La La La Look!

This past Labor Day weekend, Sonya had a big leap in her speech. She can now make the “L” sound! I saw it emerge during speech therapy last week, but this weekend it became more and more consistent. This is a sound we have been working on for…I don’t know, years? Even before she was speaking, we would say to her “la la la look!” and would show her how we place our tongue at the top of our mouths to make the “L” sound.

On rainy weekends like this past one, we love to take Sonya to the Met and “la la look” at the paintings.

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Lately, Sonya asks TONS of questions constantly, and we try to get her to talk about what she is seeing in the artwork and how the figures in the painting or sculptures might be feeling and why. Her favorite sculpture of late is Adam by Tullio Lombardo, which is hidden in a room on the first floor away from the crowds. We showed Sonya how Adam had once broken into many thousands of pieces but the people at the museum put him back together like a puzzle! She also loves the story of Adam and Eve and the snake – though she might decide to just start pretending to be a puppy at any given moment. That’s three! 🙂


Sonya’s favorite activity at the Met, however, is sitting in the American Wing Cafe and enjoying some popcorn, while admiring the sculptures that surround us. We love living in New York City!

P.S. When I see painting “The Penitent Magdalene” by George de la Tour, I can’t help but want to reach out and grab the items that lay on the ground near her feet. They look just like Sonya’s CIs! Obviously, I need help at this point…

Met painting and CIs

 

 

Ideas for Storing Cochlear Implant Equipment

When we came back from Sonya’s cochlear implant activation, we received two large suitcases (one for each processor) filled with equipment. Learning how to use the equipment has been one challenge. Figuring out how best to store it has been another. I thought it would be helpful to walk you through how we have stored her devices and equipment!

As I discussed in the video, storing the various chargers, cords, etc., is challenging. The Grid It is an amazing tool. It is compact and fits tons. We LOVE IT.

Hope this is helpful! Look forward to learning any tips parents might have for storing their equipment. And I should probably start dealing with my “broken equipment” container 😉

 

 

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”

The Fear of an Ear Infection

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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.

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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)

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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.

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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.

The Sound and the Fury

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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.