Life is Bliss - Lily's Cochlear Implant Journey

Online CI Surgery

You can now watch a CI Surgery online.  I blogged about this on Jan 21, as an upcoming event.  The surgeon makes it look quite easy and narrates the surgery, along with an audiologist who pops up power point slides with interesting facts like 7,000 (?) surgeries done in the US last year; 120,000 CI users in the world.; benefits of bilateral implants, etc. The surgery lasted about an hour and all throughout signs kept appearing that said "make your appointment now" or "email us your questions."  It was like a medical channel infomercial.  A savvy new approach to medical marketing. 

The Bliss of Blogging

We attended a S.E.E.D.S (Social, Emotional, and Educational Session) workshop held at Boys Town last week. About once a quarter a workshop covering a variety of topics facing parents of children with hearing loss is held. One of the topics this time around was "The Parent Factor: Taking Care of Mom & Dad." The session was an opportunity to talk with parents and professionals about the tips and techniques we've used in getting through the tough times. 

One of the things that seems to have worked for us is this blog. There's something comforting in sharing what you're going through with others and keeping our friends and family close to this amazing little girl. We started as a way to document Lily's life to give her something when she got older as a testament to how far we've all come. We love hearing our friends reference or comment about what they've read on the blog. It makes us feel good to know that what we're writing about is interesting to others as well. Along the way we've also met people from all over the world who've read Lily's story, some seeking advice, others offering words of encouragement. All in all it's been well worth the time and effort. So keep the comments, suggestions, and feedback coming and we'll keep spreading the Bliss. 

Ling Sounds Song

I found a "Ling Sounds Song" off the www.auditoryoptions.com website.   It is sung to the tune of the Wheels on the Bus.  I thought it was creative to incorporate the Ling Sounds into natural song.  Here are the first two verses.  This website also lists some interesting research summaries and lesson content.

The horn on the car goes beep beep beep                       
Beep beep beep, beep beep beep
The horn on the car goes beep beep beep all through the town.

The people in the car eat mmm, mmm, mmm
Mmm, mmm, mmm, mmm, mmm, mmm
The people in the car eat mmm, mmm, mmm all through the town.

Words Inventory

Once again, the results from the Macarthur Bates CDI Inventory are exciting.  This time instead of reporting on the total number of words Lily knows, I thought I'd report on the different language areas in the inventory. 

Receptively, Lily has completed or nearly completed the following language areas:  sound effects and animal sounds, animal names, vehicles, toys, body parts, furniture and rooms. Areas we need to work on:  quantifiers, prepositions and locations, question words, pronouns, descriptive words and words about time. 

Expressively, we still have a long way to go, but Lily has picked up words in many of the language sections (e.g. body parts - nose, people - man), which apparently is a good sign.  It means she is hearing a diverse group of words throughout her day.

Repeating the Ling Sounds

Lily has finally mastered the Ling Sounds (Ah, Ooo, Eee, Mmm, Ssss, Shhhh).  We don't practice these as a separate skill too often, but primarily work them into everyday language.  The Ooo seemed the most evasive, but the repetition of the Choo Choo at Disney helped her achieve this sound. 

Last week our SLP Carole used a hoop (like you would use for needle point) to cover her own mouth and then began to say each Ling sound to Lily.   To encourage Lily to repeat the sounds, Carole has had Lily drop blocks in a box before, but this time she just handed Lily the hoop.  It worked.  Lily repeated all the Ling sounds. 

This is one way to demonstrate that Lily is hearing across the entire sound spectrum and is a good test when Lily first puts her CIs on to make sure everything is working.  Now we will focus on repeating the Ling sounds from a distance and in noise. 

This is a picture of Carole and Lily working/playing.  Toys are always more exciting when they come in a box.

Talking with Lily's Ears Off

We are asked every time we go to the Audiologist if Lily talks with her ears off.  We are committed to having Lily wear her Cochlear Implants during all waking hours, from the moment she wakes up to the moment she goes to bed, so our response has always been, "we don't know."

As Lily gets more masterful at avoiding bedtime, she is awake a bit longer with her ears off.  And now we know, YES she talks with her ears off.  She babbles a lot and uses all the words she knows (40 plus), even though she can't hear herself, to get what she wants. 

