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

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Remote

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

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

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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!

 

 

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”

Suffering from Music Loss

This post follows an earlier post On Music in which I discuss how we are approaching music education for Sonya.

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Sonya points to her ears when she hears Yan practice piano. “Ee!” she says, meaning “I hear it!”

This afternoon as Sonya napped, I did something I hadn’t done in a long while, I listened to music for fun. As Radiohead’s Separator played, I concentrated on the first dense and complicated beat, which in its second half drops into a gorgeous guitar melody. It’s impossible to describe. I want you to listen to it. It suddenly hit me that Sonya may never love it as I do.* It might not be something I can share with her when she is older and it pains me to think that.

Music used to play an enormous role in my life. My dad plays the piano and guitar. To avoid having to clean up after dinner as a kid, I would sit in the rocking chair in our living room and listen to him play. I wanted to be like him so I took up the instrument too, and then, in high school, the guitar. In college, I continued to study classical piano, folk music, pop, alternative rock and (a bit embarrassed as I write this) underground/old school hip hop.

When I want to reminisce about the time I spent in France, I listen to Liszt’s Sonata in B Minor and De La Soul’s Three Feet High and Rising album. Scenes of my early days in New York City are forever coupled with the music of Bob Dylan, Rakim and Horowitz – playing Scriabin. For most of my life, I fell asleep and woke up to music.

This changed once I knew Sonya was deaf. When we incorporate music into our playtimes, we do so purposefully in order to help Sonya understand how to listen. For example, rather than just enjoy a song in the background, we play the song, dance to it, and then stop the music to help Sonya understand to listen for sound. Months ago, (to my naive delight) Sonya would dance to what I believe was music in her head. Now she knows that she must hear music aloud to dance. She will now point at the computer when she wants to hear it.

We also refrain from having music on in the background, as background noise can make it more difficult for people with hearing loss to perceive speech sounds.

I miss music but I also must remember that I don’t have a crystal ball. We don’t know whether Sonya will appreciate it when she is older. We don’t even know what she is hearing. She may hear the overall theme or rhythm, but she might miss the oftentimes subtle moments that make music so pleasurable.

For now, Sonya certainly appears to love it. Whenever Yan has a moment to practice piano, Sonya runs to living room pointing to her ears and shouting “EE!” her sign for “I hear it!”

*I do realize this might be the case regardless of Sonya’s hearing loss. Yan also hates Radiohead 🙂 

 

Have Baby (with CIs) Must Travel (with CIs)

When I notified friends and family that we were planning a trip to the Amalfi Coast this summer, several people voiced their concerns. “A vacation is not a vacation with a baby – it’s just a trip,” one friend told me. “You aren’t going to sleep because the baby won’t get used to the time difference. Above all – you won’t be able to enjoy your vacation!” Another friend told me that we should not go this year because of Sonya’s surgery. “She could get an ear infection,” she warned “And then you would be in a foreign country with a foreign hospital and foreign doctors!” These concerns had an impact on me. Rather than feel excited about our trip, I increasingly felt anxious.

Prior to leaving, I consulted with our team of speech therapists, audiologists and surgeons. The overall consensus was that we should ABSOLUTELY travel with Sonya. “You need to take time for yourselves and enjoy being a family,” our EI service coordinator wisely told me.

For two and-a-half weeks, we toured Amalfi, Capri and Positano, Italy. It was not an easy trip (especially given that most of these towns were not stroller friendly) – however – it was one of the BEST trips I have ever been on and I know I will cherish the memories we made for the rest of my life.  That said, traveling with a baby is difficult. Traveling with a baby who has cochlear implants (I think) is even more challenging – so here is a list of tips that I hope others in our situation will find helpful!

Forget the stroller – bring a baby carrier instead: Note – this tip is particular to the Southern coast of Italy where the streets are typically paved with cobblestone and cities are built into the hills with hundreds of stairs. The stroller was most helpful in the airport – but aside from that time, we didn’t really need it at all and it collected dust in our hotel room. We used the Ergo Original Baby Carrier – which was comfortable and very easy to use.

