Cochlear Implants

5 Years with Cochlear Implants

This week marks five years since SJ got her first cochlear implant.

I looked back at the blog post I wrote about her surgery and it brings me to tears.

Then I look at the blog post about the time I had to fish for her cochlear implant off of the downstairs neighbor’s deck! I’m able to laugh about it now, but my heart still pounds a little just thinking about it.

Then there was the first time she muttered some hardly intelligible words into the microphone for the school Christmas program and I beamed with pride.

When I am old and grey I might remember this 5 year stretch as a blip on the radar of life. However, let me put it in writing that it was not! It has been a long 5 years. There have been ups and downs, challenges and rewards, but by the grace of God, we have made it to this very significant milestone.

What is so significant about 5 years?

1. It’s half a decade so that’s pretty big in my book.

2. She is in second grade now which is as far as you can go at her school. So this is her “senior year”. She graduates this spring.

3. The Cochlear warranty is 5 years and then you are eligible for an upgrade. You know how some people go berserk about the latest phone upgrades? Imagine that times one hundred!

For the record, the upgrade is for the sound processor. That means all the external parts which come off and on: the microphone, battery, and magnet.

A lot of people ask if she ever has to have another surgery as the technology improves and the answer is no. I remember watching promo DVDs from each of the three manufacturers that we had to choose from for SJ’s CI (cochlear implant). One thing they raved about was “backward compatibility” That means that whatever technology they come up with will work with the electronic medical devices that are implanted in her head. I know it’s very sci-fi but stay with me.

When SJ’s was implanted in 2012 she received the Nucleus 5.

The processor is hooked on her ponytail because her ear was still healing from surgery.

A couple years later Cochlear released the Nucleus 6 and the audiology world was abuzz with what all the new features would be. Some of SJ’s friends got upgrades. There weren’t that many noticeable changes except that it came with a snug fitting aqua accessory to make your processor waterproof. CI processors are like glasses. You take them off for “the three S’s”. Sleep. Swim. Shower. There are disposable baggies that you can order to allow you to swim with sound processors on, but they are pretty bulky so they’re hard to keep in place and it’s tricky to keep the right amount on hand for everytime you go swimming. Kind of like swim diapers, except you can’t just go to the store and pick up a pack if you run out.

That’s why the new aqua + was such an improvement.

The next time I caught wind of a new CI device was last year when they released the Kanso.

This is the same as the Nucleus 6, but instead of having an over-the-ear sound processor there is a round processor that attaches to your head and that’s it. I guess it’s more discreet. I was freaking out for a little bit wondering if SJ would want that or the traditional style that looks more like a hearing aid. J and I both decided to stick with the over-the-ear for a number of reasons, especially since she’ll be starting a new school and be responsible for all of her equipment. We want it to be something she is used to.

Now here we are at the end of 2017 and they just released the Nucleus 7 which is what SJ will be eligible for. The coolest part of this new CI is that it the first hearing device ever to be compatible with Apple products!

Okay this is where I geek out!!! I am a long time Apple user and it’s exciting to think about deaf people, including my daughter, being able to stream from their phones and iPads directly into their CIs and change their settings without carrying around an extra remote. The REALLY cool part though, the thing that makes me shriek for joy, is the FIND MY PROCESSOR feature.

You guys. This is a huge game changer.

Over the past five years, SJ has temporarily lost her processors dozen of times. We’ve driven back to parks in search of a missing processor. We’ve gone back to a playmate’s house searching every inch of area she may have crossed that day. Or the story I already mentioned where SJ slid her processor through the crack in our porch. It is so stressful and these things are not cheap. We are talking $20,000. Yes, I meant for there to be four zeros. The good news is if your child flushes their processor down the toilet or has it fly off on a roller coaster (I know people who experienced these examples first hand) you get a ONE TIME loss at no cost.

After all the headaches and heart attacks we always managed to track down missing processors. So we never needed the loss insurance, that is until a few weeks ago. SJ was rolling downhill in a Tonka truck (one of my kids’ favorite activities) and when she came in that night and was getting ready for bed I noticed she was missing a processor… again. Ugh. So we went out looking that night. We went out looking the next day. We talked to the neighbors and they were looking. One or our neighbor friends even had a metal detector.

Despite our best efforts the CI never turned up and I had to file a claim for our one time loss. The good news is we are months away from getting new ones anyway so I feel like we already reached the finish line.

