Life is Bliss - Lily's Cochlear Implant Journey

Our daughter Lily Bliss was born in June 2007 with profound hearing loss. At 10 months old, she became one of the youngest in Nebraska to receive bilateral cochlear implants. This blog is the story of our hearing journey and the proof that Life really is Bliss.

Captioning, Video Conferencing, and Transcripts in the COVID era

Something good that has come from this global pandemic and staying home is the new and renewed interest in online captions and transcriptions. Here's a new article from the MIT Technology Review describing the challenge and some solutions.

The pandemic made life harder for deaf people. The solutions could benefit everyone

We tested Otter.ai, which records/transcribes live conversations using AI, during an online training for which live captioning was actually provided. The Otter.ai tool provided us with captions, on our phone, faster and they were more accurate than the captions provided on the computer. We were also able to save the captions/transcription, instead of only being able to see the captions in real time.  

For video captioning this spring, we had one of Lily's teachers download all his videos into YouTube and send her a private link. This way the videos were automatically captioned, without too much effort. The school didn't provide captions on their VR video platform, although it looks like they could pay for them. Lily can hear the online videos pretty well, but she definitely prefers videos with captions, especially if you can't see the teacher's face.

Lily also used Zoom for many of the office hours her teachers held. She could follow the conversations well if the teacher was talking, but it was much more difficult if it was a group chat, just like in the classroom. This is where captions could have been a big help. Looks like Zoom is working on incorporating a caption tool for the end of summer (currently there is a third party work around), but Google Meet, Skype, and Microsoft Teams already have this feature. Others rave about AVA's integration, but we haven't tried it.

http://connect-hear.com.  This site is a terrific Knowledge Base of resources for people who are deaf or hard of hearing. It includes things like mask resources, video conferencing options, captioning, and assistive technology. Definitely a site to investigate.

Finally, in another life, we produce lots of podcasts. We use a tool called Descript to create podcast transcripts. Everything we produce now has captions and it's quite a bit of work to make sure the captions are accurate. However Descript gets us to about 75-80% of the way there.

7th Grade Cello Update

Lily is still playing the cello in the middle school orchestra. In fact, this winter she won an award from her orchestra teacher and local friends of chamber music group that was described as: 1) A student that exemplifies teamwork, camaraderie and positive communication with their peers and 2) A student who perform individually very well, but that takes second place to the traits of an effective member of a musical ensemble: teamwork, camaraderie and positive communication. Who would have ever guessed?

Although school ended at Spring Break and the final concert was never held, Lily put on a few online concerts for her family. In this video, she plays a piece she was supposed to perform, along with the rest of the 7th and 8th grade orchestra. Hard to understand all of the music since the cellos rarely have the melody, but you can see the progression of her skill, rhythm, and listening abilities. 

 

Hearing Birthdays - The Best Part of Me!

Going through some old photos and social media posts and found this one celebrating Lily's hearing birthday last year.

 

 

Pandemic Update

Global Pandemics have a way of reconnecting you to old favorite things, and spending time where it can make a positive impact on the world. This blog has brought so many wonderful people into our lives from all around the country. We've heard countless stories of how our journey has picked people up and given them hope for their own hearing journey. So it's time for an update.

Lily is now almost 13, hearing more than 12 years. She's finished 7th grade with all As and is flourishing in all aspect of her life.

She was recently featured on the Nebraska Girl Scouts' podcast, discussing her thoughts of the coronavirus and staying at home. This interview was done through Skype with no captions and wearing headphones over her CIs with t-mics. She was also featured on Pincurlgirls.com. It's an interview about her cochlear implants, participating in hearing research, and being brave.

 

Listen to the Girl Scouts' Podcast Interview with Lily

KZUM · Be You, Be Heard #10 - Hey Girl, How Are You Doing?

Listen to the Pincurl Girls Podcast interview with Lily

Lily Plays the Cello - Year 2

This is Lily's second year of cello.  As a 5th grader she is currently preparing for her upcoming winter concert. It's pretty amazing to see her listening to the notes, rhythms and melodies so carefully.  She is now working on tuning her cello and knowing if the notes are sharp or flat.  We never dreamed that this would be possible. 

Here's a very interesting recent literature review on music and cochlear implants called What does music sound like with a Cochlear Implant.  Very technical, but worth the read.  

However, Lily would disagree with much of the research.   She believes it's hard to understand how kids implanted pre-lingually with cochlear implants hear music. 