A Stop In The Distance

Lily and I took a trip to the grocery store yesterday to get a little ice cream for dessert. Lily loves the grocery store - so much to see, do, and talk about. We were in the frozen food aisle deciding which kind of chocolate ice cream to take home when Lily decided to do a little run down the aisle. There wasn't anybody around so I let her wander to the end of the relatively long aisle. When she got far enough away that I would have had to sprint to catch her, I called her name, then paused, then said "Lily, stop." She stopped, turned around, and ran back to me. 

When I think back to when we were first told that Lily couldn't hear, I had so many worries. How would she learn her name?  How would we keep her safe if we weren't by her side? Thankfully these worries were only just worries. Even in an open space, Muzak-playing grocery store I was able to communicate at a distance and have her respond. She's even started to say her own name - Nilnee. 

Now that we know the technology works, she'll have no excuses for not listening to her daddy. One can dream.

Stimulus Package - Jobs in NE - AVT, AO, SLP/HI

When we started our hearing journey, we were told that we needed to pick an approach to teaching Lily to talk and listen, immediately.  We soon learned that this was a hotly debated subject, with lots of people having lots of differing opinions.   For us, it came down to three approaches:  Auditory Oral, Auditory Verbal or Total Communication.   There are other options, but these three seemed liked the top contenders for a kid who would have bilateral CIs at 10-months old and has no other complicating factors. 

We quickly learned In our town and really state, most of the families and the school system were using the Total Communication method.   This means speaking and signing together.  The Auditory Verbal approach was not even an option, because in Nebraska, there are no certified AV Therapists (AVTs).  In fact, there is not an AVT for hundreds of miles and most professionals have very little experience with the approach. 

However, as luck would have it, we finally connected with the Auditory Oral approach through the Omaha Hearing School.  And that is what has been perfect for us.  After extensive research, we knew wanted an Oral Approach, but at the time (16 months ago) we had no idea how we were going to make that happen or figure out what an ORAL APPROACH actually meant. 

Over the past year, even our public school has moved to a much stronger auditory approach and will hopefully continue to move in that direction.  To me the AO approach seems very close to the AV approach, just some minor differences in where therapy is done and how strict you enforce the looking for other clues as to what was said like lipreading.  Even this seems to depend on the AVT. 

What is missing in all of this are lots of experienced professionals with training and certifications in AO and AVT.  We need more.  And this doesn't begin to address the huge need of of highly qualified SLPs with experience working with kids with hearing impairments and specifically cochlear implants.   Come to Nebraska.  It is a land of unmet need and lots of opportunity to work with world-class programs and world-class kids like Lily. 

The Social Well-being of Children with CIs

Interesting new research study titled Factors that affect the social well-being of children with Cochlear Implants. 

Summary:  The aim of the study was to identify factors associated with the level of social well-being for cochlear implanted children and to estimate effect-related odds ratios for the children's well-being.  Another aim was to analyze associations between speech and language level and the level of social well-being.  Data relate to 167 children with cochlear implants.  The analyzes showed that the communication mode at home was the most highly associated factor.  A statistically significant association was found between the level of social well-being and speech understanding, speech production and vocabulary. Children who were exposed to a spoken language had considerably better odds of having a high level of social well-being compared to children with a mixture of spoken language and sign support of sign language. 

The study is posted on Cochlearimplantonline.com, a blog run by Rachel, a 20-something college student who was one of the first 200 children to have a CI nearly 18 years ago.  She now has bilateral CIs, travels the world, speaks English and French, and is an artist in college studying photography.  She and her Mom are advocates for the Auditory Verbal (AV) approach to learning language for kids with a hearing impairment. 

Bears & Chairs

Lily has added a few more words to her expressive language these past couple of days. Her friend Ivy visited yesterday and they played with a lot of bears with Ivy trying to teach Lily how to say the word. Well we thought we heard Lily say bear last night, but it was confirmed tonight when she pointed to a bear on the Oswald cartoon she was watching and said it loud and strong. Other words she said today were highchair (nice two syllable word), yeah for "yes", and na, na, na with a head shake for "no". 

I think she's also doing a good job of reading our lips. When I was getting gas this weekend I watched her in her car seat point to her ear when I turned the pump on. I instinctively pointed to the pump and said the word to let her know what she was hearing. She looked back at me through the window and mouthed the word "pump." Good stuff!