That’s life with bionic ears. It’s not always easy, but it’s definitely a blessing.

By Natalie|2023-06-12T06:22:20+00:00November 2, 2017|Cochlear Implants, Our Hearing Loss Journey|0 Comments

Having a Child With Hearing Loss

This post is made possible through the support of Cochlear. This company is a huge part of our lives and something I am very passionate about. As always all opinions are my own.

I will never forget the day we found out that our daughter SJ was deaf. The intensity of those feelings that seemed like they would always be raw have since been diluted with time. It took a good two years though to find our new rhythm.

No one in our family was deaf. So at the time all I had was a stack of books and pamphlets from the audiologist about “Understanding Your Child’s Hearing Loss.” To say it was overwhelming would be an understatement. I knew nothing about hearing loss. I honestly had never even heard of the cochlear implant before. Now I don’t know how I missed it, but it just wasn’t a part of our lives at the time.

When I did hear about the cochlear implant I thought it was brain surgery, which isn’t true. I also thought it would be better to wait until my daughter was an adult and let her decide for herself whether or not she wanted cochlear implants. However, after learning so much about how critical those early years are in language development we decided we wanted her to hear. Deaf children as early as 12 months old may qualify for cochlear implants and SJ was already two and a half years old. There was a lot of time to make up for and we wanted her to hear as soon as possible.

Like I said, we didn’t have any friends or family that were deaf that I could talk to, but I heard that my friend’s dad had cochlear implants. I was desperate to hear his thoughts. So even though he lived in another state I got his email address and reached out. He told me about his hearing loss and why he chose Cochlear for his hearing implant. In short, he explained how Cochlear has an amazing track record. Cochlear has been in operation for over 30 years. They are the global leader in implantable hearing solutions. SJ and my friend’s dad have Cochlear implants, but they also provide other products such as bone conduction implants. Cochlear has helped over 450,000 people worldwide who have moderate to severe hearing loss.

Deciding to implant a hearing device into your child’s head is not an easy decision and then deciding which manufacturer she will be committed to for the rest of her life is certainly something we did not take lightly. In the end we felt like we could trust Cochlear. She’s only had her hearing implants for 3 1/2 years now, but Cochlear has gone above and beyond when it comes to partnering with us to provide SJ the opportunity to live a life without limits.

Nearly 90% of children born deaf come from parents who are hearing (source), as was the case with our family. It’s hard to know what to do and who to reach out to. If you are one of those parents, friends, or grandparents in the middle of a hearing loss journey www.IWantYouToHear.com is an incredible resource. It can ease the sting of that overwhelming shock that you feel at first. Cochlear isn’t there to pressure you into making a decision about what to do when your child has a hearing loss. That’s something extremely personal and you have to decide what’s best in your situation. However, if you have decided that you do want your child to hear they are committed to being a support for life.

When people ask me about parenting a deaf child or a child with a disability I always say the same thing.

Being a parent is a full time job. Being a special needs parent is a like working a second job on top of that.

You can’t and shouldn’t do it alone, but luckily there is help out there. I encourage you as an advocate for your child to get a support system in place. This could include doctors, early intervention specialists, teachers, therapists, and even the team at Cochlear and iwantyoutohear.com.

Another thing I say on repeat about raising special needs children (and this applies to raising children in general) is that It isn’t easy, but it is a privilege.

Speech, language, and hearing are skills that take a lot of extra effort for these precious deaf children. But as you teach them you will learn too. You will learn how to really pause, and listen, and to not take any little sound for granted.

I am truly thankful for this journey we’ve been on. I have been connected with so many amazing people along the way. I have never regretted our choice with Cochlear. We wanted our daughter to hear and now she can. We wanted our daughter to have a life with out limits and she does.

By Natalie|2023-06-12T06:25:47+00:00July 28, 2016|Cochlear Implants, Hearing Loss, Our Hearing Loss Journey, Uncategorized|6 Comments

Mornings as a Deaf Child With Cochlear Implants

The other day someone asked me about SJ’s cochlear implants. The person I was talking with had never heard of them before. I hadn’t either before I had a deaf child. They are such a huge part of my life now that I forget that it’s not “normal” and there are still a lot of things people don’t understand about the procedure and the device.

So I had the idea to share a day in the life of a child with a cochlear implant (CI), but it would probably take a day to write so I am going to break it up a bit. We’ll start with the beginning of the day.