 

My (Lily's) first blog post, and more

Hi guys. I bet you've been waiting for this for a long time. Yes, I have started writing my blog (with some help from Mom and Dad of course).  

So guess what? We got a puppy. His name is Finley, and he is a Beagle/Bichon mix. I was thinking about training him to be a hearing dog. Any tips? Do any of you have hearing dogs? Let me know in the comments.

I have recently been watching this YouTube channel called Good Mythical Morning (GMM) which I love because they (accurately) caption all of their videos. (Thanks Rhett and Link!) Let me know if you watch Good Mythical Morning in the comments section. I think that's it.

My brother Bodie is doing great. He started Kindergarten this fall and has started to read chapter books.

Thanks to all of you who have supported our blog since the beginning and told us about your amazing hearing journey. Thanks!

2017 Lily Update and More

We think about Lily's hearing everyday, but life now seems pretty normal. Hearing doesn't limit Lily's activities or experiences.  In fact, she seems to gravitate to all things talking, listening and music.

I wanted to summarize Lily's activities and growth through 2017 starting with two videos that featured Lily as a guest host.  These videos were targeted to fourth graders and highlighted special things about Nebraska.

 

Advanced Bionics Q90s - Review by a 4th grader

We have loved Lily's AB Neptunes, but decided it was time to move to AB's Q90 Naida ear-level processors.  

Lily's experience and ease of change has been positive.  Here are the Top 8 things we like about the AB Naida Q90s.  

• Lily says she could hear at a level 8 (out of 10) with her Neptunes, but can hear at a level 9 with her Q90s.  
• The Neptune programs rolled directly over to the Q90s so the sound is very similar (according to Lily).
• The ear-level processor wearing hasn't been a problem with the new weight on her ears or keeping them on her head except when she's running or reading upside down.  However I can't imagine how you would keep them on a baby or small child.  Neptunes are still dreamy for this young population and have fewer parts to break.    
• Lily doesn't turn her head so dramatically when trying to hear in difficult listening situations because the T-mics are now in the center of her ears, instead of the microphone being on the side/back of her head. 
• Lily can now use headphones like all the other kids, in addition to steaming music or sound via bluetooth (something other kids can't do!)  
• No more tank tops to hold the Neptune in place and long cords running from the headpieces to the processors. Although she was sad to see the tank tops go.  
• There is much easier access to the Q90s to change the programs or adjust the volume, although Lily prefers set it and forget it.  Her programs include a regular program with auto zoom and wind block, duo phone and super stereo zoom.  
• Lily likes the automatic auto zoom feature that "turns on" in noisy situations. She can hear the sound cut out for half a second before it turns on, however the FM overrides this feature when it's on.  
• Three-year warranties for all the components.  

Things we'd like to improve:

• Lily longs for complete static and waterproof processors. However the waterproof setup of the Neptune totally changed our lives and Lily will still wear them for water activities. The Q90s have a water proof box we could have selected, but we chose to stick with our beloved Neptunes for water.
• The only battery that has an FM connection is the 170. For Lily, the FM is worn during every school day.  The length and weight of the battery and FM receiver becomes quite long, especially on a child.  The 170 batteries last Lily about 14 hours, which is close to a full day but sometimes we have to change them.
• None of the new "mini" batteries are included in the initial purchase of the product.  Especially for children, this seems like an ideal product that would be used on the weekends.

Phonak Pen Review - Experiences of a 4th grader

Lily has been testing out the Phonak Pen for a month now.  We're impressed! 

The primary objective in purchasing the pen was to try the omni-directional mic in the lunchroom for a better listening experience.  Lily has always struggled in this noisy environment and nothing except sitting in a different room helps.  The omni-directional mic, which is incorporated in the pen, seems to be a great improvement over the traditional directional mic of a Phonak Inspiro in this situation, and allows Lily to hear multiple kids at the same time in different directions.

The challenge in the lunchroom comes when the students get too loud and instead of being able to figure out what voice to amplify, the pen amplifies everything including dishes clanking and voices from other tables that are not involved in the primary conversation. At this point, the pen needs to become a traditional directional mic to be useful.  However, the pen's small and light profile makes it less intrusive to hang around someone's neck and truly feels and looks like a pen.  

Lily is also using the pen on the playground.  The pen's capacity to "beam" when pointed at someone, gives Lily increased hearing advantages.  On the playground, she either wears the pen on her neck, keeps it in her hand to beam or hangs it on another kid if they are running around. The disadvantage here is that the range for the pen is much shorter than the Phonak Inspiro, but Lily is use to staying fairly close to her peers to hear the conversation.   

