Before Vivian had cochlear implant surgery, we were warned that it is very common for music not to translate. In general, recipients can pick up melodies, but lyrics are extremely hard to make out clearly. Our aural habilitation therapist told us if you want her to sing along to music when she is a teenager like everyone else, you need to start NOW! Thinking back to my childhood and the years spent listening and singing along to music in my room, I knew we had to hit this hard with Viv.
So how does one get their elementary aged implanted child to identify pop music on the radio seamlessly? Here’s how we did it.
We first enrolled her in regular old piano lessons at age 5 (BEST DECISION EVER….BEST HEARING THERAPY EVER). She had 9 months of piano with hearing aids before the first surgery. She then continued for 4 more months with one CI and one hearing aid, then went bilateral. The whole time while playing! Fast forward 4 years and she is still playing. She can correct herself by ear when she plays a wrong note and we continue working on pitch with singing. She used to sing in perfect pitch…not anymore. Sadly, that American Idol ship has sailed.
Prior to any hearing loss, Vivian loved Taylor Swift…already at 3 years old! She would listen to her videos from Fearless over and over again singing along in tune. Now, we play “Name That Tune” in the car constantly. Any Taylor Swift songs are instantaneously identified and I swear that is because she knew her voice before implants. With any new pop song, she gets it on Kidz Bop and always listens to the song with lyrics. Those lyrics are quickly memorized and then, and only then, can she pick them out in a song. So now we play the radio loud in the car and I flip through the stations stopping on the popular songs and wait til she notices the song. She and her brother have a constant game going on who can name the song first.
The 2014 holiday season marked the first time EVER that Vivian was able to identify Christmas music on the radio. Yup, from mid-November through Christmas Day, Mom drives with only Christmas music on in the car. The background in piano helps here a lot. Each holiday season she gets a new Christmas piano book which covers more than a dozen different songs. And the music on the radio is so rich and diverse. Not only is she identifying the familiar melodies, but so many different artists and styles of singing too. You have the most recorded Christmas song, Silent Night, sung by Bing Crosby, Nat King Cole, Kenny G, Elvis, Alvin and the Chipmunks, Josh Groban, The Carpenters, Mariah Carey, Peanuts, Faith Hill, Aretha Franklin and The Everly Brothers. All different genres of music, all different voices, all different arrangements, yet the same lyrics and she can nail each one!
We also have worked on naming the artist based on their unique sound. We have regularly worked on Michael Jackson, Billy Joel, Prince, Elton John, Bon Jovi, Queen, The Beach Boys and Elvis. I keep the list small, but each of those artists have songs that are played on the radio constantly. I ask the kids to listen and then guess. Again, it is a contest between Vivian and her brother! Winner gets bragging rights…at least until the next song.
Lastly, we constantly go to outdoor summer concerts. Sometimes they have a cover band that does one specific artist. So far this summer we have heard Billy Joel, Elton John, Neil Diamond, Chicago and Elvis. Weeks before each concert, I start checking out their Greatest Hit CDs from the library. We listen to those songs in the car to get familiarized with them. Name That Tune gets pretty fierce between my daughter and son. We then arrive at the concert early and ask the band if we can get a copy of the playlist. We usually get it emailed to our phone after explaining why we want it. Then we download the lyrics in our seats so she can follow along during the concert. It makes the “So Good, So Good” lines in Sweet Caroline more fun once she knows what the crowd is supposed to be yelling! And sometimes, just sometimes, you get lucky and score a picture with The King himself!
As summer is winding down, my anxiety is perking up with the new school year for Vivian. There really is no reason to fret, but I still do. This year everyone is new. New teacher, new speech teacher and new hearing itinerant. We were so sad to lose the last 2 teachers. Vivian excelled so well with both of them.
So anytime Vivian starts a new class or school I have either the short and sweet “ear” talk with the teacher/instructor or they get a more in depth “ear” talk, depending on the situation. Now school teachers (including gym/art/music teachers, nurses, lunch helpers, car line helpers), camp counselors, Sunday school teachers and all coaches get Vivian’s handout. I thought I would share it here in case someone else might find it helpful for their child and maybe some friends might learn a trick or two.