Keep in mind these routines aren’t the same for every child with hearing loss and things will change as each child advances in their journey, but for now this is what it’s like for SJ.

CI recipients wear their processors about the same amount that the visually impaired would wear glasses. The way it was described to me was that “The Three S’s” remind you when to take them off “Shower, Swim, Sleep” So SJ wakes up in silence. She had severe/profound hearing loss already, but when someone has the cochlear implant surgery it damages whatever preexisting hearing they had. So when the processors are off she hears nothing at all.

For now I wake her up, but many years from now when she is on her own there are special deaf alarm clocks that vibrate and there is a variety of options to choose from.

Some children may like to put their CIs on the moment they wake up. SJ doesn’t. She likes to ease into her day and have things quiet at first. I mentioned this to my family and my sister in law (who is hearing) said she is the same way. Makes sense to me. I’m not much of a morning person either.

Anyway, SJ can talk without wearing her processors. She sounds the same either way except she is usually oblivious to her volume. Kind of like when someone is wearing headphones and they don’t realize that they are shouting. So I have to remind her to speak softly when this happens. She also reads lips and signs, so we manage pretty well in the mornings before she puts her processors on. It isn’t long though before she has to be dressed and ready for school. That is when she puts her processors on.

The processor is the part that allows her to hear (shown in the photo above in white, the round part is a magnet) and the implant is inside her head (shown on the left). She calls the processors her “implants” because that word is easier to say. I wrote more extensively about the equipment in the post “All About The Cochlear Implant“.

Technically SJ can put her processors on all by herself, but it’s not easy. So for now I usually do it for her. When she is bigger they will simply hook on her ears and stay put, but right now her ears are just too small. They don’t make child size cochlear implants so a 1 year old wears the exact same processors as an adult. There are multiple options for children to keep the processors on though. SJ uses special headbands that my sister in law makes for her.

At Christmas she gave her some new sparkly ones and SJ has been thrilled to have more options to choose from.

You can get more elaborate with the CI headbands, but SJ’s are as simple as they look. It’s just a headband with an elastic loop.

Sometimes she doesn’t wear headbands and on those occasions we keep the CIs in place with toupee tape.

That pretty much covers the whole morning routine. After that she is hearing and ready to head out the door and go to her deaf school!

By Natalie|2023-06-12T06:22:41+00:00March 9, 2016|Cochlear Implants, Uncategorized|5 Comments

Living in Holland (Thoughts From a Special Needs Mom)

If you have a child diagnosed with some form of special needs then you have probably come across the “Welcome To Holland” essay by Emily Perl Kingsley. Basically it compares the shock of finding out your child has a disability to the feelings you would have if you planned a trip to Italy, but landed in Holland. The idea behind the whole analogy is that Holland isn’t BAD it’s just different and may take time to readjust your original plans and learn your way around.

The comparison applies to my situation well. I thought I was raising a perfectly “normal” (for lack of a better word) child the first two years of her life before I learned that SJ was deaf. I was speaking Italian, bought all the guide books for Italy, and really believed I was in Italy until that point which I consider my crash landing in Holland.

I have known about SJ’s hearing loss for 3 years now. The 2 1/2 year mark was a significant threshold for me because at that point I knew that my daughter was deaf longer than I knew her as (I thought) a hearing child.

It really does get easier. I have an appreciation for Holland. I’ve met lots of new friends here and learned so much. I’ve got the Holland guide books and maps now. I might as well have a tshirt and bumper sticker declaring my loyalty to Holland! There are moments though. There are moments you remember this wasn’t your original destination. I am being candid because I know I am not the only special needs mom going through this.

For example I have never babied or coddled SJ for her disability. She can truly accomplish anything she wants to do. She has been learning to swim this summer and let me tell you she is a champ. She fearlessly tackles this mission with great passion and fervency. She does so without the use of her cochlear implants so she is completely without hearing the whole time. I try to sit by the pool for a little break and she will tug on me and sign “Practice! Practice! Mom, practice.” I see her going after it with all she’s got and when she comes up for air with the splashes of water blurring her vision I scream “Good job. Take a breath. KICK! KICK! KICK! You’ve got this!” but I know she can’t hear me. She can’t even read my lips or see me with the conditions that we are working with in that moment and I have felt helpless. Similarly, when my three kids are going to sleep (they share a room for now) I lie there in the dark with them for a while and Ezie says he wants to pray. After he finishes he wants his sister to take a turn. I tell him SJ can’t hear us right now because she doesn’t have her implants. If it were light it would be different because she reads lips so well, and with her implants she is just communicating non stop, but the next night we went through the same thing and Ezie said SJ needed to get her implants. He’s two and just starting to verbalize more himself, so it’s kind of heart breaking to hear him process all of it for the first time. Add to some of these emotions that SJ is starting kindergarten and she can’t go to the same school or have the same opportunities as her brother and it’s just another layer of Oh yeah, I was supposed to be in Italy.

