When a Zombie Walk was held in our town, Lily knew she had to be a part. Such a fun day for the kids to act like zombies and of course tons of new language opportunities.
There are no real rules or expectations for what zombies do. Just look creepy and dead! Ha!
Lily has long wanted to be an otolaryngologist, teacher, pediatrician, Cochlear Implant designer, Mom and a million other professions, when she grows up.
However, a new profession, Forensic Scientist, has now entered the mix. Although Lily has no interest in blood and guts, this new career is closely related to her love of spies and mysteries.
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.
My New Year's Resolution is to get back to blogging. It's important!
However, nearly all the blogs I have followed for the past 7 1/2 years are either slowing or have died long ago. I miss knowing these kiddos lives from afar! Certainly Facebook and Instagram have taken their place as a way to share a story. In addition, the kids have gotten older and there becomes less day to day discussion of the hearing journey. But I hadn't realized how important continuing to tell our story would be, until Lily recently found her blog books.
Every few years we've printed out the blog, using Blurb as a book publishing tool. The books have always sat under the coffee table ready to read. However during this winter break, Lily has found and devoured them, reading and re-reading each page as if it was the secret to her life's story. I always wrote with this end in mind, but didn't imagine it would happen when Lily was in the second grade.
Here's to another year of blogging and total bliss (when you meet Princess Elsa for the first time)!
Lily had a number of new sport experiences this summer including softball and horseback riding.
In softball, Lily liked hitting the best and was very good at it, but thought fielding was a bit boring. She likes action. It was fun to see her progression through the summer. Fortunately her primary coach was the husband of her first-grade teacher, so I'm sure he'd already received lots of lessons in hearing. :)
We watched carefully how hearing impacted the game. Certainly Lily had to watch and listen to the coaches more carefully, and I'm not sure if she could always tell where the ball was hit or caught based on the sound of the bat or ball hitting the gloves. Such small sounds in such large spaces. We didn't use the FM for softball, but if this was the pros, we'd definitely consider it.
Horseback riding was a a wonderful experience as well. Lily was ready to be "unleashed" on day two, although the teachers had other ideas. The riding was slow and gentle, with lots of confidence building time. While the farm was fairly quiet, it was challenging for me to educate the young teachers on the fly.
On the last day, one of the Moms of the other students came over to me and said I see Lily has Cochlear Implants. Instantly I wondered what her connection with the "hearing" world was. She pulled her hair back and said, "I have one too. I was implanted after college and have had it about 15 years." While I was amazed, Lily thought it was only mildly interesting. Having CIs doesn't seem that unusual to her.
Lily commonly reads upside down. She and the book are totally flipped over while her legs wave around in in the air. Not sure what it means or if there is any research around something like brain stimulation when reading. Maybe this could be Aunt Kelly's new reading research focus???
Lily continues to devour books and grow in her literacy skills. We check out bags of books, instead of just a few, because they don't last very long.
With all this time spent upside down and flipping around, Lily is now enrolled in gymnastics. We briefed her teachers on tips for communicating, but parents sit behind a glass window in one corner of the gym, so I'm not sure how much she is actually hearing or missing. The gym is a very challenging listening environment. However, even with the difficulties hearing, Lily is loving the experience.
Her Neptunes make a little bump under her leotard, but don't seem to give her much inconvenience. The headpieces stay on well in their ponytail setup, even when she's spinning around and around and around. No limitations for this kid!
Second grade seems to be going well. We had a "pre-meeting" the day before school started with all the second grade teachers and new staff at the school. This was in addition to the regular IEP team transition meeting which also had new faces like a new SLP and Assistant Principal. It reminded me of the critical need of training and re-training teachers to maximize the educational experience for our kids.
The new SLP, who was just out of graduate school, told me that she's already met Lily. Then she adds that as a student she attended our local parent group meeting Amplify, where we have SLP students "babysit" and she was able to meet kids with CIs. Feels like a small success that this may have been her exposure to kids with CIs.