A few nights ago, Vivian asked her mother THE BIG question out of the blue: “Mommy, am I deaf?”
Ouch. Knife to the heart. Mommy needs to think carefully and choose her words wisely….”Well, what do you think?”
“Yes,” Vivian decides. Knife twists a bit deeper.
“Well, can you hear with your ears off? ”
“Ok, well let’s list all of the things you can hear without your ears on.”
They listed quite a bit and decided on a kinda/sorta deaf definition. Mommy still has a hard time with that one.
So is Vivian deaf? Well yes and no… or maybe she’s just deafened. But is she Deaf? No, not really.
If that doesn’t make sense, let me explain. Capital “D” Deaf is a culture and a community. The Deaf primarily communicate with sign language or forms of communication other than speech. They integrate with the hearing community through many means, such as using sign language interpreters and captioning services. Hearing loss is not a disability, just a way of life.
(it should be noted that some Deaf individuals are phenomenal lip readers and can carry on an extended conversation with a hearing person)
When we made the decision to give Vivian cochlear implants, we knew this would likely take her and her immediate family out of the Deaf community. She could rely on the spoken language she had already learned before her rapid hearing loss. She never needed to learn sign language.
And so we find our daughter on her way to 2nd Grade–continuing in the neighborhood mainstream classroom–with lots of friends, a busy schedule of social activities such as Girl Scouts, sports, dance and a less-social endeavor, piano lessons.
That said, Vivian needs to try hard to be a part of the hearing community despite her deafness. Here are some of the things that define a lower-case “d” lifestyle, from our family’s perspective.
– She hears great with her implants on in a quiet room.
– She relies on lipreading in a noisy environment.
– TV is okay, but captions and subtitles make the experience so much better.
-We now bring an iPad with preloaded closed captions for movies at the theaters (“Subtitles” app in iTunes). She can’t make out the words without it…cartoons and The Muppets are the worst…can’t read their lips!
-When Vivian is home, the furnace room door is shut so she can hear better.
– She loves to listen to music, but it’s better when she can hear it on YouTube where people often insert the lyrics.
– Vivian’s “routine maintenance” includes disassembling her processors at night just before bedtime and putting them in a drying case.
– Her mother begins each morning putting freshly-charged batteries in her processors, changing cap covers, putting FMs on for school and assembling cap/cord/processors.
– With her processors off, she can control her voice to whisper when appropriate, or speak at a normal level….though her normal voice is beginning to get quieter.
– Sometimes her headpieces fall off her head, and she must reach around her shoulder to grab the cord.
-Going swimming? Rain? Sprinkler fun? Water guns? Playing in the snow? Wait a minute, need to change her ears. They are wet? Ok, need to put them in the dryer and wear your BTE ears til they dry off.
– She has the luxury of falling asleep to silence–even with noisy neighbors. However, she does not like being alone in her room at night with her ears off. Mom has to sneak off after she falls asleep.
– She is perfectly happy waking up in the morning and moving about the house in silence, even playing with her 4-year-old brother, who must often be reminded: “She didn’t hear you–she doesn’t have her “ears” in yet”
-She gets help hearing at school with an FM system. Sometimes she has to alert the teacher that it isn’t working. Advocate for herself!
– Her rechargeable “AAA” batteries in her processors sometimes run out unexpectedly, and leave her parents scrambling to pull out backups from our scattered stashes.
-New class/new teacher? Sometimes, depending on the situation, they either get my 5 minute run down of Vivian’s history/abilities/helpful hints OR they get my one page handout with her pix on top describing the list above in more detail. Almost time to update the sheet to read “2nd grade!”
–Paul and Becky
It has been a long time since our last blog entry, and that’s unusual since all of our news has been positive since then. We learned first hand that the insurance industry has gone through quite a transition this year. So we developed a strategy for Vivian early on this year. Excel in everything, so we can stay far away from doctors and therapists offices.