Elephants & Dinosaurs

This past weekend we went to visit Morrill Hall on the University of Nebraska's campus for an exhibit called Dinosaurs and Disasters. Lily had a blast running from exhibit to exhibit, making growling animal noises, and practicing her pronunciation of "Elephant" every time she saw the bones of a mammoth. She also got to "dig" for dinosaurs and see grad students talk about the science of earthquakes and tornados. Mostly she just had fun being a kid. Here are a few pics...

Mama and Dada - The Sweet Sound

Lily has mastered and refined Mama and Dada.  It is the most wonderful sound.   She now clearly says and understands how to use these names.  She'll call for us and point to us while saying Mama or Dada.  It melts our hearts.  She loves to repeat it.  She'll say Mama and I'll say Lily, over and over and over again.  She is even understanding her own name.  Of course it sounds like "Ily."  The Ls will come later, but she has definitely figured out she has a name.  Sometimes she'll call herself "Me."  

The progress she is making is truly amazing.  We are encouraged by her continuous repetition of sounds and words that seem to be so effortless for her.  Go Lily. 

Variegated Babbling

Tonight Lily was telling me a story.  I think she was retelling me the Oswald story she had just watched with Daddy.  Her babbling is starting to sound more and more like words.  She is constantly talking about something, but we don't always know what it is.  Her babbling is labeled now as variegated babbling.  The following information is from Wikipedia describing what variegated babbling may sound like. 

"Most people are familiar with the characteristic sounds made during babbling, namely reduplicative and variegated babbling. The former consists of repeated syllables, such as /ba/ e.g. 'Ba-ba-ba-ba-ba-ba-ba,' whereas variegated babbling consists of a mix of syllables, e.g. 'ka-da-bu-ba-mi-doy-doy-doy.' Here we must take note that the consonants that babbling infants produce tend to be any of the following : /p,b,t,m,d,n,k,g,s,h,w,j/. On the other hand, the following consonants tend to be infrequently produced during phonological development : /f,v,θ,ð,ʃ,tʃ,dʒ,l,r,η/. The complex nature of sounds that developing children produce make them difficult to categorize, but the above rules tend to hold true regardless of the language to which children are exposed."

Audiology Visit - 9 months out

Went to a mapping appointment yesterday to check Lily's CIs.  We started by going into the booth and testing each side individually.  Results were 20-35db, depending on various sounds, noise levels and speech.   The 35dbs came on Lily's  right side when we think she started ignoring the sounds.  So all in all, improved from last time about 5-10 dbs.  I always suggest turning her CIs up.  However, our Audiologist said that Lily was hearing in the optimum range (20-30dbs) and that since Lily is bilateral, it is louder when she has both of them on (bilateral summation).   The Audiologist also said that below 20dbs there is not much to hear and that the noise can actually interfere with speech perception which comes around 45dbs. I'd still like her to be hearing at 20dbs or better for all sounds.  Maybe next time. They tweaked her maps just a little in the high pitches.  We are returning in three months, then six months and then yearly or as needed.  The picture below is of Lily and her Mom in the sound booth. We again had the opportunity to have Lily's appointment online so friends and family could watch. So cool. Think of all the possibilities this creates.

Baby Lab - 19.5 months (hearing 9m, 1w)

We had another great trip to the baby lab.  One of the reasons is that Mary Pat and Barb, who run the lab, are so positive.  They always say that Lily is doing terrific or fabulous or that she is very smart.  We totally agree.   However, whether it is true or not, their ultra positive outlook on Lily just gives me (or other parents) that little pat on the back that we need from time to time.    Maybe you would call it a psychological edge to keep working hard.  Whatever it is, somehow, it should be incorporated into all therapy best practices.  We definitely hear this from other professionals, but only going to the baby lab every six weeks separates us a little bit. 

Mary Pat also told us that they were starting a similar study with hearing impaired kids (hearing aids) at Boystown, University of Iowa and University of North Carolina.  They used Lily as the model today to demonstrate how to perform the baby tests (blowing bubbles, blowing balloons, eating crackers, watching a little jumping toy and reading books).  I can't say enough great things about the baby lab.  Although it is research, we really get a lot out of our debrief with Mary Pat.

Here are the results today:

Great session today!

