Author: Missy Kvitko

Born in Fargo, North Dakota, I grew up in Minnesota. After graduating from Macalester College in 2004, I moved to New York City. For 10 years I worked in the field of public relations, representing professional services firms and financial services (in particular alternative asset managers) In 2014, my life changed dramatically with the birth of my first child, Sonya Rose. Born with severe to profound hearing loss. Sonya's care has become my full time job. It is also the best job I have ever had. My husband, Sonya and I live in Manhattan. Please feel free to email me anytime at missy.kvitko@gmail.com, or find me on instagram (@mmkvitko) and twitter (@HearSonyaRose). Thank you so much for reading.

Cochlear Implant Travel Hacks

The past couple of summers, we have been fortunate enough to spend a few weeks in Italy. Last summer, we traveled to the Amalfi Coast. It was one of the most striking places I have ever been, and we would have loved to return there. However, now that Sonya is running around, finding a place without 100-foot drops seemed important, so we opted for Tuscany.

Packing Sonya’s cochlear implant equipment is an art. Here was our checklist:

Two sets of processors
Waterproof sleeves for swimming
Three sets of compact rechargeable batteries
Two sets of standard rechargeable batteries
Two sets of battery-powered batteries (in case we were stranded without access to electricity)
Her battery charger
Her remote, cable and charger
Her Mini Mic, cable and charger
The Italian electrical convertors that fit each of these chargers

Last year, my suitcase was a mess of wires and chargers. It took us a couple hours to figure out which wire went with which device upon arrival. This year, I decided to get organized. Here are some cochlear implant / travel hacks that worked for us:

1. I used a labeler to tag every cable and charger. Tedious, to do, I know, but it really helped. Now I can easily identify which cable goes with which charger and which device.

2. I used a Grid-IT to store the equipment. For most of the equipment that involved cables and chargers, the Grid-IT was a great tool. You simply insert each device or cord in the elastic woven bands, which hold them snuggly in place. It fit into Yan’s briefcase perfectly, and I even had room for a Kindle in the back zippered pocket. It was a perfect travel solution.

3. We bought Sonya a BedBox. A former aircraft engineer and airline captain designed this piece of luggage that features an in-built bed. Sonya loved riding on top through the airport (especially during our 4+ hour layover in Zurich). Inside the suitcase we stored her books, iPad and toys, as well as the in-flight bed cushion. When at cruising altitude, you simply lift the lid of the box, flip it over and use the box to support the cushion which lays across the seat, creating a bed.

47ff5c0f68-customer-photos-image1 — An example of the bed when installed (not our kid)

It would have been amazing if Sonya had slept at all (she didn’t). But for kids who actually sleep while traveling, I think this is a cool thing. One note – it did not go through security well. We had to stop and have them investigate it. We probably looked a bit silly too traveling with it (Yan’s dad thought it was a portable toilet), but whatever.

4. We brought Yan’s parents again. We wouldn’t have gone this far without them. We alternated as to who would watch Sonya each day, so that we could each get away and do some sight seeing. Sonya learned so much Russian. She is mimicking many Russian words now. We loved spending time with them too.

As for a Sonya update, she is doing amazing. She is putting together seven to eight word sentences. Her articulation is becoming clearer. Her personality is booming and we couldn’t be prouder of all she has accomplished in just two years.

https://www.instagram.com/p/BKhPXqjj2RXFs0tRXTHmeo4WXUKVIHn5VEhgxE0/?taken-by=itsmejmandel

How Does a Cochlear Implant Sound vs Normal Hearing? Barb Cole Shares Her Perspective

Our daughter Sonya was born deaf but with the help of cochlear implants, she now hears most everything we do, albeit differently. Unlike hearing aids, which amplify sound, cochlear implants bypass the damaged area of the ear, and stimulate the auditory nerve directly, using electrodes. The signals produced by the electrodes are then recognized as sounds by the brain. Since Sonya is only 22 months, she unfortunately can’t describe what it is like to hear with cochlear implants.