Vivian’s recovery after her revision surgery has been swift. Only 3 weeks after her surgery, she was scoring near her best levels in word recognition. As of her April 25th appointment, she did not need any new mapping (reprogramming) and was scoring over 90% in word recognition. Highest ever with that ear! Her surgeon was also successful in saving her residual acoustic hearing, again with an electrode not designed to do such.
Now is a good time to post another audiogram. This one includes her residual hearing, as well as her “electric” hearing from her implants. The black line at the top in the audiogram is what she hears with her implants. The bottom black lines are the natural, acoustic hearing she has leftover. Remember that her hearing loss is progressive; that acoustic hearing is gradually disappearing. We are happy, however, that her inner ear workings are still in tact.
In other news, Vivian has had a few new experiences this year. Our family went to Disneyland in March. She finally could hear the Disney music as we walked in, as we waited in many lines and as we watched the fireworks. And most of the time she got the song right. Rewind 2 years and she had no idea music was playing in most places there with her 2nd set of hearing aids. I remember thinking, “Really, you can’t hear the music?”–then tearing up a bit. We also got to connect with another little CI girl, Maddie, who we met through this very blog!!!
Vivian also made the change from ballet to Hip Hop dance this year. And what a difference! She told me ballet was too boring, slow and QUIET! That was my cue to make a change. At the recital, she was much more in synch with the Hip Hop music and just loved it! We also noted a big change with her piano playing. She still corrects herself by ear (which always makes me smile) but now is singing along in key. She had always sang in key since she was a little girl singing along with the Backyardigans, Disney princesses and Baby Einstein. But this past Christmas was something else with anything above a middle C. Unbeknownst to her, she just couldn’t stay in pitch. Thank goodness it seems to have corrected itself with the new CI. After taking on soccer in the fall for the first time, she has now taken on baseball! While in hearing aids, our doctor had advised her not to do any contact sports. Now with the CIs she can play any sport…ok, anything but boxing. It is so much fun watching her play with the other kids. Too bad that 90% accuracy doesn’t translate when she wears the huge batting helmet. But we stress the a similar philosophy here. Excel is everything, so Mom doesn’t go hoarse yelling.
4:15: Mom and Dad up.
4:45: Vivian gets apple juice and Jello, breakfast of champions.
5:15: We are off.
6:15: Arrived at Children’s
6:45: All checked in, in the pre-op room, vitals checked, waiting for doctor to arrive–about an hour wait now
8:00: Red sleepy medicine NOT working, a very upset Vivian. Mom accepts team’s request to go back with her. Mom gets dressed in full body snowmen-like suit, complete with blue hair bonnet. Vivian is not amused, Paul very much is.
8:15: Mom and Vivian enter surgery room…she is still very upset. Finally the mask with red sleepy medicine works. A kiss good night from Mom.
8:45: Mom and Dad have found their favorite short order cook in the cafeteria. We are recharging.
10:20: Wow, just got a call they are closing her up! Should be able to see her really soon!!!
11:50: Got the all clear to join Viv. She is really tired, but not in pain. Talked to the doctor…everything went as planned. Same type of unit put in as the one that was removed.
12:15: Moved to recovery…still very sleepy, but feeling ok. Resting now. We hope to get out by 3.
3:15: She is fed, dressed and her release papers are in the works!
6:30: finally home…what a snow storm! Vivi still has a lot of pain..it comes and goes. Bad, bumpy ride home in the snow. Lots of tears coming and going. But she is eating and Mitch is home too!
Thanks for all of the prayers and encouraging words!!
November proved to be a pretty rough month for the Johnson family. We found out on November 2nd that something was terribly wrong with Vivian’s left CI – her first implant.