We have not been able to try the new Phonak Inspiro Touchscreen which incorporates the microphone into the transmitter (eliminating the long cord and small microphone that gets tangled on everything) and also has an omni-directional microphone when set flat. This is a great improvement for the Inspiro. Unfortunately, the pen doesn't network with the Phonak Inspiro, which is a major disappointment for these different use cases, but it does network with other pens.  The pen also doesn't network with the classroom media hub. Lily must connect with each device as she changes between them and while this isn't hard, it does require a little time and knowhow.    

As for durability, the Inspiro feels slightly heavier, like it could withstand more abuse, but so far we haven't had any problems with the durability of the pen.  The pen does come with a lanyard which cleverly attaches to the pen's clip.  

Another time that Lily uses the pen is in her reading group.  Again Lily uses the omni-directional feature to hear the kids around a table and if needed, she or the teacher will slide the pen on the table closer to the quieter students.  Lily prefers this set up to having additional large student microphones around a table.  

Phonak has also come out with a flat low-profile table microphone, which looks ideal in this "reading group" situation but it has a fairly high price point, so we haven't had the opportunity to try it.  

Overall the Phonak Pen has been a great addition to our hearing technology tools. 

Circus Musical Performance with a Solo!

When you dream about your child's future with CIs, singing in a musical doesn't seem possible. However, Lily just completed a short musical and dance show, with a circus theme, and she even had a solo. Lily sang one of the verses from Join the Circus and was just as good as her peers. Tears of joy! Pretty amazing experience!

Lily discusses her new cello and plays jingle bells

Lily discusses her new cello journey and plays jingle bells after a month of lessons at school.  

Never did I expect Lily to take on playing a stringed instrument. She takes great joy in making the music and being able to hear whether her notes are sharp or flat.  Who knew this would be possible.  A real dream come true.   

The video also allows new families on this hearing journey to hear what a 9-year-old with CIs might sound like.  

 

Sapheara Live - Kids with Hearing Loss Need Super "Hear"oes too!

We love Marvel Entertainment and The Children's Hearing Institute's Super Hero Sapheara.  She has bilateral pink CIs, a pink cape and boots, and a long pony tail.  Her super power is the pink gem around her neck that offers a protective shield to those around her.  

It's important for us all to have super heroes and Lily has certainly found one she adores.    

 

Sapheara and Blue Ear - Back in action thanks to The Children's Hearing Institute and Marvel Entertainment

The Children's Hearing Institute has announced another collaboration with Marvel Entertainment.

Blue Ear and Sapheara, Super Hear-O's from the comic book Sound Effects (which was awesome!), are back in action again.

CHI has released Scene 1: Rooftop Rescue (Click HERE to download and print) and Scene 2: Silent Threat (Click HERE to download and print).  Scene 3 and 4 will be released in the coming months. Such a wonderful gift to our kids!  

Lily is already planning on how to replicate her costume.   She was also thrilled to see that Sapheara may be wearing AB CIs.   The mention of an "Electromagnetic Pulse Generator" sent chills down our spines with the thought of wiping out every electronic device in the city!  YIKES  :)  Find out what happens next! 

We'd love a giant cardboard cutout of Sapheara.  All kids need a Super Hear-O.  Can anyone help us with this?

AB research in the news

Two new research studies about potential future Advanced Bionics technology.

Use of the Phantom Electrode strategy to improve bass frequency perception for music listening in cochlear implant users.

Integrated Speech Processor Headpiece with patent approval

 

 

 

Fourth grade and preschool bound!

Today is the start of fourth grade for Lily and another year of preschool for Bodie. Who would have ever imagined? Lily continues to achieve at very high levels and remains passionate about reading (and life!). She just finished the new Harry Potter script, after a summer of pouring through books.

Lily has her darling Kindergarten teacher again for the fourth grade. We are lucky she is such a strong teacher and will challenge Lily and help her grow.  

Unfortunately, our favorite principal retired this summer. This was a huge blow to the amazing school and culture she developed.  We are ever indebted to her leadership, advocacy and inclusion focus in a growing school. Hopefully we will cross paths again.  However, our new principal will be great too and has already shown great interest in "hearing issues" and providing strong support and inclusion.  

We are also lucky to be with other families and kids at the school who wear CIs.  We are able to support each other in our kids' hearing journeys.  I'm not sure where we'd be without them!   

