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.
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.
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.
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 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.
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.
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?
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!
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.
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
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).
Right CI only
SNR for 50% correct:
SNR loss re: normal
Left CI only
SNR for 50% correct:
SNR loss re: normal
SNR for 50% correct:
SNR loss re: normal
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 is an impressive new resource that presents the various aspects of a Listening and Spoken Language (LSL) approach.
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.
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!
Always interesting to follow the latest research on the study of animal cell growth and how certain animals have regenerative abilities in regards to their hearing and hair cell regeneration.
According to this article, Zebrafish may be the key to understanding and replicating how to regenerate hair cells. It's just may be what Lily will use some day, to regrow those hair cells in her cochleas.
Lily's just finished her second week of third grade. It's hard to believe. When she was born the days were so long. Now the days fly by and Lily is growing into a "pre-teen." She's continues to be at the top of her class and gets to sit next to her best friend. Lily loves reading and she pours through books as fast as we can check them out. She is still doing gymnastics and will be starting Girl Scouts and Destination Imagination soon.
Here's Lily's new big IEP goal that covers many topics.
Goal: During discussion of challenging listening or social situations, Lily will use problem solving steps to increase her independence from a baseline of 6 points to 15 points out of 16 point rubric on self-advocacy rubric.
This year, Lily has a new hearing resource teacher who I think will be great. Lots of energy, passion and high expectations for kids with hearing loss. She will check in with Lily for 20 mins a week (3x per month), either in or out of the classroom.
Lily's new third grade teacher seems terrific. She's expressed her openness to learn/collaborate about hearing and said Lily has been helping her remember the FM and captions. She is also pregnant, so hopefully will put all the supports in place with a substitute when she's gone. All great things. Both teachers have indicated things are going well.
Lily continues to wear an FM and her school classrooms all use sound fields. We are also experimenting with a Dynamic, connected to the sound field, inside the classroom and the lunchroom.
Other issues we identified on the IEP that continue to be a focus:
Helping new teachers know how to use equipment
Helping subs use the equipment
Effective small group experiences - use equipment, staying on topic, one person talking at a time, clarification strategies
Strategies in noisy listening environmnets
Giving feedback that equipment is being used correctly and consistently
Social engagement strategies with peers (reading others feedback, greetings, developing best friends)
Understand how her hearing loss may impact her in a variety of social situations
Understands characteristics to make or keep friends
Respects physical space/boundaries of others specifically when trying to hear better.
Another area we have started to focus on is CC or closed captions. When dealing with videos or TV, captions help significantly in understanding the content and have helped Lily to become a super reader. Captions move fast and so your reading practice and speed have to match. They fill in all those words you didn't even know you missed.
This week when Lily's teacher turned on a Kahn Academy video in the classroom, the captions were in Czech. Eventually we figured out how to translate them back into English.
It's all such amazing technology. We just have to stay on top of the various components to make sure they are working seamlessly.
Success for Kids with Hearing Loss - Karen Anderson has a fresh approach and highlights many interesting tools and resources. As Lily gets older, I'm interested in learning more about Interact-AS a school speech-to-text captioning device.
A few months ago, Lily got to live out one of her bucket list dreams of being a flower girl for our friends' wedding. It was a beautiful night with an equally fantastic flower girl dress to match. Lily stayed on her best behavior, walked down the aisle on cue and danced the night away.
The only challenge came when trying to communicate in a big converted warehouse that had been transformed into a wedding reception environment.
Lily occasionally looks to me as her "oral translator" in noise and unless we explain or point out Lily's hearing loss, it often goes unnoticed. However this night, one of the guests asked why I was repeating everything they said...weren't they speaking English? I had Lily explain that she uses CIs to hear and that noise was often challenging. It was a great learning moment.
We recently went for Lily's six-month CI tune up with her audiologist. The two hour appointment goes quickly, however this time we were able to do some speech perception testing and examine what happens to Lily's listening abilities when she uses the FM system.
HINT Sentences in quiet: 97%
HINT Sentences in noise (+5 dB signal-to-noise ratio): 71%
HINT sentence materials are at about a 1st or 2nd grade reading level, so one might compare her performance on this test to listening to material that is routine or familiar. A signal-to-noise ratio of +5 dB is not especially uncommon in a typical classroom and noise levels can often be even higher than this.
AZ Bio Sentences in quiet: 84%
AZ Bio Sentences in noise (+5 dB signal-to-noise ratio): 42%
AZ Bio Sentences in noise (+5 dB signal-to-noise ratio) with FM in use: 91%
AZ Bio sentence materials are at about a 6th grade reading level according to some lectures. It would be appropriate to use Lily’s performance on this as analogous to listening to material that is unfamiliar or that is new information/vocabulary.
We continue to search for better technology to help Lily hear in noise, especially when it is in a multi-talker environment like the lunchroom or during small group discussion.