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.
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!
Interesting research summary on the Safety and Functional Results of Early Cochlear Implant Switch-On in Children. That means instead of waiting for four weeks before they switched the implant on, they only waited for one week. Even five years ago, Lily's implant center only waited 10 days.
"This is the first study investigating the safety and the effects of an early cochlear implant switch-on in children. Results show that such a procedure is well tolerated by pediatric subjects and free from complications. Impedance measurements suggest that the earlier switched-on subjects benefit of lower and more stable impedances than subjects undergoing 1-month switch-on."
Researchers have developed a new, low-power signal-processing chip, which sits in the middle ear, that could lead to a cochlear implant with no external hardware. The implant would be wirelessly recharged and would run for about eight hours on each charge.
The night before Lily's implantation we watched a marketing video from Advanced Bionics about a little girl named Cecilia who received a cochlear implant around the age of two. She was independent, confident, talking, seemed really smart and had great parents. We loved her and always wondered what happened to Cecilia? This was a little girl who helped us believe Lily's CIs were going to work.
I had an update a few years ago from Mary Koch, her therapist in the video, and then tonight I stumbled upon this jewel. An update video. Today Cecilia is at the top of her class and an accomplished athlete. She's getting ready for college. Celilia said she couldn't imagine a life without sound. What a great way to end the day.
Check out the Alfred Mann Foundation (http://aemf.org/) and scroll to the bottom of the first page for the video.
Reading the morning paper, I saw a story about Lily's elementary school and a new local food program. Half way through the article I read, "First-grader Lily sat in the elementary lunchroom, bit into the day's barbecue-coated lesson and summed up her experience with a single word: Delicious." The reporter was directed to Lily because the Vice Principal knew Lily would have something positive to say. HA!
Lily now thinks she is famous and wonders when Bodie will be the newspaper. Just another amazing day!
We took our annual trip to the Stars hockey game and Lily always insists on making some kind of flag or cheering tool so she "can get on television." This year was no exception. We're not sure the hockey games are actually televised by anyone but the local sports news, but we don't want to dampen her enthusiasm.
Lily asked all the way to the rink, why we didn't see any flags on other people's cars. Apparently the Stars junior division hockey doesn't get as much attention as the Husker Football games in our town.
Being Lily's brother/shadow has its good times and bad. Mostly good. We already have Bodie swimming and he has taken to it incredibly quick. No fear, just floating on his back. Lily stands ready during the lesson to assist with high fives and waving under the water.
Last week, I also found Bodie perched next to Lily eating an after school snack and devouring a book. I think Bodie already has that love of reading like Lily does. While Lily doesn't read 10 books a day anymore, we try to encourage her to read at least one book or an hour of reading each day to build her language skills. When not nestled up to Lily, Bodie's favorite spot to read is on Grandpa's lap. They cover such favorites as The Fire Truck book, Tiny Hands and Max and Ruby.
After being invited to a Harry Potter birthday party, we figured that Lily/we needed to get up to speed on all the lingo, names, potions and culture surrounding the book series.
Since that time, Lily has read the first Harry Potter book and watched the movie. There are so many details, stories and characters to remember. I can't keep them all straight. After the party, Lily came home and turned our foyer into Diagon Alley, a street where Wizards buy their tools. Note the hat, cape, wands, owls, potion books, etc. Such imagination and a switch from the "Lily's Rainbow Spa" which is a permanent fixture in our bathroom.
Facinating article on new research that has investigated the possibility of using gene therapy to prevent the death of nerve cells in the inner ear in people with certain types of progressive hearing loss.
Love the innovation of the family who created CIWear, an active wear shirt with pockets for cochlear implants and other electronic devices.
Where to put the Neptune processors is a challenge that adults and children face. Especially in the pool, ocean or even during a basketball game, CI users want the processors to be secure and the cords to stay close.
While swimming in a pool, we clip Lily's CIs on her sleeve then run the cords up through her shirt. This new active shirt design looks even more secure. Now if it only came in pink!