I know I shouldn’t feel guilty sharing some of these stories, but I do because we are so blessed and I love SJ exactly as she is. We are to the point now that if I try to think of what life would be like if she weren’t deaf I absolutely can’t wrap my brain around it because it’s a part of who she is. It’s like trying to picture what she would be like if she had been a boy. That’s just not who she is and I don’t want to change a thing.

As far as the little bumps in the road, we can purchase special gear that she can wear in the water to swim with her cochlear implants on. We can make sure everyone takes a turn praying in bed before SJ takes her implants off. She goes to a phenomenal school, and will have tons of wonderful experiences this year in Kindergarten. These are really minor things, but as in the Holland analogy it’s different and it takes some getting used to.

I have a friend whose son just crossed the one year mark of being a double amputee and that family has the most incredible testimony.

I have loved cheering them along as I have watched all that their little man has achieved and I can’t wait to see what comes next. They have a caring bridge site where they post updates about Jude’s progress. Reading some of their experience has been like reliving my own. Even though SJ has artificial hearing and Jude has artificial legs there are just TONS of similarities.

I don’t know it all (that’s for sure) but since I feel like I am a couple years ahead on this journey I shared with my friend what I have come to realize after being thrown into the world of special needs parenting. I wanted to encourage her that just because it’s been a year doesn’t mean that you should be completely adjusted and move on. It’s been 3 years since SJ’s diagnosis and we are still in the transition stage. I look at the timeline like this Old normal, shock, transition (or adjustment, or adaptation), and then new normal.

We spent just over two years living in the old normal, there was probably a year of living in shock and just doing my best to stay afloat. The last two years have been transition and we’ll be here for a while. I feel pretty darn close to “New Normal” but we still have such a long way to go. I feel like for us that will be when she goes to main stream schooling. I’m sure it looks different for everyone and more experienced moms could give a lot more insight into all this and the multifaceted layers. I am just learning, but this is my message for those in similar situations. Don’t feel like you have to rush into coping or adjusting. It’s going to be uncomfortable at times for some more than others, and somedays you are in Holland with a map from Italy. That’s okay, you will get there. I will get there. Our precious babies will get there and boy will we have stories of all the adventures we’ve had!

By Natalie|2023-06-12T06:26:27+00:00August 31, 2015|Cochlear Implants, Hearing Loss, Motherhood, My Life, Our Hearing Loss Journey, Parenting Tips, Special Needs, Uncategorized|5 Comments

A Recap of the First Year with Cochlear Implants
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A Recap of the First Year with Cochlear Implants

Cochlear Implants, Hearing Loss, Our Hearing Loss Journey, Uncategorized

A Recap of the First Year with Cochlear Implants

It’s been a year since SJ had her cochlear implant activated. There have been a lot of highs and lows, but I feel like FINALLY, we are getting some momentum and everyday SJ is saying new words and responding with a new level of understanding. In order to document what’s happened this past year I wanted to do a little recap. And even though SJ’s situation is not typical, especially compared to a baby diagnosed at infancy, I still hope that this time line could be informative for parents of deaf children researching what to expect. Here is the progress from SJ first 12 months of hearing beginning at age 2 1/2.

1. On November 21, 2012 SJ cochlear implant was activated. They call this the hearing birthday. It was not the party I was expecting. She barely responded and she did not want to wear it. I tried to be positive and I didn’t even expound too much about my disappointment on my blog, but I actually cried a lot after we left the audiologist that day.

2. SJ turned to her name for the first time, and made the B sound. We also had an appointment where the volume was turned up on her implant.

What may look insignificance was a huge milestone for SJ. It was exactly 6 months a

3. We enrolled SJ in a deaf school hours away and made plans to move along with scheduling the 2nd surgery so that she could be bilateral.

