Microtia...what's microtia??

Micro....what?  Microtia. (pronounced micro-sha).  So here's your public service announcement regarding a bit more information on microtia. I would like to share on a very basic level what microtia/atresia is and how it can be treated.  If nothing else, I love to learn new things.  Maybe you do too.

Microtia is a congenital occurrence where the external ear is underdeveloped.  The outer ear may be small, malformed, or absent. The name comes from the Latin words meaning little ear. This condition can be unilateral (one side only) or bilateral (affecting both sides).  The exact cause for microtia is unknown, though the CDC recently cited maternal diabetes and mother's diet likely risk factors for microtia. (http://www.cdc.gov/ncbddd/birthdefects/anotia-microtia.html)  Approximately one in every 9,000 children is born with microtia.    Microtia is often accompanied by atresia or the absence/closure of the external auditory ear canal (atresia is Latin for absence of an opening).  A child with microtia encounters hearing impairment due to the loss of outer ear structures.  

For a child with microtia, establishing optimal hearing is of utmost priority.  This can usually be accomplished with a bone assisted hearing device.  This type of hearing aide vibrates the skull, sending vibrations to the bones surrounding the cochlea, where hearing signal is received and sent to the brain. Essentially bypassing the ear canal and getting sound inside one's head.  Initially this hearing device may be worn with a soft band around the child's head until appropriate skull growth has occurred. 

Once the child is big enough, titanium rods or abutments are placed into the child's skull, where the hearing device can be attached.  If a child has microtia bilaterallly, then two hearing devices, one on each side, are recommended for the best surround sound hearing.  

Once hearing is established, it is recommended that a family take their time to explore ear reconstructive options.  There are four major options available, with new progress being made daily!  Options include 1. Rib graft-taking a child's own rib cartilage to create their new ear structure 2. Medpor ear implant with a skin flap placed over new ear 3. Ear prosthesis that can be removed as needed 4. No corrective surgery.  Each of these options come with their own pros and cons, making the decision process challenging.  Add in the social stress that can accompany microtia, and it is hard for parents to know what is best for their child.  

Because of these challenges, it is important for those with microtia to realize there is a community of support, information, early intervention, and awareness available to children, adults, and family members.  EAR COMMUNITY was created to provide awareness and information for those encountering microtia/atresia in their own life or one of a family member. Earcommunity.org is available worldwide and provides information on hearing devices, surgery, emotional support, and daily living with microtia.  

It is with great excitement that Ear Community announces NOVEMBER 9th to be the first annual National Microtia Awareness Day!!!  This day will be used to provide awareness on microtia and education on resources available.  We want to encourage any who are interested to support this FIRST annual day by purchasing a microtia awarenss t-shirt and wear it on November 9th.  The Hurleys will be taking pictures in our blue ribbon shirts and posting them on social media using #MicrotiaAwarenessDay #EarCommunity.  The deadline for ordering tshirts in time is November 1st so get your official tshirt HERE!   All tshirt proceeds will go to support children and adults with microtia and atresia.  (As a side note, most hearing assistive devices are not covered by insurance so your money will likely help others HEAR!)

So there you have it......a big announcement and a bit more information on microtia.  You can read the official press release HERE.  Thank you for your support!

Grateful: Day 3 with Oticon

When I had first reviewed our itinerary for our weekend with Oticon, I noted that Sunday morning had three hours marked for brunch, including time to "mingle with your new friends" (said the program).  I remember thinking, "Wow!  What will we do that entire time?!?"  Its funny now.  Our final morning in New Jersey had us up and packed and feeling a bit sad to not have more time with our new friends.  There was still so much I wanted to ask, wanted to learn.

We met at the Oticon dining room for brunch and visited for a bit.  After eating, the kids quickly joined in play together.  For a short period, we could not find Brody......only to discover him "camping" under the table with his friends.

After some free time, Oticon provided stations where we could talk to the staff about products, insurance assistance, and social media.  I had so many questions.....I never made it to all the stations! Each of the staff members were so kind and patient with us, answering each of my questions and helping in my desire to know more about pontos, surgery, and maximal hearing for Brody.  They provided each ponto wearer with very generous gifts.  Brody was excited to receive blue hearing aids like his friend (actually skins to cover his current pontos).  It was during this time that all of my emotions caught up with me.  Travis and I were discussing a hearing product with one of the audiologists and I could feel the tears coming.  I blinked lots and worked hard to suppress them but I could not stop thinking about all Oticon had done for us.  Then it happened.  Brody ran up to me and said, "Momma, look!!! Hearing aides!" and the tears came.  Oticon gave him a stuffed monkey who also wears a ponto hearing device behind one ear.  I could not believe it.  There was nothing they had not thought of......(well, except tissues.  I really needed tissues at this point. :)

Our time together ended with a few awards for the group's star creators, connectors, and socializers.  I was slightly paying attention when I noticed Brody's picture was on the screen.  Our little guy was honored with the Star Socializer.  The thought of it still makes me smile.

