head where the CIs are implanted. I want to catch her before any fall, but it seems impossible. But I know that she can/will do it. I have confidence in her abilities when it comes to walking.

I am trying to translate this confidence into Sonya’s speech work as well. I know that not every therapy session will be great. But over time, she will learn and improve. Her falling is not necessarily my failing.

On a side note, we recently celebrated Sonya’s first birthday! What a year it has been. Sonya had the best time. She received numerous baby dolls and books – her favorite things. We feel so blessed to have had the amazing support this past year from friends and family. 🙂 ❤

You can check out our photos from the event here: http://iheartnyphotography.pixieset.com/sonyasbirthdayparty/

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Sonya Says DADA!

I believe this week was a turning point for Sonya. On Monday, Sonya watched our speech therapist with such focus as the therapist made the “la la la” sound, that even our therapist was surprised. Sonya moved her tongue back and forth, trying to understand how to emulate that sound. The “la la” game is one we play all the time these days. Sonya loves her little baby doll and will pretend it is her baby as she rocks it and sings to it. Our goal is for her to associate her baby with the sound “la la.”

On Thursday, however, Sonya was in no mood for speech therapy. It had been a long trek that morning down the CHC. Traffic on the West Side Highway was terrible. Sonya hates her car seat and complained the entire time. The only way I can soothe her these days is to put on Elmo’s World. She shouts with delight and shakes her fists wildly as soon as she realizes it is on. She even emulates Elmo’s laugh. I realize that I am the biggest hypocrite as I always judged parents who would stick videos in front of their kids to keep them quiet. But when you are stuck in an Uber for 50 minutes, and your baby is screaming her head off, Elmo’s World is a God send. I used to have a 5.0 rating with Uber. Almost unheard of. Sonya is quickly changing that.

Once we arrived to therapy, Sonya was very quiet. Her attention span was much shorter than usual, and for some reason, each time our speech therapist said the word “yes” Sonya would burst into tears. We couldn’t figure out why. But that night, while Sonya was fighting us putting her to sleep, she erupted with her first word “DADA!” She even pointed at Yan while she said it (although sometimes she points at her stuffed lion…) But it was the most amazing sound. I will never forget it. I caught it on camera the next day.

And while I was just slightly jealous she said “DADA” not “MAMA,” I can only blame myself. I recently bought the book “Your Baby’s First Word Will Be DADA” given the many farm animal sounds in it.

Over the weekend, Sonya has consistently produced the “DA” sound, the “GUH” sound and the “NAH” sound. We can tell she is listening better too. She always smiles when you whisper her name and will listen and follow directions even when Yan is playing piano quite loudly in the background.

Such incredible progress this week and so proud of my girl.

On Music

When Yan and I used to discuss having and raising kids, we knew music education would be a given. Both former musicians (Yan plays piano and I used to play piano and acoustic guitar), music is what brought us together. On our second date, Yan made me lunch and then played me a Chopin Etude.

But we disagreed on how we would pass our love of music on to our children. I would suggest introducing them to all sorts of musical genres. Classical, jazz, pop, whatever. Let the child decide what they enjoyed and how they would incorporate it into their life. Yan on the other hand had a different view. “Chain them to the piano!” he would say in a joking (but not really joking) way.

We even bought a grand piano a few years ago. It takes up a significant amount of real estate in our New York City apartment, and forced us to forego having a TV.

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Sonya “listening” to Yan playing piano as an infant. She also might just be enjoying the vibrations that complemented her already vibrating bouncy chair.

When we learned that our baby had a high risk of hearing loss during pregnancy,  the irony was not lost on us. How could this happen to us of all people?

“Actually, it could be great.” Yan told me. “I will be able to practice at night and she won’t even notice!”

Yet, this also was not the case. Despite the fact that Sonya had hearing loss, she could feel the vibrations of the six foot-long instrument just fine. Yan’s interpretation of the Russian Romantics was enough to wake her (and many others in our building) from any sleep.

So the question of whether Sonya will appreciate music has haunted me. It is something I always ask older kids with implants. Trying to understand how they understand music through the prism of their deafness, I ask them simply whether they like to listen to music, and whether they play any instruments? So far, the response has been mixed. Some kids say they love music (typically pop or hip hop) but they would not want to listen to orchestral music. Others say they read the lyrics, but do not remember melodies. It is not something they participate in unless they have to. Disheartening to say the least.