Awesome new book for beginning readers called Ninja, Ninja, Never Stop.
It's about the relationship between two brothers playing/tormenting each other, until the end of the book in which they form a powerful Ninja bond.
It's a must read for kids 2-5 years old who like fun, action and sweet illustrations.
While this book has nothing to do with hearing, it was written by my talented and world traveler friend Todd Tuell. We're donating a copy to Lily's school library in Todd's honor!
Lily celebrated her seventh birthday in June.
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.
We've got lilies planted all around the house. Here are some hardy Canadian lilies that grow five to six feet tall. Ahhhhhh summer.
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 audiology services for children on-line is as effective as in person mapping. 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!
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.
Lily and Bodie experienced their first Husker Red/White spring game. Feels a little like Where's Waldo. Can you find them on the field?
While the sound system in the stadium was really loud, it often times wasn't that clear. Announcements, calls and music should have been captioned for those who are deaf or hard of hearing.
Some sports stadiums are moving to IPads where people can follow the captioned action, but I hope that progressive stadiums will figure out Jumbrotron captioning before they are legally required to.
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.
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.
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.
With a no candy requirement, Lily created wonderful "U Rock" valentines for her classmates. Each rock was custom painted. Such a fun way to celebrate Valentines day.
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!
Check out this interesting article on the research and the Hearing Health Foundation's chicken video. Curing hearing loss in 10 years? Maybe?
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.
Over the holiday break we've hit a few of Lincoln's newest Little Free Libraries, a library craze happening all over the country. Their theme is "Take a book, leave a book."
It was quite an adventure finding the libraries, discovering what was inside and then convincing Lily it was alright to take a book at each stop. She had them all read by the next day so we'll have to make another journey to return a few books in their place.
By January 2014, thre are supposed to be 10,000 Little Free Libraries all over the country.
A few of our favorite photos from San Francisco.
The first is the tinyest public parklet in San Francisco which was about the size of two parking spots and built with slanted seating. It was in front of a restaurant called Farm : Table, which we assumed was food from the farm to the table. Nope. It was a tiny room with one tiny farmtable. We sat outside. When brining our food out, the owner said, you must not be from around here. We said, yeah Nebraska. She said she was from Minnesota.
This trampoline is one of our favorite spots on Fisherman's Warf. Lily celebrated her fourth hearing birthday here with a jump and now got to repeat the fun.
Grandma is always trying to build language and experiences for Lily. She sent along a room service fund for Lily to choose something grand and have it delievered. This Ben and Jerry's on a silver tray with two large waters was the perfect end to a great trip.
Finally, Lily found the North Pole and wrote a few letters to Santa. They all included a request for a surprise gift.
Lily's highlight in San Francisco was a trip to the Children's Creativity Museum. It's a small children's museum, which has incorporated technology into nearly every exhibit.
Lily loved the animation focus. Not only did we complete a clay animation video, but Lily was also trained by world-famous sand animator Gerald Conn who was in San Francisco for an Innovators residency.
Lily's segment is the purple and yellow jellyfish moving through the center of the screen.
Outside there is a park with the greatest metal slides known to man. Lily was in heaven as she sailed down the slides with no fear of electrostatic discharge destroying her cochlear implant hardware or software. Wish every playground could include options for kids with CIs. Total joy!
We journeyed to San Francisco for a quick trip in December. While we've been to San Francisco a number of times before, we had never been to the Exploritorium. It's been open for 50 years, but just recently reopened on Pier 15. WOW!
I thought it was the best museum that we'd ever been to. That includes children's museums, science museums, and Smithsonian's all over the world. The creators captured the balance perfectly between engagement and education, art and science. There was even a large exhibit on Harold Edgerton, a Nebraska native who invented the strobe light. Years and years of school science fair experiments in front of us. We finished the day by riding a cable car ride which Lily insisted we try.