As parents, we were worried about Brody enduring the weekend with so many new experiences and people but instead he shined!  He made friends, he chatted with them, he played with them, he learned from them.  For all our days together, we as Brody's family have helped him communicate by interpreting his signs and now his speech.  This weekend, Brody communicated and made friends all on his own.  It was a beautiful and exciting thing to watch.  

So as we said our goodbyes, shed a few tears, and hugged our new friends, our hearts were so very full.  Full of the reminder that goodness still exists.  Full of family time, new memories, and treasured new friends.  Full of empowerment to research, speak out, and share.  Full of hope for the future.  Full of gratitude.  

Thanks Lord for making it all possible.  We thank you for our friends at Oticon and pray your blessing on them as they continue a good work.  Thank you.

Because sound matters: Day 2 with Oticon

It was day 2 on our Oticon adventure and we awoke anxious for all that the day had in store!  Our schedule was busy!  Conference from nine to five at the Oticon offices, followed by dinner and entertainment in New York City.  Prior to our trip, we had been a bit anxious about how Brody would do in so many new situations.  Though he does have a friendly personality, Brody still tends to cling and stop communicating when he is uncomfortable.  (Side note: Just the week before, Brody chose not to participate in his speech session with his teacher of two years because she had a student observing their session.  He remained uninvolved most all of the session.)  I mention all of this to say these concerns now seem silly.  Brody was friendly, excited, and outgoing from the beginning of our trip and did not waver despite the many new situations and people he encountered.  These were his friends! (That's what he kept telling us!)  So while Travis and I prepared for a day of learning, Brody headed to "camp", a day filled with crafting, games, and play in a room near to us at Oticon's offices.

I took eight pages of notes during the day and while I am sure you do not want to read the nitty gritty details, I must cover the highlights!

Our morning started with Alan Raffauf (Vice President, Marketing of Oticon Medical US) who reviewed the basics on bone anchored hearing systems, new products (Ponto 3 SuperPower!), and challenges Oticon wants to address.  We learned that ponto (the name of Brody's bone anchored hearing device) is Latin for bridge.  That is so neat!  In bone anchored hearing, sound stimulates the device which vibrates the bone around the cochlea, sending the hearing signal to the brain.  All while bypassing the ear and ear canal!  We heard from Tory Burns, an audiologist with Oticon and fellow ponto user.  He shared with us his personal experience as well as the new very much improved MIPS surgery for the placement of Brody's abutment (titanium post placed in skull that ponto attaches to).  This surgery is specific to Oticon devices allowing minimal scars, no sutures, shorter healing times, and less complications than the previous techniques for placing the abutments.  We learned about the immense community of support and advocacy thru Melissa Tumblin, mother to Ally, also a ponto user.  Melissa is the founder of earcommunity.org,  a website loaded with information and resources related to microtia and atresia.  They assist with educating, creating awareness, providing picnics where families can gather, helping those in need receive a donated device, scholarships, and so much more!  Melissa also made a huge announcement related to advocacy for microtia.....stay tuned because I will be writing a specific post on this.  Next we heard from Angela and Sarah Sabal.  Sarah is a sixteen year old beautiful young lady with bilateral microtia, ear reconstruction, and ponto user.  I cannot tell her story because it is hers to tell but I will say that she left this Momma feeling oh so hopeful for Brody's future.  She was a picture of grace, courage, and perseverance.  Her mother, Angela, directs several facebook groups related to microtia inlcuding a kids' club.  Camilla Gilbert is a beautiful young woman who shared her lifetime journey to hearing.  She shared the struggles and the triumphs.  I mention each of these by name because they were so special to us.  Up until this point, we had little contact with people who were walking a similar road as Brody's....the journey to hear and all that entails.  By the end of the morning, I felt overwhelmed by the support and resources available but also felt almost neglectful that I had not reached out to these sooner.  I was really beating myself up.  As I've had a bit of time to reflect, I think we were so busy upon Brody's arrival home with adjusting, providing for our children's needs, and visiting so many medical appointments, it all just seemed too much.  Thankfully we met each of these new friends at just the right time and before any major decisions for Brody's health have been made.  God's timing is perfect.  

Believe it or not....that was just our morning!  It was time for lunch and when we were reunited with Brody, it appeared he was doing just fine.  Actually, he was great!  He informed us he was eating at the kids' table.

If you are still reading....well, bless you! Here's where it gets good. :) At this point in the day we were not only overwhelmed with information but with the genuine goodness of the Oticon staff. Oticon's founding principle is "People first."  They do not just speak this but live it.  Many of the staff traveled across the country (or around the world!....two from Denmark!) to be with us for the weekend.  They took time away from their families, gave up their weekend off and instead listened to us.  I have worked in healthcare for almost twenty years and this is the best example of making the client priority that I have EVER witnessed.  The staff traveled with us, ate meals with us, taught us, listened to our stories, laughed and cried with us, and genuinely cared!  In all honesty, we did not pick Oticon when choosing Brody's bone assisted hearing device.  Instead that is what was provided to us, the only option that was paid for by our services.  BUT OH MY how that was God providing again when we did not even realize it!!!  What a blessing that we received Oticon products for Brody.  Not only did God provide him the best hearing for now but the most amazing staff to support and encourage us!  We continue to stand amazed at God's provision in our lives.