Lily continues to wear her Neptunes, and we hope new AB BTEs will come out next year. Lily's been seeing some new advantages in BTEs like using headphones and some directional microphones. She continues to utilize a Phonak Inspiro in the classroom, in addition to a soundfield and Dyna-mics. And the best part is that all the technology worked on the first day of school!  Lily's hearing resource teacher gave a great training to the school's staff last week to prepare them for the technology and best teaching practices.

For new technology, we've got our eye on the new Phonak Inspiro touchscreen because of the Omni Directional Mic capabilities that can be utilized with small group discussions (and no mic wires) or a Phonak Pen (although not able to connect to other devices) or table Mics. Small group situations, especially in noise are very challenging for Lily. When there is one other student, they can wear the FM, but with many students, it's a real challenge.  

So much to think about and stay on top of this year but we're ready!  

 

Cochlear Implants before 12 months? Here's a new study showing benefits.

I have long believed that implanting kids before 12 months of age was an important and necessary approach for optimizing long-term speech outcomes.  Lily was implanted 7.8 years ago at the age of 10 months.  We would have done it earlier if the surgeon would have agreed.  

Eight years later, the age of 12 month is still used as a guideline for implantation.  

Here's a new study detailing the benefits of implanting kids before 12 months of age.  

 

 

Can an MRI determine success with a Cochlear Implant?

Interesting study determining a Functional MRI May Predict Children’s Language Skills Post-Cochlear Implant.  

Researchers at Cincinnati Children’s Hospital Medical Center found that elevated activity in two regions of the brain, evaluated with functional MRIs before implantation, may be biomarkers in children who do best with implants.  The study appears in Brain and Behavior.

Summary in ASHA Leader - http://leader.pubs.asha.org/article.aspx?articleid=2478939

Abstract of study - http://onlinelibrary.wiley.com/doi/10.1002/brb3.391/abstract

Cochlear Implants in Noise: SNR loss in children using the BKB-SIN

Lily just finished her semi-annual visit to the audiologist.  We arrived with what turned out to be a broken headpiece, and fortunately, were able to order a new one for delivery the next day.  The headpiece had been cutting in and out for the previous few days and created a number of difficult listening situations with just one side.  

With a loaner headpiece, Lily went into the booth for tests.  

In quiet, Lily does very well.  Tonight, Lily was asking if she hears as well as a "typically" hearing person.  When we said yes, pretty much, she was quite proud.  However, noise continues to be a challenge.  Especially when the noise is variable.  

At the audiologist, Lily took an interesting test - BKB-SIN.  The BKB-SIN is a speech-in-noise test that uses BKB (Bamford-Kowal-Bench) sentences, recorded in four-talker babble. The BKB-SIN can be used to estimate SNR loss in children.   Lily's results were as follows.  Essentially, it says for Lily to get 50% accuracy, the signal has to be at least +9db above the noise floor or +11.5 db more than a normally hearing person (in a bilateral hearing situation).  

BKB-SIN Right CI only   SNR for 50% correct:   SNR loss re: normal Left CI only   SNR for 50% correct:   SNR loss re: normal Bilateral CI’s   SNR for 50% correct:   SNR loss re: normal	+14.5 dB 17 dB   +9.5 dB 12 dB   +9 dB 11.5 dB

An individual with normal hearing sensitivity would be expected to score 50% correct at a signal to noise ratio of -2.5 dB.  The SNR loss is the difference between the signal to noise ratio at which Lily scored 50% correct and -2.5 dB.

Hearing First - Impressive new LSL resource

Hearing First is an impressive new resource that presents the various aspects of a Listening and Spoken Language (LSL) approach.  

http://www.hearingfirst.org

Through a variety of informational resources, families and professionals can use this site to learn about strategies used to improve outcomes when teaching children with hearing loss to talk and listen.  

Language-rich preschool for Bodie

Lily's brother Bodie has just started his second semester of preschool.  

We selected a language-rich preschool run by a woman who was trained as a hearing resource teacher and who continues to serve kids with hearing loss.  Of course Bodie knows all about the FM that the teacher wears.

We love the intentional teaching and targeted language incorporated into the lessons.  Teachers trained with a strong listening and spoken language (LSLS) focus for kids with hearing loss are able to extend those incredible skills to improve the language of all kids.  

Bodie already has an impressive vocabulary and doesn't stop talking. Takes after his sister!  Who would have ever predicted that!