We had known that she hadn’t been hearing as well with that ear since April during her weekly Aural Habilitation sessions. So we had many follow up appointments with the audiologists and even the device manufacturer. After our first visit in April, they found that one electrode began to fail. A 2nd began to fail in May and a 3rd failed in November. The interesting thing was that each of these electrodes was sequential in the array. Of 16 total electrodes, they happened to be the last three on the array (last to be inserted during the surgery), #16, #15, #14.
Each time a circuit was noticed to be failing, it was turned off, and her “map” was reprogrammed. This made Vivian hear much better until the next one began to fail. For 6 months, though, that ear has never been as good as it was in the few months after the surgery. Once the 3rd electrode failed, they knew this was far from normal. In November, a mid-month CT Scan revealed that part of the electrode array had slipped out of her cochlea…3 circuits to be exact–16, 15 and 14. We soon learned that this is an extremely rare condition called “electrode migration.” As with Viv’s hearing loss, there is no clear reason why this happened. About 1% of cochlear implant patients need revision surgery; most need it due to some sort of failure with the internal device.
Subsequent meetings were held with the device manufacturer, the audiology team, and surgeon to determine a game plan.
The plan is to have surgery to remove the old device and replace it with a brand new unit. We are penciled in for a New Year’s Eve surgery. However, we are on the cancellation list for all of Tuesdays/Wednesdays in December. The surgery shouldn’t be as intense as the previous 2 surgeries, as the trail for the electrode array has already been cleared. It shouldn’t require as much drilling. We’re hoping that makes a big difference for Vivian’s recovery.
I still can’t believe this happened to Vivian, especially since she had been doing so well after her surgery. And the timing of it–right in the middle of the holidays, flu season, her b-day month—just something that this Type A Mom never would have chosen.
So we pray. We pray that everything goes well like it has the past 2 times and that this is the final surgery for her and her ears are top notch AGAIN there afterwards. Please join me in a couple of extra happy thoughts for our little girl.
Way back on May 8, 2012, we got an unexpected call from our Pastor asking if he could bring over a Prayer Shawl for Vivian. He brought over this beautiful blanket that was handmade by one of the women from our church. He wrapped it around Vivian and said a prayer. Pastor Mark knew exactly what she would love, bright pink and purple and white! Blends right in with her room!
So each night, I continue to cover Vivian in her blanket. And I say the following prayer:
God bless my Vivian. Keep her safe, keep her healthy. Keep her ear (touch with blanket), eye (touch with blanket), eye (touch with blanket), ear (touch with blanket) working. And let her sleep all night without bad dreams and let her wake up happy in the morning. Amen.
Our night time prayers need to be short as she always has her ears out at bedtime. At first she could hear a little bit with her hearing aids out, but not voices anymore. She knows the prayer by heart and reads my lips as I recite it.
If you look back at her surgery pictures here and on FB you will see the same beautifully hand knit blanket at both. They even rolled her back into the operating room with it on her!
Viv had been really concerned about the future of her ears and eyes when I told her we wouldn’t be taking the blanket on trips. So we now have a small bag of snippings from the blanket that we travel with. We make sure wherever she is (even if she falls asleep on the couch) we don’t miss a prayer with the blanket at night.
It is so special to us and just thought I would share the story and a picture from tonight’s bedtime.
I picked my little girl up on June 5th just like any other day. There was no formal graduation like the ones I saw scattered throughout my Facebook pages. Not even a short presentation or certificate honoring the momentous occasion. No handmade caps with yarn tassels here, just simply the last day of school.
But she made it, she finished Kindergarten and had a report card in her backpack that boasted of the highest marks for her academics. Ok, so I will live with the lower mark for “striking skills” in gym. After all, her doctor forbade all contact sports when she wore hearing aids. How is one to be good at hitting balls when you’re not supposed to be around them?
What an amazing school year this girl had! Sometimes numbers do a better job at telling a story than words. So here are the numbers. Not once but twice, my little girl had major surgery which involved putting a drill to my baby’s skull. She missed a total of 10 days of school, all in some way related to the CI surgeries, not illness. During the school year, she went to an even 100 appointments due to her ears. The breakdown? 19 doctor/audiologist appointments, 25 aural habilitation appointments, 26 appointments before school with her hearing itinerant and 30 speech classes at school. I’m sure I missed some, but those are the ones that made it into my planner.