Our afternoon was filled with information related to insurance/reimbursement, methods of advocating, and brainstorming.  The ponto users and families shared takeaways from the day, suggestions for Oticon, and ideas for the future.  No big deal, right?  Here's the difference, Oticon staff listened.  We spoke, shared, and wrote down our ideas.  I heard the Vice President say, "If two people write it down, we really need to consider it."  Wow.  So many could model themselves after Oticon's customer service!  Our conference day ended with workshops and I played on Canva to create an image that promotes Brody's product.  It helps that he has a great smile. 

Well our day was not over yet!  Together we traveled into the city where we boarded the Spirit of New Jersey for a dinner cruise on the Hudson River.  We enjoyed beautiful views of the New York city skyline, including the Freedom Tower, Empire State Building, Brooklyn Bridge, and Statue of Liberty.  What a treat!!!

After enjoying the beautiful sights, our day ended with dessert and a dance party inside the boat. Brody took the lead when he grabbed Ally for a slow dance.  He even kissed her hand when the dance was over! Then the music picked up and so did the dance moves!  

The kids, big and small,  had a great time taking over the dance floor.  And yes, we were definitely surprised by Brody's dance moves!  It was a fantastic ending to a jam-packed, overwhelmingly good day.  

Thank you, Oticon.  Sound does matter.  Our son is proof of that. 

Goodness still exists: an Oticon adventure day 1

Generosity. Caring. Selflessness. Pursuit of excellence.  Customer first.  These principles are not extinct.  I know because I witnessed them and so much more at our recent weekend to Oticon's 2016 Patient Advocate Workshop: The Next Wave.  That title is a lot of words that hardly describes what we experienced.  I want to shout from the hilltops my gratitude....but instead let's just start at the beginning.

This past July, I received an email from an unknown person inviting my husband, youngest child, and I to New Jersey (all expenses paid!).  When I read the email, I immediately thought, "This is too good to be true."  I shared it with my husband, he replied the very same words and so we dismissed it.  Within a week, I received another email with the same invitation and asking for our reply.  I put it to the side for several days and finally decided to give a call to find out more.  What I discovered is that Oticon hosts an annual conference for ponto users(bone assisted hearing device that Brody wears).  Those invited would consist of children and adults.  It would be an opportunity for us to learn, share, and know others with similar situations/challenges.  We discussed it and of course agreed!

Fast forward 3 months to the week of the conference.  We had thought little about it and once receiving the itinerary for the weekend, we knew we were in for a treat!  My excitement was starting to build.  Travis not so much.  He still felt uncertain and when a limo arrived at the airport in Newark, Travis wondered if we should really get inside.  (Brody did not think twice!)

We enjoyed our hour drive from Newark to our hotel, stretched out in the limo.  Travis might have played with the interior lights and gadgets. :)

Feeling tired, we checked into our hotel and made our way to the room.  As we did, we noticed others in the lobby wearing the ponto hearing device.  Hmmmm......"people like our Brody" we thought, and our interest had been sparked.  We freshened up and returned to the lobby for our name tags and instructions from Oticon staff.  While waiting in line, our Brody began tugging on my sleeve and pointing to another little Asian boy.  As I noticed him for the first time, I saw he was doing the same thing to his Momma.  I took Brody to this handsome boy with a beautiful smile and we had introductions.  There was an immediate bond.  These two boys have so much in common.  By the looks on their faces, they must have felt the instant connection also.  

Travis, Brody and I made our way across the street to the delicious Maggiano's Little Italy restaurant. Brody was already drawing attention in his favorite light up shoes. 

At Maggiano's we began to mingle amongst other ponto users and the Oticon staff. There were so many staff members present, smiling, greeting us, interested in our Brody.  Immediately, you could feel the genuine caring.  Confession here, I had never before considered the people behind the brand Oticon that our son wore daily.  Suddenly we were face to face with THESE people and boy did they care! Our Friday evening was filled with excitement.  We ate delicious Italian food, met so many fantastic people, and each ponto user shared their personal story to hearing.  We heard stories from adults with sudden onset deafness, young adults who had worn many hearing devices, successful college students creating awareness for hearing impairments/microtia, teenagers dealing with being different, and children born hearing impaired.  And for those curious, some ponto wearers have two ears, some have one "normal" ear, and some have no "normal" ears.  The theme was clear: Oticon pontos had allowed hearing in each person's life and therefore improved learning, development, play, careers, school endeavors, and relationships. Adults and children were not just hearing but hearing well!!!

Sharing a tiny bit of Brody's story...he even said, "Hello!"

Brody became instant friends with Ms Lindzee, Oticon rep & audiologist.

So many beautiful, touching, life-changing stories!  It was inspiring!.....and the weekend was just beginning.  Despite our fatigue, we already felt encouraged and looked forward to a fantastic weekend with this diverse yet united group.  We went to bed with our bellies full, our hearts warmed, and our minds anticipating knowledge not yet known. 

To be continued.........