My family’s friend Barb Cole, however, can! Barb suffered from degenerative hearing loss, and received a cochlear implant in her retirement. In the following post, Barb shares her difficult yet fascinating story:

My Cochlear Hybrid Implant Story
By Barb Cole

In the beginning, I did not realize I had a hearing loss until a colleague told me I was talking very loudly on the phone. I was only in my mid 30s, but found the need to gradually increase the phone’s volume at work, so I could hear my clients. I probably had hearing issues prior to this intervention and was not aware of them. I saw a doctor, who told me my hearing was borderline and that at this time I did not need hearing aids.

Ten years later, I decided to get my masters in special education. I finally got hearing aids in order to work with my students (children are more difficult to hear than adults for me). For the next 15 years I taught special needs students. I loved it, but my hearing was declining and I needed to make a career decision for my students and for myself – and so I retired.

At that time, I had received new hearing aids, but they were not really helping, so I looked into cochlear implants. Unfortunately, I was told I would not qualify for the devices, because I still had some hearing. My hearing loss was mostly in the high frequency range. I became depressed and frustrated. I could not understand my grandchildren or people on the phone. My hearing difficulties affected my speech. I struggled with pronouncing words correctly – especially multi-syllable words. I needed help going into stores, seeing doctors and talking with friends, It was very disturbing and humiliating.

When we moved from Minneapolis to Chicago my life changed! My new doctor said I qualified for a Cochlear Hybrid Implant. I would be his second patient and I would participate in a Cochlear study. He was so positive and understanding. I had my operation in November 2015, which went very well (but recovery was very painful). I was connected with my processor in December. I feel like I am traveling a very long journey. The doctor says it can take up to two years to heal.

My brain needs to re-learn how to hear, so working with the audiologist has been extremely important. There were some misunderstandings during post-activation, because I was so used to writing everything down. I needed time to process information before I could understand it. My brain is not used to hearing, processing, and understanding at the same time. It turned out to be an adjustment for the audiologist too – I kept trying to slow her down and repeat important information.

As my brain was trying to connect with my implant, I would hear loud chirping sounds – which is normal. This is the brain’s reaction to the new range of high frequency sounds (such as a child’s squeal or a police siren) that I am now able to hear. As the audiologist programs my processor, my range of sounds have been expanding – this is done slowly. The chirping sounds are annoying, but as the brain adjusts then they begin to fade – until new sounds are introduced. The radio, tv, and other electronic devices tend to have high frequencies, which causes more chirping sounds.

My brain is still learning to work with my implant. I do two hours of hearing homework a day – it’s exhausting. Homework includes listening to audio books and following along with the printed books. I do hearing games and exercises on my iPad and computer. My husband reads to me and I read to him. I listen to the TV, radio, etc., with captions, as I need to hear different sound sources in order to make the connection in my brain.

Over the last six months, there has been much testing and adjusting. This past June was my six-month post-activation check-up. I received the best news. My hearing is now in the normal range (at the bottom but in the normal range) under perfect conditions. The chirping sounds had lessened, which meant my brain had successfully adjusted to the frequency range. The audiologist then expanded the frequency range enabling me to hear more sounds.

One of the hardest adjustments has been dealing with people. I still need people to look at me, talk a little slower and clearly, so that I can hear and understand them. Loudness is an issue. While, I can adjust my devices for volume, when people talk too loudly the sounds I hear are distorted. I have thus lowered the volume of the TV – a big improvement. It is a bit easier to listen on the phone, but there are many variables: articulation, fluency, distortions, pitch, accents, and background noises. My pronunciation has greatly improved, however. I can now hear the difference in how I pronounce words and the correct way they should be pronounced.

Overall, I am glad I have the implant/processor, but it is a huge commitment and adjustment. Today I can hear birds and insects – even other people’s conversations!

Thank you, Barb!!

How to Connect Cochlear Implant Processors (N6) to an iPhone or iPad

Continue reading “How to Connect Cochlear Implant Processors (N6) to an iPhone or iPad”

How to Connect Cochlear Implant Processors to an iPhone or iPad

In a few weeks, we will head to Italy for vacation. We spent some time on the Amalfi Coast last summer, and we have since decided that Italy is a perfect destination. Beautiful culture, delicious food and lovely people. The only downside is that we have to get there. Ten hours on a plane is not easy for anyone, but for a child with cochlear implants, the background noise makes it nearly impossible to hear anything. Thankfully, we learned that Cochlear’s Mini Mic is a wonderful solution.