We also decided NOT to bring a baby backpack. Lots of people recommended we do so – and we even borrowed one from a friend before our trip. We finally decided against it since we were bringing so much stuff already. We didn’t miss it.

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Enjoying the view in Positano, Italy

Get on a schedule as soon as you can (but be flexible): This proved critical for acclimating to the time change. Our schedule revolved around three nap times (one mid morning, one early afternoon and one before dinner). We also kept Sonya from sleeping more than two hours per nap, to help her get used to the time change. It only took two days for her to adjust.

Of course it wasn’t possible to be strict about the schedule either. A few nights, we kept Sonya out  so that we could enjoy dinner with family. It made me nervous to do this, but we allowed her to sleep in the next day – and I didn’t notice much of an issue in terms of her happiness when we did this occasionally.

Bring extra batteries (battery powered and rechargeable) for CIs: We brought two extra pairs of CI batteries that were rechargeable and two extra pair of batteries that were battery operated, to ensure that we wouldn’t need to disrupt Sonya’s ability to hear. I suggest packing batteries in at least two different containers just in case one gets lost.

Bring the waterproof kit/waterproof box for processors/coils: Every day we spent several hours at the pool or beach or on a boat. We (dumbly) decided not to bring the waterproof kit. I wish we had. That said, It is also a good idea to bring the waterproof storage box regardless just in case.

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Embrace cultural differences: Italians are the warmest people. They also LOVE babies. It seemed like every Italian we passed would look at Sonya and call out “bellissimo!” “principessa!”  or “bombola!” Many would go so far as to pinch her cheeks or hold her hand. At first I grimaced when this happened. But, eventually just accepted the fact that strangers were touching Sonya – and it was okay. Once I embraced this difference, I realized how lovely the Italian culture really is. So warm and affectionate! We Americans can be so cold sometimes…

Sonya and Sergio - a Porter at the hotel we stayed at in Amalfi
Sonya and Sergio – a Porter at the hotel we stayed at in Amalfi

Integrate speech therapy games into your vacation: One game that worked especially well was the “go go” game. In the pool, I would hold Sonya while Yan was a few yards away. Yan would repeat Sonya’s name until she turned herself to look at him (helping her to recognize her name). Once she saw her dad, Yan and I would both say “go! go! go!” as I gently bopped her in the water towards him. Then we repeated with Yan holding Sonya and me saying her name.

Now that Sonya can crawl, another game we played involved placing two different farm animals within crawling distance of Sonya. I would ask her, “which one says moo?” Sonya then would crawl (sometimes!) towards the cow. Sonya’s Ba Baba Lillian bought us these awesome farm animals, which double as pool toys. She loved them.

Bring your parents – if you can!: I would be remiss not to add that we did have Yan’s parents and sister at a hotel nearby. They were the most wonderful support while in Europe, and even watched Sonya a few nights so Yan and I could get some time away or visit places that were just not kid-friendly (e.g. Pompei). I think Sonya especially enjoyed having them there so that she could get that additional time to bond. A win-win!!

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Sonya and me with her Deda Eugene and Baba Lillian in Maiori, Italy

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!

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!

Accepting a New Normal

While I realize it is petty, one of the most upsetting aspects of Sonya’s hearing loss was the fact that she would need to wear hearing aids, and eventually cochlear implants.

I love the way Sonya looks and couldn’t process the fact that she would need external devices in order to hear. Above all, I feared how she would be perceived by others. The implants and hearing aids are visible and will cause people to question whether she is “a normal child.” I am ashamed to admit that it took several audiological visits to convince me that her ability to hear far outweighed such aesthetic differences.

When Sonya was one month old, she received a pair of loaner hearing aids from NYU. Aside from the fact that they blinked red lights to indicate they were on, they were actually very cute. IMG_2387IMG_2384

I realized then that my underlying fear – that these aids would somehow define my daughter – was unrealized. Sonya’s personality continued to shine, and the hearing aids did not take away from that. In fact, people didn’t even notice them – or if they did – they were drawn to her inner and outer beauty and the aids were only a side fact.