While I have read that the newest devices (Sonya has the Nucleus 6 device by Cochlear) are much more sophisticated when it comes to hearing music than their predecessors, we will never really know what Sonya hears when she listens. We can try to emulate what it is like to hear electronically – as in a recent NPR story, which offers accounts of people who have cochlear implants and what music sounds like to them, but we will never know for sure. Interestingly, in the comments section of this story, even those with cochlear implants do not agree on what they actually hear. One commentator wrote, “Fascinating, but I’m not sure that I agree. I have cochlear implants in both ears. I could hear the differences in all of the clips, and the ones that are supposed to sound like CIs don’t sound like what I hear.”

For the time being, I will continue to encourage Sonya to experiment with music. She recently received a glockenspiel – which she seems to enjoy, though she also just loves to hit things with mallets, so I can’t be sure she is actually appreciating the sound she is producing. Ultimately, Yan and I may have to accept that our child will not touch the piano that sits in our living room, and that is okay.

Update: Sonya recently has taken interest in watching Yan play piano. I overheard them playing together recently and quickly caught it on camera. I think it is brilliant. She seems to play the right notes at the right times! Yan, however, says pure coincidence. Haha. In any case, we agreed it is adorable:

My Daughter the Cochlear Cyborg….?

Sonya was recently referred to as a “cute little cyborg.” Yan, who considers Star Trek: The Next Generation “a documentary,” absolutely welcomed the moniker. And why not…. I mean, the fact is, she is a cyborg. According to Oxford, because of her cochlear implants, Sonya’s abilities “are extended beyond normal human limitations by mechanical elements built into the body.”

CI T-Shirt
Available via Amazon here: http://www.amazon.com/CafePress-Cochlear-Implant-T-Shirt-Toddler/dp/B00MNNL4PM/ref=sr_1_5?ie=UTF8&qid=1439920025&sr=8-5&keywords=cochlear+implant+t-shirt

And I can see why people who wear cochlear implants may embrace the term cyborg to identify themselves. When Sonya was diagnosed with hearing loss, my brother sent me an article written by Michael Chorost, who proudly refers to himself as a “Cochlear Cyborg.” Born with profound hearing loss that grew worse over time, Michael chronicled his relentless pursuit to make himself hear a rendition of the famous musical piece “Bolero” by Ravel, through cochlear implant mappings and upgrades. The last sentence of his article was particularly moving to me: “My hearing is no longer limited by the physical circumstances of my body,” he writes. “While my friends’ ears will inevitably decline with age, mine will only get better.”

But the term cyborg still bothers me. I don’t want Sonya’s identity to be defined by the fact that she wears cochlear implants. It was one of my greatest fears when I learned she was deaf — that she wouldn’t feel part of our society. And it’s why Yan and I chose to pursue auditory/verbal therapy for Sonya, rather than sign language.

While it seemed like an obvious goal for us that we would want Sonya to learn to listen and speak and be part of our society, interestingly, a number of other parents we have met through speech therapy are heading in a different direction for their children. One mom I met, who now has a two-year-old with cochlear implants, refers to her child as “a deaf person who can hear.” After much work (and becoming immersed in ASL herself) her child is now fluent in English, American Sign Language as well as a couple other languages (clearly a very intelligent child!)

I certainly respect and see the wisdom behind such a decision. At night, when Sonya is not wearing her implants, I often wonder how we will communicate with her when she is older – when she has a nightmare or needs something. Sign language would certainly be useful in such a situation.

But I still believe we should focus on English first – as learning sign might interfere with Sonya’s ability to learn oral language (as children who are deaf may rely on sign if it is a tool at their disposal, as it is easier for them).

Ultimately, Sonya will be the one to determine how she chooses to identify herself – be it cyborg or whatever. And I suppose I just have to accept this. Sonya was born deaf. She may in fact in the future decide to learn ASL and join the deaf community. But for the time being, while I have some sway, I will do everything in my power to ensure that she has the opportunities available to her in our society first and foremost.

Strengthening the Weakest Link

New York City offers excellent care for children with hearing loss. Unlike many families, we were notified of the possibility of hearing loss well before Sonya was even born, and since that time have been able to proactively deal with it. We are surrounded by the finest surgeons, audiologists and speech therapists. Yet, this will not guarantee that Sonya will be successful in acquiring language. While a percentage of Sonya’s success will be based on the care she receives at the Center for Hearing and Communication and the Cochlear Implant Center, the most important factor determining how Sonya fares will be dependent on the work we do at home.