We wear the Mini Mic while traveling, which allows Sonya to hear our voice over the loud background noises of the airport and airplane. We also connect it to her iPad so that she can hear her videos – similar to wearing headphones. In this post, I’ll walk you through how to connect the Mini Mic to an iPad or iPhone so that your child can listen to a video similar to wearing headphones.

What you need:

Mini Mic

Remote

Double-sided Headphone Jack Cord (not sure what the official name is but this is what it looks like):

And your child’s processors and iPad. So here is everything:

Step 1: Pair your Mini Mic to the Processors and to the Remote. Cochlear has step by step instructions on how to do that here.

Step 2: Turn on the Mini Mic. The switch is on its side. A green light will flash on its top to show it is working.

Step 3: Connect the Mini Mic to the iPad using the double sided headphone jack cord. Just plug it into the bottom of the Mini Mic and to the headphone jack of the iPad or iPhone.

Step 4: Change the Settings on the Remote to “Stream” From the home screen, push the right arrow until you come to the “Stream” screen. You should see Mini Mic as an option if you paired it correctly. Just push the down arrow and select Mini Mic.

It typically takes a moment for the processors to connect. You will see they are connected because when the iPad or iPhone video is playing, blue lights (rather than green) will flicker on the front ends of the processors.

That’s it. So (relatively) easy. And it will get easier with practice. Feel free to let me know if you have any questions!

Big Leaps

Since my last update, Sonya has made a tremendous leap. Now 21 months, her speech is becoming clearer. She is saying more complex sentences. She is starting to use pronouns. There is still much work to do, but the difference in the past couple of weeks is remarkable.

One of my favorite developments is that Sonya loves to sing! She invents her own “songs,” and loves to sing them:

In addition to singing, Sonya is putting endings on words. For example, “duh” has become “duck,” “hah” is now “hat” and “fee” is “feet.”

Her favorite words are “outside” (which sounds more like “owfide”) and “yuck.” She combines words now and has started to incorporate pronouns into her sentences. While her speech has improved tremendously, her eating habits remain very limited. Any new food I offer usually is looked at with a scowl followed by a very stubborn “yuck!”

Sonya now describes big things as “big” and small things as “baby.” “Big pooper!” she says when she wants to be changed. She refers to herself as “baby” and points to her chest, which I have learned means she wants to do something by herself. When I try to get her shoes on, she resists, points to her chest and shouts “baby!” She hasn’t mastered getting shoes on yet, but her growing independence is both fun and frustrating to watch.

While speech has progressed, Sonya has struggled lately in terms of her sleep and clinginess. Naps are dwindling. I am lucky if she goes down at all these days. She wants me to “si dow!” (sit down) next to her while she falls asleep, and it is very difficult to leave the room (although I do force myself to). I recently noticed that when she wears her CIs outside, she will jump at the sight of strangers (perhaps anticipating a sound she isn’t sure about?) and sounds in the distance including sirens or helicopters. Upon hearing such sounds, she will cling to my legs, look up at me, raise her arms and say, “up mama!”

I have noticed when she does refuse the CIs, her independent nature returns. Rather than cling, Sonya will run ahead of me testing her limits by putting distance between us. I informed our speech therapists and audiologists of this development and we have Sonya scheduled for a mapping adjustment next week. In the following video, Sonya’s new pink sunglasses were a hit, but she wouldn’t wear the CIs. As you can hear, we are dealing with quite a bit of background noise in New York City, which I imagine is a factor.

Last week, while preparing Sonya’s breakfast, she came up to me, hugged my leg and looked up at me sweetly. “I wuv you mama!” she said, unsolicited. At that moment, I thought about all of the people who have helped her say that simple beautiful sentence. From the audiologist who diagnosed her as deaf and encouraged us to get CIs, to her passionate speech therapists at the Center for Hearing and Communication, her incredible surgeon Dr. Tom Roland, and our families who have supported all of us. I am so thankful to all of these people. She couldn’t have said it without them.