4. February was a big month for SJ because even though the surgery was scheduled the audiologist was not on board (because she is, in her words, conservative about these things) and we had to write to her respectfully disagreeing with her decision. We had run-ins with insurance as well, but following the advice of SJ’s ENT, teachers, therapists, and our own intuition, we pushed through until we could get

was going to be best for our daughter and had the surgery approved.

After all that we geared up for surgery, and it was successful.

At this point I was able to see a little more response from SJ in terms of hearing, but not much and her school was concerned because their professional diagnosis showed that she was not even detecting speech sounds and needed a new mapping. And they were right!

5. At the end of February SJ was activated on her left side and hearing bilaterally for the fist time. Despite the direct requests from the school and ENT, SJ’s audiologist still hesitated to add much volume to SJ’s implants (again she was self proclaimed “conservative”). In the meantime SJ’s was healing well and we were becoming more comfortable with the cochlear implant devices.

6. The school volunteered to have their audiologist take over with SJ’s mapping and it was like NIGHT AND DAY! It is so important to have the right mapping (in layman’s terms this is basically the setting/volume, it’s a complicated process). When SJ had her CI’s remapped in March she was really hearing most sounds for the first time and it was amazing to watch. She even said her first word, “up”

7 & 8. SJ continued to grow leaps and bounds once she had the proper mapping she was consistently turning to environmental sounds and to her name. She started saying uh-oh, more, and some animal noises on her own and many other words with prompting.

9. We raised money for SJ to be able to go to summer school and her vocabulary continued to grow to up to 20 words. Some days were better than others as far as communication related frustration and cooperation with even wearing the implants, but we were excited about the upcoming school year where SJ would be going full time.

10. On SJ’s first day of school we had to pick her up early to have a CT scan at the children’s hospital because her right implant was causing her pain. The scans came back fine, but apparently she had some shifting that is not traumatic, but does take a few weeks to heal before the scar tissue sets the device back into place. This was scary, but praise the Lord everything turned out fine.

11. At this point between IEP meetings, a research study group, and observations. I felt like things were at a stand still again. It’s hard to see your child be so far behind her peers, but luckily I now know that it gets better.

12. In October SJ had a breakthrough. She can now refers to several people by name and she knows over 60 words. Everyday I hear her saying new things and I really, Really, REALLy believe that the worst is behind us this time.

*I am going to get a better video up soon! One where she is talking on her own without being fed all the answers!

By Natalie|2023-06-12T06:22:57+00:00November 22, 2013|Cochlear Implants, Hearing Loss, Our Hearing Loss Journey, Uncategorized|3 Comments

All About The Cochlear Implant (CI)
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All About The Cochlear Implant (CI)

Cochlear Implants, Uncategorized

All About The Cochlear Implant (CI)

“I have a question about the implants … does the part that is on the outside of her head stay on all the time (even at night and during bath)? I was just wondering how bath time works and bedtime (can she only sleep on her back? is she able to comfortably sleep on her side, is the outside piece water proof)?”

A couple weeks ago my friend left this question as a comment and I wanted to not only answer it, but to give everyone the inside scoop about how a cochlear implant works and reveal some of the mystery behind the bionic ear without getting too technical.

First of all during surgery the Doctors implanted the CI’s internal parts into SJ’s skull. Amazingly her surgeon made the incision behind the ear and then pulled the skin back to drill a well into the bone and embed the device just under the skin.

The image above shows the internal device. You can feel a bump on both sides of SJ’s head. It’s pretty obvious where it is, but not something you would notice without looking for it. You can see a scar and the bump in this photo, but this was right after surgery so her head had been recently shaved and the cut is fresh. She was wearing her processor on her ponytail at the time to allow her ear to heal.

There are many parts to the cochlear implant and they all have specific names, but lets just go with layman terms for now.The external device looks like a giant hearing aid with a wire, that sends the information from the microphone, then to the magnet, then to the internal parts. When the magnet comes off the sound goes off too.

The INTERNAL part is completely water proof, “sports proof”, and from what I understand feels like it’s not even there. However, having a magnet means she can’t go through metal detectors or have MRI scans.

The EXTERNAL part is considered water proof, but there are some stipulations. She can wear it in the bath, but we take it off to wash her hair. She can wear it at a water park or in the rain. She can not wear it swimming deep under water or submersed for more than 30 minutes. Some of the other CI parents I have talked to actually feel more comfortable taking it off for swimming altogether or having their child wear a special swim cap.

