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.
Of course Frozen had to be the theme at both her kid and family party. During the kid party, which was held at a local theater, Lily was able to live her dream of performing as Princess Elsa in a reinactment of "Let it Go." It was quite a show!
We're blessed to be surrounded by so many family and friends.
Lily and her "hearing enabled" colleagues are on the forefront of a generation of kids who are able to maximize technology to hear.
Because of this, we believe it's important to participate in hearing research whenever possible. We do it both to benefit Lily's future and the families that will walk in our path. Over Lily's lifetime we've done a half-dozen studies on language learning and listening.
This summer, Lily will add two more to her research resume. One study earlier this summer involved a research van coming to our home. Lily completed numerous listening and language tasks, in the van, to help the University of Iowa understand how kids with hearing loss are learning language, compared to their typically hearing peers.
The next study will be at Boystown in a few weeks which involves telelearning or telemedicine. Boystown is studying if providing speech and language services for children on-line is as effective as in person therapy. Here's an Interesting article describing Boystown's future hearing research focus.
We entered Phonak's recent #HearIam contest with cute photos of Lily and her Phonak Inspiro FM system. The prize is a new Phonak Roger Pen, which is a microphone cleverly disguised as a writing pen. Very cool!
Interesting new magazine called Hearing Our Way for children and teens with hearing loss. Subscribe on the website to get a free subscription mailed to you today.
Hearing Our Way is an educational magazine for children and teens with hearing loss designed with language, listening, self-advocacy, and cognitive skills in mind. Independent readers will enjoy the magazine on their own, though students of all ages and reading levels can benefit from using the magazine as a classroom reader guided by a teacher or parent. Articles and features are great discussion starters, and content can be easily implemented into current curriculum, IEP goals, and Common Core standards.
I just finished co-coaching a Destination Imagination group for Lily's school. Our club contained nine first through third graders and we met each week to focus on Science, Technology, Engineering, Math and Art themes.
Because this was the first year of the parent-led program, there was lot of experiementing and educating the adults, but overall it was a tremendous experience. We explored issues of water, verhicles and transportation, communities, insects and spiders, space and animals.
We discovered that these kids had limitless energy, imagination and creativity. Hopefully Destination Imagination is one tool that can help to nuture and encourage this type of thinking for many years to come.
The following are comments made on a sheet of paper brought home today called "One thing I like about Lily Bliss is..." Certain there were many examples provided for her entire class by her lovely first grade teacher, but it still may give us a little glimpse into the life of Lily.
Lily is funny, you are my friend, you are very kind, you are always listening (my favorite), you have very good hand writing, you are good at playing nicely, you are a good friend, you are very nice, you are very nice and funny, you are the smartest girl on the earth and you are so nice, funny and really smart, I like you, she helps me stay quite in the halls, you are helpful and kind, you are funny, you are nice, you are funny, you are funny, and you are nice.
Teacher added: funny, good friend, super speller, and learner.
We took a pretty awesome trip to Hawaii in March, to celebrate my parents' 50th wedding anniversary. I'm not sure why it took us so many years to get to Hawaii, of all the places we've traveled to in the world, but the experience was very memorable for all of us. Bodie asks daily if we can go back to the pirate ship pool, while Lily often recreates the luau in her grass skirt.
Exposure to a new culture and a variety of new words like Mahalo, Ohanu, Aloha and whale breaching were amazing, as were the beautiful sunsets and time with family. Not sure what we would have done without Lily's waterproof Neptune processors. We were in the pool, ocean or the rain everyday.
We're currently searching for a yellow hardy hibiscus, Hawaii's state flower, and now understand the theme of Trader Joe's much better. Need to find an excuse to get back to the other islands, or maybe just revisit Maui and Honolulu.
We took hundreds of pictures and are currently working to get the photos down to a manageable number. Just posting a few here to capture the Aloha spirit, to thank my parents for a wonderful trip and to preserve an amazing experience.