The Fear of an Ear Infection

Sonya’s right ear, which had developed an infection at the mastoid

A couple weeks ago, Sonya developed an ear infection. It may have started on the way home from our vacation. As the plane descended, Sonya screamed in pain. “Ee-ya!” she said, pointing to her right ear. She seemed fine once we landed, however. I didn’t think much of it.

A week later, Sonya had developed dark red circles under her eyes. They looked irritated, so I tried to use a warm compress on them a few times a day. It didn’t help. A day later, Sonya developed red dots across her cheeks and neck. She would hold her ear and cry “ee-ya, ee-ya!”

The pediatrician saw redness in her ear, but nothing more. It was only in the ear canal, so he gave us Cefdenir, an antibiotic, and drops. I felt relief knowing that we had caught the infection early.

The next morning, as Sonya played in her room, I noticed her right ear was sticking straight out of her head. The infection had spread. I immediately called her pediatrician’s office. A nurse told me to contact Sonya’s surgeon.

While ear infections are one of the most common ailments among young children, kids with cochlear implants are at higher risk for complications. Major infections may have serious consequences, as infections in the ear can (in rare cases) move to the surgical site. While rare, such infections occur more frequently in pediatric patients according to a recent study.

Sonya’s ear infection had spread to her mastoid, which is the back part of the temporal bone. By the time our surgeon looked at it, gunk was coming out of her ear. Thankfully, the surgeon changed her prescription to Augmentin, which is a more comprehensive blend of antibiotics. Within a week, the ear was back to normal.

Sonya’s right ear, a few days later. Still sticking out but not red.

Today, Sonya is doing great, and the infection seems to have cleared completely. That said, the experience helped me realize that while Sonya may seem like any other kid, she unfortunately, is more prone to complications arising from infection and if we are not vigilant, things can go south quickly. It was very frightening how quickly what seemed to be a mild ear infection moved to her surgical site.

From this experience, I plan to purchase an otoscope. While I can’t diagnose an ear infection, I can at least see what a healthy ear looks like and it will give me piece of mind to be able to see into Sonya’s ear when needed.

Update: We recently visited Sonya’s surgeon. He suggested that Sonya get her Pneumovax 23 vaccine before our trip to Europe at the end of the summer. This vaccine is typically given to kids with CIs around their second birthday, but he didn’t see a downside with her getting it a month earlier. Our pediatrician agreed. As for the otoscope, Sonya’s surgeon did not recommend one. He said that we could actually do more damage to Sonya’s ear by probing too far in by accident.

Fashionable Cochlear Implant Solutions (Part II)

Recently, a friend of mine introduced me to Rubybands on Etsy and I am forever grateful. These adorable headbands have little pockets on each side that hold the processors with a small hole for the wire of the coil to fit through. Sonya loves them. They are more comfortable for her, since the processors are not sitting behind her ears (with the pressure of a headband pushing them into her head). I love them, because they hold the processors securely in place -and prevent her from pulling them off (and tossing them away – which she has a tendency to do…) They are also adorable. She looks like a little Rosie the Riveter.

They come in a number of colors and designs. So far, I have bought them in turquoise gingham, black and white check, and a bunch of solid colors too. I went a little overboard 🙂 My only concern is that she will get so used to wearing these headbands, she won’t want to wear the processors behind her ears anymore. So we will continue to use the crochet headbands for bath time. The bands also work for boys (the knot can go in the back rather than on top).

Will keep you posted on additional solutions I come across. In the meantime, check out my earlier post on fashionable hearing aid solutions.

Peppa Pig Saves the Day

For weeks we struggled with Sonya’s persistent desire to remove her CIs. Nothing seemed to work. Nothing, that is, until in desperation we turned on our computer and let her watch Peppa Pig on YouTube. Sonya was immediately transfixed. Maybe it was the bright colors, the cheeky anthropomorphic animals, or the simple drawings. It might have had to do with the fact that one of Sonya’s first toys was a stuffed Peppa Pig doll. Whatever it was, Sonya wanted to hear this show. She pointed to her ears and sat still so that I could put her processors behind them.