1. Exciting to see consonant+vowel+consonant (CVC) = daet (for that)
2.  Lots of babble sequences today, and new: variegated (a mix of different consonants - cool new stage - examples apna, namamaba, neda.  New sounds /l/, ifi (sh), g, maybe  dz - like in jug.
3.  New words produced in the baby lab: that, fish, night night, thank you, more, Oswald (of course), cookie, buck-buck, hello, sheep, shirt
4.  Used duration to make a distinction between on and off (on = a: (long) and off= a? (quick, stopped)
5. Natural understanding - easy for her.  She said this was a biggie.  Lily learns and listens effortlessly.  (That I credit to all our Oral work)
6.  Singing when prompted.
7.  Commenting on past.  Sophisticated and age-appropriate.  This was the idea that something happened, in this case the balloon flew away, and then Lily was commenting on it a few moments later, by blowing and pointing up in the air.  She does this a lot with the hair dryer.  Tonight we ate out on the patio of a restaurant with powerful heaters.  OK we were the only ones on the patio, but it was a lovely day and we wanted it to last longer.  While we were waiting for our food, Lily was making the hairdryer motion and sound.  I couldn't figure out what she was saying, until I listened and figured  out the heaters were making the same sound and almost pitch as our hairdryer.  Great opportunity to talk about how they were similar.  Pretty cool. 

Overall, Mary Pat said the summary word of the session was "Terrific" and that the real big breakthrough today was "daet" or that as in "what's that."  Lily even closed the word with the T.  What a great day. 

Quality of LIfe for Children with CIs

Interesting new article discussing Quality of Life for Children With Cochlear Implants: Perceived Benefits and Problems and the Perception of Single Words and Emotional Sounds which appeared in the Journal of Speech, Language, and Hearing Research, February 2009

A few excerpts:

Study results reported that the children studied reported significant improvement in quality of life because of their cochlear implants, and they also reported low levels of concern about typical problems associated with wearing an implant.

The children's perceived quality of life did not significantly predict speech perception performance at the single word level. In contrast, increased quality of life predicted better performance on the emotion identification task. Age at first use of amplification predicted perceived quality of life.

The findings regarding age reinforce the importance of early detection and intervention for children's positive quality of life with cochlear implants later in childhood.

Laughter - What A Great Sound

Lily loves to laugh. Not only does she enjoy the act itself, but the sound she makes and we make when she does. Last night Heather and Ivy were visiting after dinner. We all sat down for dessert of chocolate brownies and milk. Lily was drinking from her cup that has a built in straw. Somehow she was able to make the straw whistle. This sound caught her funny bone and started a laugh-off between all of us. She would laugh. We would laugh. She would laugh. We would laugh. Over and over. You get the picture.

Tonight we were playing and when I held her over my head I'd give her a little jiggle. She soon figured out that when she would make a sound the jiggling would change the modulation. What fun to play with sounds and what fun to laugh loud and often with your daughter.

Ten Reasons We Chose AB CIs

We read the question "How do you choose the brand of CI" on the CI Circle listserv quite frequently. We thought we'd try and answer how we made our decision of Advanced Bionics, over 11 months ago. 

We made this decision after exhaustive research on the Internet, studying a CI comparison chart, reading all the company material, emailing parents both locally and total strangers, talking with our CI Center, other ENTs, HI teachers, and emailing CI researchers. 

We felt this was a big decision, although the CI manufacturers (Advanced Bionics, Cochlear and Med-El) all seem to get similar end results.  At the time we made our CI decision, there had been very few studies comparing the brands, especially in children.  The studies that do exist are now old and out of date as technology has changed. 

Here are our top 10 reasons that we chose AB.  Of course science and innovation continue to improve (thank goodness), so we made the best choice for Lily at the time and tried to predict which manufacturer would continue to come out with the best technology to allow our daughter to hear. 