SJ is not supposed to sleep with her processors on. I have heard of some adults that do, but it is recommended that the skin gets a chance to “breath” and that makes sense. It’s also a good time to recharge the batteries and put let the device air out in a drying container.

To answer Tracey’s question the part on the outside of her head should be on every waking hour. I am not sure what we will do when she starts swimming, but I guess we’ll cross that bridge when we get to it. When we went sledding we took it off because we can’t afford to loose a $50,000 piece of equipment in acres of snow and I’ve heard the same rules apply in the ball pit!

It’s still a little strange to have her hearing be controlled by remote and powered by batteries. It’s been 4 months since the first surgery and I feel like I know just enough to get by. Someday SJ will be the owner of her “ears”, but for now the whole family is responsible for them. We all, including Z, are learning together and working together as a team. Eventual it will be 2nd nature.

By Natalie|2023-06-12T06:23:30+00:00March 3, 2013|Cochlear Implants, Uncategorized|2 Comments

How to Prepare for Cochlear Implant Surgery
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How to Prepare for Cochlear Implant Surgery

Cochlear Implants, Uncategorized

How to Prepare for Cochlear Implant Surgery

SJ just made it through her 2nd Cochlear Implant surgery. The Doctors said it couldn’t have gone any better and all is well. I am actually at the hospital right now and since I am just waiting for them to finish up, I thought this would be a good time to share my CI surgery tips. I have always wanted to share these suggestions on the blog in hopes that it could be helpful insight for parents of children undergoing the CI surgery or a similar procedure.

1. Preregister for the surgery ahead of time

2. Make sure your child is bathed in preparation for surgery. It will be at least 48 before they can bathe again and even longer for washing hair.

3. Allow your child to stay up late and eat late since they will not be able to eat the next day and will be sleeping most of the day as well. Try high protein, high fiber foods to help them feel full longer. Make sure all food is hidden and definitely out of reach in the morning so there aren’t any sneaky snack mishaps. You may also want to eat before your child wakes up so that you are energized without having to eat in front of them.

4. Arrange someone to help out with siblings so that they do not get too bored or interrupt during critical moments at the hospital.

5. Have directions and itinerary for anyone you plan on coming to the hospital.

6. Bring snacks and reading material to have with you while waiting. You may know ahead of time that you are staying overnight, but even if you are told it’s outpatient that could change, so plan accordingly.

7. Dress your child comfortably and bring a couple changes of clothes. Choose shirts or pajamas that button up so that you don’t have to pull anything on over the”turban” and sensitive incision area.

SJ after getting the medicine to sedate her. She was in a happy place.

8. Bring small books or toys for child to have during waiting time which could end up being a while. They can also make great distractions while they check blood pressure, heat rate etc.
(The doll was for her, the snack was for me)

9. After surgery have the nurses bandage up a doll or stuffed animal. You might also want to bring a familiar blanket or pillow case and a small photo album of loved ones to help comfort your little one.

10. During the time that the bandage stays on have plenty of hands on activities to change up frequently to keep your child from trying to pick at the headdress.

I have heard this referred to as a “sunshine basket” which might include stickers, puzzles, bubbles, you name it. They can be inexpensive and simple. The trick is to spread it out a little at a time. For example don’t give them a box of fun things, just give them one glow stick. Instead of a giant coloring book just give them one page to color, or cut out a couple stickers to peel off instead of the whole sheet. Otherwise it will all become boring and ineffective far too soon.

Obviously you know your child as an individual and your Doctor and surgical facility will be the best resource for how to prepare. These are just a few of things that helped me and SJ through both surgeries and I wanted to get it all documented while it is fresh on my mind.

On another note SJ should be coming out of the operating room any minute now and we’ll be staying at the hospital over night. I will be sure to update everyone on her progress, but so far everything is great. Thank you for your prayers and support!

By Natalie|2023-06-12T06:30:34+00:00February 14, 2013|Cochlear Implants, Uncategorized|7 Comments

Our Decision To Implant

Little did I know that by having a deaf daughter I would be thrown into a controversial cultural land mine. I love watching the show Switched at Birth on ABC Family because I get my ASL fix. In the latest episode the character Bay starts going to a Deaf school. In this scene she is with her deaf friend so it looks like everything is hunky dory, but she ends up being an outcast as a hearing person in deaf school.