So when seasoned parents tell me “It goes by so quickly, they grow up before you know it” or when I read the caption “How can she be done with Kindergarten, didn’t I just bring her home from the hospital yesterday?”…neither comment strikes home with me. Maybe it’s because I’m a stay at home mom, even on weekends. Maybe it was the sleepless nights I spent cleaning up reflux vomit. Or maybe the sleepless nights I had tending to my daughter who was becoming more and more afraid of the night because things sounded warped and weird and then just became silent all together. Or maybe it’s the 100 appointments in 9.5 months thing. I, for one, will never have that guilt feeling of where did the time go. I have been with this child more often than not.
I often wonder what we would have done with all of that extra time had her hearing not changed? Maybe I would be a better cook, maybe my walls would be painted by now? Maybe she’d be better at hitting balls? But we made the most of the time together. Vivian read books in the car…I always had to bring three thick chapter books for the hour long car rides to Westchester: one for going, one for during and one for the ride home. We practiced talking with the new CIs with plenty of background noise (traffic, radio, etc) with no lip reading. We tried picking out the main words and singing along with great girl songs by Taylor Swift, Cyndi Lauper, Beyonce and Madonna. Sometimes we would stop and shop on the way to get Mitch.
Mitch, on the other hand, is bound to get the highest mark for “striking skills” after spending so many afternoons with Grandma and Grandpa. Playing ball is one of his favorite things to do, especially if Grandpa is pitching. Even though he gets bounced around on these Vivi days, he is having quality time with some wonderful, quality people!
Vivian is super excited about first grade and going to school all day! She already tested her ears one day in the loud lunchroom. She ate with her older cousin, Caitlin, at the third grade table and had a blast. No big issues there! We are wrapping up aural habilitation before school starts and the audiology appointments are every 3 months now, soon to be every 6 months. In fact, we ONLY have 2 appointments all together in June. Our schedule hasn’t been this doctor-free in a long time! Maybe I’ll learn to make a new dinner or two. Maybe Viv will practice her striking skills a bit and we’ll have Mitch pitch.
Here’s a video taken on our vacation a few weeks ago. Vivian got to take both of her AB Neptune processors in the pool for the first time. The waterproof feature of this style of processor was one of the selling points for us, and we’re happy that we’ve been able to finally take advantage of that after a long fall and winter. We can tell these are going to be helpful over the summer as she continues her swimming lessons.
Note towards the end of the video that Becky is telling her to use “big arms” by touching the foam noodle, and Vivian correctly responds.
PS – Yes, I had her put her goggles on the right way. Yes, I wish I wouldn’t have used the term “installed”!
It’s been a wonderful start to the week for us. Vivian had her implant mapping session on Monday. It was determined that she is now at “mapping stability”, meaning her electrodes are programmed to the point where she hears a range of normal sound levels without being overstimulated. She hears as low as 20dB across the board. It is basically up to her brain to take over now and make sense of everything. This is fantastic news. Generally, implant patients reach this milestone after about 3 months. Her left ear did it in 6 weeks, now the right in just 3. Wow. In light of this success, our audiologist allowed Viv to start using the ClearVoice strategy, as well. We had to wait a few months for the other ear, so we were very happy about this.
Today was aural habilitation day, and the right ear did just about as well as the left. One of the goals here is to be able to repeat 5-word sentences. She is getting most of those correct. Even last week (week 2) was a success. We definitely notice that it is getting eaiser to communicate with her around the house, too. Although, things still do get difficult in very noisy situations, but less noticably than before. And since her brain seems to be so eager to adapt to all this, the therapist brought up adding music to the rehab process. Music can be very difficult for a CI user. Yes, Viv does take piano lessons, but that’s a little different than hearing a song on the radio. We are discussing now if we should “strike while the iron is hot.”
What a strange feeling it is to be this optimistic!