1.  AB Harmony BTE is lighter weight than Cochlear Freedom and looked a little sleeker.  It also has a solid head piece and not a wagon wheel design. 
2.  Option of a Bodyworn Processor with nothing on the ear (great for babies - we've loved this, although at first it seemed huge) and/or a Behind the Ear Processor.
3.  The internal device is set up for easy upgrades in the future.  Lots of space and flexibility. Devices now being used are only using about 10% of the total computing capacity. 
4.  AB has independent output circuits allowing current to be sent to each electrode individually creating the option to steer current in the future or fire individual electrodes. This is how they get the HiRes 120 mapping strategy (see reason #8).
5. The "device failure" issue is now not an issue, since the vendor manufacturing the faulty equipment was replaced two years ago, AB has just as low number of failures as the other companies.
6.  Rechargeable batteries are cheaper/last longer (although you can use disposable batteries with the BWP if you need to and a new battery pack option is about to be released for the BTE similar to Cochlear's popular battery pack).
7. T-mic that fits in the ear.  Makes using the phone and ear buds for Ipod's easier and optimizes the ear shape for sound. 
8.  HiRes 120 processing strategy.  Probably one of the biggest reasons.  Fast processing strategy. Creates 120 virtual channels to achieve the best sound for the user, primarily for music. 
9.  Widest Dynamic Range at 80 dbs. Studies seem to indicate that a wide IDR will help a lot in noisy situations, like a classroom.  "Normal" hearing is in the range of 120 db.
10.  AB has a 3-year warranty for the body-worn, and they extend the warranty another 3 years for the BTE.

We have been very happy with our choice (so far).  Knock on wood.  Is there a computer equivalent to this?   Lily's CIs have worked very well and nothing has had to be replaced, not even a cord.  Now we want the AB scientists to work night and day to improve the technology, so hearing impaired people can be on an even playing field (or hear better) than normally hearing people.  We ask so little :). 

CI Airport Security

When we go though airport security, I always have TSA pat Lily down, instead of going though the metal detectors.  This way, she doesn't have to take the CIs off and the TSA is more than happy to do it.  Lily is never thrilled about the patting, but it is usually quick. I have an official "I have a CI" card from Advanced Bionics if we are ever challenged.

Here are some quick facts about CIs and Airport Security.

Metal detectors and security scanners will not damage the implant or sound processor. However, individuals with a CI passing through security metal detectors may activate the detector alarm.  CI users also might hear a distorted sound caused by the magnetic field around the security scanner door or hand-held scanning wand. Turning off the sound processor before passing through security screening will ensure that those sounds, if they occur, are not too loud or uncomfortable.  TSA outlines the specifics.

X-ray machines will not damage the sound processor; however, x-ray machines have the potential to damage the electric microphones used in most cochlear implants and hearing aids. 

Spare lithium batteries, which CIs run on, are allowed in carry-on baggage if they do not individually exceed 8 grams (~100 Watt hours) of  equivalent lithium content. 

In addition, the FAA has confirmed that Advanced Bionics cochlear implant recipients are exempt from powering off their sound processors when instructions are given to turn off cell phones, music players or anything with an on/off switch. The FAA regards the cochlear implant in the Hearing Aid category and hence is exempt from being switched off.   For more information, see Advanced Bionics FAQ for air travel.

Final Super Bowl Reaction - Exhausted

Lily's Second Half Super Bowl Reaction

Lily's First Half Super Bowl Reaction

Disney CI Friends

During our Disney adventure we met lots of other people who commented or asked questions about Lily's CIs.  When your child gets implanted, they should give you a CI Ambassador card.  We have conversations about Lily's CIs, with strangers, nearly every time we leave the house. Disney was no exception.

We met a woman who was in school to become an audiologist.  She commented that being implanted bilaterally, so early, was wonderful and where did we have it done.    When we said Boystown, she just shook her head and said "Ahhhhhh, that is why."

We also met a family from the UK whose niece just received a CI. They were asking questions like if we signed to Lily (nope) and if she was "turned up" all the way.  I am not sure what the latter part of their question means, except maybe their niece had just recently received her CI and they were still adjusting her map.

Finally, we met a mother who told us she had two adult daughters who had profound hearing loss and that in the next few months, one of them was going to get a CI for herself and the other one was going to get a CI for her new baby son.  This mother/grandma, of course, was watching Lily (like a hawk) run around the restaurant and come back each time we called her.   The mother told me (one mother to another) that her daughters have both been extremely successful in their lives and that somehow the hearing loss had taken their relationship to another level.  Sometimes it is amazing where advice, guidance and confidence comes from.

We're still looking for Mickey or Minnie with a CI.  I am sure it's only time. 

Pics From Disney

Lily enjoys her front row seat at the Lion King show at Disney's Animal Kingdom. If you want to check out more pics from our trip to Disney World, head on over to Lily's Latest Pics (in the column on the right). Enjoy!