It's been a huge week. After two years of requests, Lily and the other kids with cochlear implants at her school, can now go down one metal slide without fear of damaging their electronic hearing equipment from electrostatic discharge. It's a dream come true. The slide is very fast and very popular with all the kids. Lily says the slide is a "madhouse." Building new vocabulary is just another advantage.
We celebrated the slide's accessibility, our donors and supporters with a ribbon breaking, speeches and cookies. The school's leadership has been so supportive. Many of the families were there to watch with amazement when the kids' hair didn't stand on end as they sailed down the slide. Having a metal slide makes it a little easier to breathe knowing our kids have one less barrier and risk to hearing.
I was proud to work with the other CI families to help to begin to make our school's playground accessible for all kids. This journey has moved the school's PTO to invest in "inclusive" playground equipment going forward. In fact, another new piece of equipment is going in this week. I was thrilled to hear that other parents thought that all kids, no matter the ability or disability, should be able to access the playground and not just be able to get on the rubber surrounding the playground.
While the two-year-old equipment was ADA accessible, it wasn't inclusive. With kids of varying abilities served in mainstream classrooms, it seems playgrounds are an area that needs to be given another look.
As a big TEDx fan, I found this talk by Dale Sindell of TEDXCibeles in Madrid fascinating. (TEDx speakers page)
Dale started losing her hearing at age 19. After graduating from college, she moved back to Spain, got married and soon lost the rest of her hearing. Somehow she continued to work in a variety of career roles and then had children, which resulted in her youngest child being diagnosed with hearing loss.
At that point Dale founded t-oigo.com, a non-profit virtual community which provides information in Spanish for people with hearing loss. Today 30,000 users follow her site each month. She's also an advocate for bilingual education - Spanish and English for kids with hearing loss. Such an inspiration.
LIly's second elementary science fair experience was a success. She studied Social Contagion, the idea that if we observe people who are tired, sad or bored, we become tired and start yawning. The same is true when we study people who are happy and laughing. We feel happy and start smiling with those we observe.
Of course it didn't take much encouragement for Lily to develop a video of herself acting out both roles.
Next year we hope to complete a cochlear implant or acoustics study, but this year we didn't find the right approach for a first grader. Backwards engineering or reprogramming her CI seemed a little daunting. Last year's project measured the noise in her school (there's a lot of it!!).
Let us know if you have any great ideas for a science fair project we could attempt.
Children with bilateral CIs achieved significantly better vocabulary outcomes, and 8-year-old children with bilateral CIs had significantly better language outcomes than did children with unilateral CIs....The outcomes were also significantly predicted by a number of factors related to parenting, child characteristics, and family background.
When Lily was implanted six years ago, the big debate was one or two implants. Our sense was that she had two ears, so she should have two implants right away. There was very little research about the benefits of two implants at the time. Many families were debating about "saving one ear for future technology." I don't hear that phrase today. Two implants seem like a standard practice.
A facinating new study found that when "they kept adult mice in complete darkness for one week, the animals’ ability to hear significantly improved. What’s more, when they examined the animals’ brains, the researchers detected changes in the connections among neurons in the part of the brain where sound is processed, the auditory cortex."
"At least in mice, it appears that the brain responds to sensory loss by swiftly reallocating connections among the remaining senses, perhaps providing the animals a better chance at survival. This could mean that someday people with hearing loss, or other sensory disorders, may be able to selectively rewire their brains."
Researchers found that "Premature babies benefit from being exposed to adult talk as early as possible." Preterm infants exposed to higher word counts at 32 and 36 weeks gestation have higher cognitive and language scores at seven and 18 months corrected age.
It makes wonder why families still have to fight for early implantation.
Reading is a great bonding time for these two, as is playing doctor. Bodie feels just fine, but he's doing a great job acting like the patient, even with his heart monitor taped to the couch. Lily is certain she wants to be a pediatrician so she must practice any chance she gets. I'm still searching for a stethescope that she can plug into her CIs and actually hear a heart beat.
Chickens have the amazing ability to restore their own hearing, and this trait inspired the Hearing Health Foundation to seek a cure for hearing loss in humans. I knew there was a reason we got chickens!