This approach has worked 100 percent of the time. Even better is the fact that she is taking her processors off less often.

Our speech therapists have rallied behind this development. We incorporate Peppa and her family into speech therapy. Using a Melissa & Doug Wooden Doorbell House, we place a member of Peppa’s family inside each of the four doors. From there, Sonya must say “Hi Peppa Pig” or “Hi Mummy Pig,” etc.

Though I am happy we found a solution, I was initially disappointed to find that videos were the key to keeping Sonya’s processors on. I felt like in some way I had failed her. That I was taking the easy way out. I didn’t even want to admit to it on this blog. I worry that I may have opened Pandora’s Box. Perhaps Sonya will realize that I have no Plan B and will simply take her CIs off whenever she is in the mood to just zone out and watch TV.

While we are not a family that has forbidden screen time, we have tried to limit it. We allow Sonya to watch TV for about 15 minutes in the morning before breakfast and when we are driving to therapy and back. I am trying to phase out mindless videos and focus on interactive iPad games such as Daniel Tiger, Peek-a-Boo Barn, Toddler JukeBox, and My Very Hungry Caterpillar instead. I think that most everything in moderation is okay, and that some screen time that serves a purpose is okay.

But I have decided to be less harsh on myself. I’ll cross the above bridge if/when I get to it. For now, the importance of her being connected to the world of sound outweighs the potential negative side-effects. Including the fact that the theme songs to Peppa Pig seems to be burned in my brain.

On the other hand, how adorable would it be if Sonya learned to speak with a British accent?!

The Sound and the Fury

Now a toddler, Sonya has her own opinions on whether or not she wants to hear the world.

I remember when I first took Sonya to group therapy at the Center of Hearing and Communication. All of the parents seemed to share one concern: how to keep their child’s hearing aids on their heads. It was a problem we faced as well. At the time, Sonya was only a few months old. As long as we came up with a solution, be it double sided tape, headbands or hats, Sonya would wear her hearing aids and later, CIs without complaint. I remember the frustration I felt at that time. That it would never be this hard. I was so naive then….

These days, keeping Sonya’s CIs on her head is a constant battle. Now in toddlerhood at 17 months, Sonya realizes she holds tremendous power. If she doesn’t like carrots, she can make it clear by throwing them off of her high chair, along with her CIs. If she wants milk from a bottle instead of a cup (another battle we are simultaneously fighting) she can remove her CIs until she gets her way.

This change seemed to happen overnight. A month ago, she would point to her CIs anytime the coil came off her head (leaving her without sound), to ensure that I corrected the issue promptly. She was connected to the hearing world, and she seemed to prefer it to the quiet.

Last week, however, during our gym class, Sonya decided she didn’t want to hear the world around her anymore, and she threw her CIs to the ground and had a full-on tantrum. It was (I hate to say) embarrassing, worrisome and scary for me to watch. Embarrassing because I felt like other moms may have been judging. I worry about the fact that perhaps some day, Sonya will prefer this world. And that thought is frightening. In the clip below, I am observing Sonya playing with bubbles at the end of her gym class. While I sound happy, I am feeling very discouraged. Sonya, now calm – but without sound – looks so into her own world here…

As Sonya becomes more aware of the world around her, I imagine it can be quite overwhelming at times. Perhaps the sounds of the world can feel to be too much, and since she has the ability to simply turn it off, she may choose to do so. When this happens, I feel there is little I can do. If she turns her back to me, I can’t communicate with her (Sonya reads lips, and knows a few simple baby signs). It is a powerless feeling.

I have surveyed other moms in this predicament, and their responses have been mixed. They include:

Completely ignore the behavior. When Sonya takes her CIs off, I try not to react. She seeks a reaction. However, ignoring her behavior does not get her to put them back on. Further, Sonya is inclined to try to get into mischief when not wearing the CIs. Frankly, it is impossible/dangerous to ignore a 17 month old…Perhaps it would work if she were older.