It’s a frustrating position to be in, as I am the least educated/skilled person in this arena, and yet, the greatest weight is placed on me — especially since Yan works and I am at home. And recently, despite the hours I have already put into helping Sonya develop speech at home, I have felt like I may be the weakest link when it comes to her ability to acquire language.

While Sonya has made leaps in terms of showing us that she hears all types of sounds, she is producing many of the same sounds she did prior to our trip to Italy. Still, I feel thankful and proud that she has come as far as she has. In the video below, Sonya responds to us whispering her name!

So for the time being, I am working to educate myself on ways to help Sonya acquire speech. The following list are things we are doing already on a regular basis. Also below is a list of books I am currently reading – which I thought might interest other parents in our situation. Look out for my upcoming post on how we are applying the suggestions in these books as well.

Ways to Promote Speech

1. Give opportunities for Sonya to ask for what she wants. If a favorite toy is out of reach, wait for her to vocalize that she wants that toy before reaching for it and handing it to her.

2. Imitate the sounds and facial expressions she makes.

3. Encourage her to use different vowels and speech sounds by linking sounds to toys and being consistent. For example, when we play with an airplane, we make the sound “aaaa” and when we play with a car, we make the sound “beep beep.” Eventually, Sonya will (hopefully) associate these toys with that sound.

4. Encourage Sonya to stop and listen to environmental sounds. When the phone rings, doorbell chimes or tea kettle whistles, we stop what we are doing and point to our ears. Encouraging Sonya to stop and listen to the sound – and then identify what the sound is we are hearing.

5. Narrate what is happening. Use simple language to describe the events as they are happening throughout the day. This is especially tough for me. Naturally I am an introvert – but I am forcing myself to become a chatty person.

6. Sing. We sing all day long. I try to add gestures to songs to keep it interesting/entertaining.

7. Read Baby Books. I have been told to choose books that have large pictures and are not too detailed. Brown Bear Brown Bear What Do You See – is a favorite right now. I ask lots of questions on each page, such as “what is this?” “where are his eyes?” “Where is his nose.” Sonya loves to read and typically wants to do so at least a few times a day. She doesn’t always make it through a book, however – and I don’t force it.

Books I am Reading:

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We Can Hear and Speak: The Power of Auditory-Verbal Communication for Children Who Are Deaf or Hard of Hearing

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Learning to Listen: A Book by Mothers for Mothers of Hearing-Impaired Children

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The New Language of Toys: Teaching Communication Skills to Children with Special Needs, a Guide for Parents and Teachers. This book presents toys and accompanying toy dialogues to use with children – teaching parents how to play purposefully with their child.

On Progress, Acceptance and Holland

Over the past few weeks, Sonya has made leaps in terms of her development. It seems like just yesterday she was a tiny bundle. Today, she officially started to crawl! I know our life is about to change drastically, but it is so exciting to see her make such great progress.

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Sonya at one week
Sonya last week as a flower girl at her Aunt Mariana's wedding
Sonya last week as a flower girl at her Aunt Mariana’s wedding – such a big girl!!

On the language front, Sonya is hearing and responding to sound much differently than just a few weeks ago. While in the beginning we were struggling to get her to simply notice/hear a loud sound, she has lately been emulating the sounds we make. This morning, for example, as I offered her some eggs, Sonya responded with “aye” the first sound in the word! Like many babies her age, she has started to do simple hand gestures like lifting her arms when she wants me to pick her up, but on occasion I have heard her say “uh!” for “up!” Interestingly, Sonya refuses to go to sleep unless she is wearing her implants. I carefully remove them as soon as she is in a deep sleep. She must be feeling very connected to the hearing world.

The Center for Hearing and Communication recently posted a terrific video where you can watch a brief moment from one of Sonya’s speech therapy sessions. Note – this took place several weeks ago – and I can already see the progress that has been made since that time – but it does give you a sense of the type of work we are doing with her amazing team of speech pathologists:

These days, I am feeling much better in general about Sonya’s well being. The implants themselves – which initially were difficult for me to see her with – have become such a part of Sonya that I don’t notice them at all. And when I do, I think they look rather cute. It brings to mind a poem that was sent to me by Shayna De Lowe, our cantor at Congregation Rodeph Sholom – and the mother of a son who also has bilateral cochlear implants. Cantor De Lowe has been an amazing support to me and my family. She also has an excellent blog focusing on her family’s experience here.

Prior to Sonya’s surgery, Cantor De Lowe sent me the below poem, which I love and re-read when needed.

Welcome to Holland … by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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!