The next show focuses even more on her being bullied. The show does a great job of portraying the ongoing struggle between the deaf and hearing world. The premise of the show however is about how we can all come together and be a family embracing the differences.

I’ve actually gotten emails from some people in the deaf community that told me I would be making the wrong decision to give SJ a cochlear implant. Days after she was implanted a deaf friend saw my status updates about her surgery on Facebook and said

“I hope she will be happy with her CI… I hope that is what she wants instead of a decision you are forcing on her… I will be there for her if she needs me..”

Yeah, my two year old daughter who cannot communicate is recovering from a serious surgery and I get this message. That was almost 3 months ago and here we are ready to give her a second one. I would like to use my blog as a platform to address the reason why. There are a lot of reasons and I have shared them on this blog before, but I’d like to share with you a letter that keeps it all in perspective for me.

In April we first found out for the first time that there was even a remote possibility that SJ might be deaf. That month we took a trip to Texas because I was photographing a wedding. It just so happens that while I was visiting my inlaw’s church there was a women signing during worship. God has a way with “just so happens” doesn’t he? I spoke with this women who is fluent in ASL and teaches sign language full time. We chatted and exchanged contact info. After reading my blog and keeping up with me on Facebook she sent me this message. I asked her for permission to share her words because it has been a lifeline for me throughout the ups and downs and I think there may be other parents in my situation that would benefit from her wisdom as well. This is what she sent (emphasis added)-

I just read the update on your blog and I want to tell you I’m so proud of how well you are adjusting to all of this. I know it’s incredibly overwhelming – all the tests, information, opinions, and decisions can seem like a whirlwind when you’re trying to make the best decisions and time is of the essence.
I just want to encourage you in trusting yourself and God to know what to do.
He is leading you to the people you need to help you through this transition. You have a perfect, beautiful, amazing little girl and God has incredible plans for her! I have been & will continue to pray for you & your family. You are doing everything right and Sedona is so blessed to have you as a mom! It sounds like she is a perfect candidate for the CI and is still so young where the success rate is amazing.
Continue to teach her sign, help her learn to speak & read lips, teach her in whatever method is best for her and for your family, but above all celebrate her as an amazing child unique and special as I know you do everyday. Don’t listen to the extremists who might try to tell you there is one right way to raise a happy & successful deaf child.
She is going to flourish and do great things. Give her every opportunity you can, in whatever way that seems right for her. Allow her to embrace her deafness as part of who she is and not see it as a defect that needs to be “cured”. Even people who gain perfect speech and “hearing” with a cochlear implant are still deaf. I know you all have a big journey ahead with lots of changes and adapting to do but Sedona is going to do awesome! I know a lot of deaf people, oral, signing, intelligible speech, no speech, ASL users, and signed exact English users, young, old and inbetween and they are all happy and well adjusted people. Deafness is a part of her but it doesn’t define who she is.

Thanks for posting about your personal experiences. You have a great support system and a lot of prayer on your side.
As the big steps and challenges come, don’t let them weigh you down. Celebrate the simple things and trust God to get you through the hurdles.
Lots of prayers! Keep us posted!

By Natalie|2023-06-12T06:30:50+00:00January 18, 2013|Cochlear Implants, Our Hearing Loss Journey, Uncategorized|5 Comments

The Surgery
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The Surgery

Cochlear Implants, Uncategorized

The Surgery

As I type “The Surgery”I hope that I never have to use a title like that ever again and then I remember that this is the first of two. We want (and it is recommended by her medical team and deaf teachers) for SJ to have bilateral cochlear implants, but right now I can’t even think about it. The nurses at the hospital asked about her getting a second CI and I told them “it’s kind of like giving birth, at first you think you don’t ever want to do that again, but then you forget.” as I say it I am holding my 3rd child who is 5 weeks old in my arms proving my point. I am learning that this part of our journey has to be looked at one day at a time.

Day 1
From the morning of the surgery I gave play by play updates on Facebook and Instagram. This is how the day unfolded via social network…

8:35 am- I got this Brave doll to give to my brave little girl after surgery. The M&M snack mix is for the nervous mama

11:13 am- On our way to the hospital. She’s just relaxed as can be checkin’ out the Toy catalogue.

3:30- They have given her the happy juice and she is about to go in.

3:58 pm- They are behind schedule, but SJ is in the operating room. Thank you for your prayers. I will continue to give updates.