Engage the child in a way so that she wants to wear her CIs again. For example, read a book, or do an interactive game on the iPad. This sometimes works for us. If I give Sonya my iPhone and put on Masha and the Bear (her favorite show) – she will sometimes allow me to put the CIs back on. It’s not an ideal solution, since I can see this getting out of control pretty quickly.

Prevent the child from participating in an activity they enjoy until they put the CIs back on. For example, if the child doesn’t want to wear the CIs in the pool, keep her out of the pool and make her watch the other children until she agrees to put them back on. I have heard from several moms that this technique is effective. However, it is too strict for me. I don’t want to force Sonya to feel left out because she has CIs.

Praise the child when she allows you to put them back on, and do so throughout the day. It is hard to say whether this strategy is effective, but it makes me feel good – and hopefully makes Sonya feel good too. I can tell that she loves to please us. As soon as we put the CIs back on her head, we give her a hug and kiss and tell her she is doing a great job.

Within this strategy, some suggestions include:

Give the child a sticker or a treat every time they allow you to put the CIs back on. For us, praise itself seems to be the strongest motivator – although I realize that could change soon.
Praise the child indirectly, by letting them overhear you talking about them positively. I try to compliment Sonya indirectly by telling my husband what a great job Sonya is doing by wearing her CIs, while she is in the room. I can tell Sonya knows when we are talking about her.

I realize this list is short. Unfortunately, I don’t have a solution, yet. If I come across a foolproof technique, I’ll be sure to let you know.

Sonya Gets Stitches

Sonya recently discovered a new game. It’s one she tends to play when frustrated or tired. She will look at me mischievously, then will pull off her CIs and (while smiling) drop or throw them on the floor. As soon as she sees me get up to put them back on her head, that’s her cue to take off running and laughing hysterically.

Unfortunately, on Tuesday, Sonya ran full speed into our radiator, face first. I don’t think I will ever be able to erase the sound of her little head hitting the wooden radiator cover from my memory, nor the guilt I feel that I could have prevented it.

I wasn’t sure how severe the wound was. She was crying like crazy, but calmed after a few minutes. I didn’t see much blood either. Just a cut that ran an inch length-wise above her eye, crossing her eyebrow diagonally.

I immediately FaceTimed my dad, a physician, who told me to call our pediatrician’s office. They told me to come by right away so that Sonya’s doctor could take a look, and we were there 10 minutes later.

By the time we got there, the bleeding had picked up speed. It was now running down her little cheek. Gotta love our pediatrician who, when entering the examination room to see me in shock and Sonya bleeding, asked calmly, “So, how has your day been?”

“Horrible!” I cried.

After cleaning and examining the wound, he referred us to a plastic surgeon on the Upper East Side – who he said would be able to stitch the wound without impacting the shape of her eyebrow.

I had no idea what was in store. Watching Sonya get stitches was one of the top three (if not the) worst moment of my life so far. Since she is so little, they decided not to sedate her, rather give her local anesthetic – which needed to be injected by needle to the affected site. Sonya screamed in pain. Once the pain relievers went into effect, Sonya still felt the tension of the surgery, so she continued to scream and cry “Mama!” and “Dada!” I meanwhile, tried to hold her down with the help of another nurse to make sure the doctor was able to do his job. Several internal stitches and seven external stitches later, we were done. Sonya got her Thomas the Tank Engine stickers and we went home.

Sonya fell asleep in the Uber back to our apartment, and stayed asleep for a couple hours that afternoon. It wasn’t until she was in her crib asleep that the events of the day hit me, and I am still recovering. Sonya meanwhile, seems to be doing okay with her wound. She points at it from time to time, and says something that sounds like “bobo.” Today, I put a band-aid on her baby doll’s head, and told her that in one week, it would be all better – which is when we will go back to the surgeon to remove the stitches.

So it seems, that Sonya will need to go back to wearing headbands. Hopefully, they prevent her from removing her CIs and taking off like a mad person. I am also further baby-proofing our apartment…Would love to hear any other ideas on how parents kept baby’s CIs on during this toddler phase.

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