5:59 pm- They are inserting the device now! For those that were wondering the entire surgical procedure takes around 4 hours. So probably an hour and a half left.

7:53 pm- Thank you for all of your prayers. SJ is finishing up right now. We haven’t seen her yet, but the audiologist and ENT had a very positive report. She won’t have the device officially turned on until after she heals, but they do check it once before they sew her back up and her brain responded to the sound when they checked it. They actually said “Every cell responded beautifully” In other words, the surgery was a success! Praise the Lord! We can’t wait to see our baby girl.

9:22 pm- It’s been an emotional roller coaster that I’m sure will continue for a while.

AND this is what happened on Day 2…

J, baby E, and I stayed over night with SJ. Z was at home with both of his grandparents. It was a rough night including some vomiting, a nose bleed, lots of crying along with SJ signing “hurt”, and trying to rip off all of her hospital bracelets, monitors, IVs etc. The hospital staff wrapped up her Brave doll so she has a matching turban. We left the hospital at 10:00 am.

The hardest part has been keeping her from ripping off her head bandage. It really bothers her, but she will become distracted for long periods and is almost used to it now. My best friend sent a package with all kinds of goodies for the whole family and it’s really come in handy. Things like this puzzle are what help keep that girl’s hands busy and away from her head wrap!

Day 3 (today)- SJ seems to be improving every minute. My strategy is spoil her to pieces. She cannot run around, climb, jump, get wet, or pull at her bandage, other than that anything goes. It seems like a fair enough deal to me.

Tomorrow we get to take off the bandage, but she still has to take it easy for another week. Then in 2 weeks she has a follow up with the surgeon, and three weeks until the implant gets turned on! Oh yeah, and I guess Thanksgiving is somewhere in there. Oy!

By Natalie|2023-06-12T06:26:59+00:00November 8, 2012|Cochlear Implants, Uncategorized|3 Comments

SJ’s Cochlear Implant
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SJ’s Cochlear Implant

Cochlear Implants, Uncategorized

SJ’s Cochlear Implant

When J and I first heard about the cochlear implant we thought it was a decision that would best be left for SJ to decide when she was an adult. However, since then we have learned a lot more about the device and the procedure. It turns out that by leaving the decision to her we are making the decision for her because her brain would never be able to acquire or “decode” language later in life anywhere near as well as she can right now during this brief window of opportunity. We’ve done a lot of research and been in touch with many different people; people from the deaf communities, parents of children with CIs, adults with CIs, Doctors, and teachers of the deaf. We’ve watched DVD’s, read books and articles and most importantly we’ve prayed over this decision.

We started with her hearing aids, but her hearing loss is just too profound to really benefit from them. After this trial period we had a 2nd ABR, an MRI, and a CAT scan which confirmed that she would be the perfect candid for the surgery. After that we went to see a Doctor from one of the top Cochlear implant centers in the world. SJ’s medical records were reviewed by a panel of experts at that hospital. Everyone that has worked with SJ has suggested the cochlear implant and they all seem to have very high expectations of how she would benefit from a CI. By this time we finally felt confident in the path that we were supposed to take, the surgeon we were going to use, and which of the 3 CI manufacturers we she would be using.

The surgery will take about 3 1/2 hours. They will be performing the surgery on her right side. This means she will loose nearly all that is left of her natural hearing from her right ear, but the sounds she will gain through the implant will be a dramatic improvement so it’s a good trade. The type of device she will receive is called Cochlear Americas Nucleus 5.

To give a brief overview of what the implant is like, it starts with the internal device which will do the work of the damaged cochlea to provide sound signals to the brain. Then there is the external device called the processor. Picture a big hearing aid (or bluetooth) which hangs over the ear, but it doesn’t go into her ear it is connected to a transmitter that will magnetically stick to her head. I know it sounds very sci-fi, but this “bionic ear” technology is being called the biggest medical advancement of the 21st century and it will allow my daughter to hear!

So as you can see it’s been a major process and a lot of life changing decisions, but we feel confident in the choice we’ve made and have a peace going into this surgery. SJ will be operated on this Monday and will come home the next day. She should bounce back within days after surgery and will have the device activated in about 3 weeks after it has had time to heal. We will keep everyone updated.

By Natalie|2023-06-12T06:23:43+00:00October 30, 2012|Cochlear Implants, Uncategorized|2 Comments