Tag Archives: softband

Lifting up Luca with the Ponto Plus Power

We all want our hopes and dreams to come to fruition, but what happens when they come to fruition before you’re ready? For Anne and Robert Brooks, their hope and dream was to give birth to a baby boy. This aspiration did come true, but too soon—their son, Luca, was born prematurely at 34 weeks.

As a result of the early delivery, Luca was born with, as well as diagnosed post-birth with Branchio-oto-renal syndrome. Anne and Robert with met with an Audiologist and ENT to learn more about Luca’s condition and potential solutions. After learning about all of the hearing solution options, they set out on a long and tiresome quest over the course of a year that consisted of carefully written emails, letters, and marathon phone calls with their insurance provider. Ultimately, this proved to be a fruitless effort, as they were denied coverage.

During this time, they came across Ear Community and learned met many other families who shared their stories and advice.

Continue reading

Children with Microtia/Atresia Receive Pontos During Humanitarian Trip with Peak ENT & Utah State University

Recently, Oticon Medical donated four Ponto Pro and Ponto Pro Power devices on a softband to a hearing humanitarian trip with Peak ENT and Utah State University. There’s nothing that could make our day more than hearing the stories of those who received the Bone Anchored Hearing Systems. We thought we’d share and hopefully bring some joy to your day too.

Joseph Dansie, AuD CCC-A/F-AAA, Peak ENT Associates-Audiologist, went on the mission to Central America to deliver and help fit the softbands. Below, Dr. Dansie recounts his experience with each child.

“I want to say thank you to Oticon Medical for their generous donations of the four softband Ponto Pro and Ponto Pro Power devices,” said Dr. Dansie. “We were able to fit all of the kids with bilateral Microtia/Atresia.”

Meet David

This slideshow requires JavaScript.

Continue reading

Baby Boy’s Family is Thankful for the Gift of Hearing

Ponto Wearer Kris Siwek Gives— and Gets— the Ultimate Gift

Kris Siwek is a Ponto wearer and advocate that we know well. Kris suddenly lost her hearing after being diagnosed with a tumor at age 29. Kris, pregnant at the time, did intense research to find the best solution for her survival and recovery— from her acoustic neuroma removal to finding the right hearing solution. Kris actively shares her story and advocates for those with acoustic neuromas and hearing loss.

When we spoke with Kris last week, we could see her face light up when she mentioned her donated Ponto would go to a 7-month-old through Ear Community. Heres’ more about that 7-month-old, Clark. As Kris put it, “It’s just so perfect.”

“In April of 2014, Max and Melissa Witt gave birth to a beautiful sweet baby boy named Clark. When Clark was born, he was originally diagnosed with having Goldenhar Syndrome and Hemifacial Microsomia. Clark was also born without his left ear due to having Microtia and a missing ear canal due to having Atresia, resulting in hearing loss,” Melissa Tumblin, Founder of Ear Community writes in the original piece about the story on Ear Community. “Clark’s parents did everything they could to provide him with proper healthcare prenatally. They had level 2 ultrasounds, genetic screenings, even a fetal echocardiogram… However, it wasn’t until Clark was almost 2.5 months old (after birth) when Clark’s doctors discovered that his heart had a double aortic arch. Clark underwent heart surgery at just 5 months of age to fix his heart.”
Clark After Surgery Continue reading

Angela Holley: Our Journey & How We Finally Got Insurance for Evan’s Ponto

Angela Holley wanted a sustainable hearing solution for her six-year-old son, Evan. Even when it meant calling insurance companies daily, Angela was Evan’s unwavering advocate. Now, Evan has what he needs and is a happier child who hears better than ever.

Here’s Angela Holley’s story–

Evan, who has bilateral hearing loss, started out wearing Cochlear hearing devices. We had a lot of issues and were constantly sending them in for repair. When we finally received the devices back from repair, our Audiologist was unable to program them. The Windows computer system wasn’t compatible with the device program, which caused yet another huge delay for us, and more importantly, for Evan. We were frustrated, and the Audiologist was frustrated.

During this time, our aggravation encouraged us to try demos of the Oticon Medical Ponto. We were excited by Evan’s response and couldn’t wait to get him a pair of his own. So, we sent in the order to the insurance company. To our surprise, it was denied. Because Evan had additional hearing loss from his last screening, we were truly in shock that his case was denied. So began the journey to getting coverage for devices that worked well for Evan…

What I Did to Make the Case

First, I appealed with a letter saying that the devices are not a want but a need. That they contribute greatly to him functioning as a successful individual. He needs the devices to be successful in school and to thrive with his peers. Then, I search for helpful information and made sure I knew about everything that could be helpful. Ear Community and Melissa Tumblin were an excellent resource. Finally, I collected any kind of documentation I could get to help build a case for Evan. Gather and submit documentation such as:

  • Letters from Evan’s teachers
  • Information from Evan’s ENT and speech therapist
  • Hearing Screen Results
  • Information from Evan’s pediatrician
  • Even a letter from myself explaining our own experiences in communicating with Evan—we were having to repeat ourselves more than ever

Evan HolleyI didn’t rely on others to help get the job done, and I suggest the same to other parents. Make sure that you are organized and submit every piece of paperwork in a timely manner—there are deadlines that will affect the outcome. Work with the Audiology clinic that’s pushing through the paperwork, and make sure they’re meeting deadlines. Finally, follow up and then follow up again. Make sure information was received. It is a lot of work, but it can be done. Don’t just accept the denial and don’t rely on other people to do their part.

And hopefully, as with our case, you’ll see the light at the end of the tunnel. Finally, the insurance company approved coverage for one Ponto. Even though Evan needs bilateral aids, we were only approved for one and we felt lucky for that.

Well Worth the Work

All of us moms know we need to fight for our kids, and we need to remember that. Don’t rely on anyone else to fight our children’s battles— it has to be us to do that. What kept me going? The fact that Evan’s demo devices had him hearing better than he ever had before.

The day we got the demos, Evan walked into the bathroom with his shoes on. When he came out, he said, “Mommy, my shoes—they make noise.” Now, at night, he doesn’t want to take them off. It’s still amazing to watch him explore and experience little noises for the first time.

Fighting for what we deserved has helped shape Evan’s future. It’s a lot of work, but well worth it for a positive future for my son. I couldn’t have had a better partner along the way than Oticon Medical. The experience has been fantastic, and more than anything, the people at Oticon Medical LISTENED when no one else did.

Are you working to get insurance coverage? We can help. We can also help connect you with others who have successfully navigated the insurance process. Let us know in the comments section below or on Facebook or Twitter if you’d like help or to be connected.

Advocating for Eva Early On

We were thrilled to meet Jodi and Eva last year at our advocacy conference in San Diego. Jodi is passionate and dedicated to helping other parents navigate what can be a very confusing time. Here, we hope to help extend the reach of Jodi’s valuable advice and experience.

By Jodi Sternoff

We found out Eva had Microtia/Atresia a few minutes after she was born.  Our nurse summoned my husband over quietly to point out Eva’s ear was missing.  It was a huge shock to us, and it scared us that the medical staff had not seen this before in the delivery room.  They couldn’t even tell us what her condition was called. Looking for answers, my husband did some research that night on his Smartphone—that’s how we figured out Eva had Microtia/Atresia.

A week or so after we left the hospital we went to get her a BAER (Brain Stem Auditory Evoked Response).  When we were at the appointment, nothing was ever mentioned about getting her a hearing aid. But, in our online research, we saw that some children who had Microtia/Atresia were wearing them. So, when we came back a few weeks later, we decided to ask about getting her a hearing aid. We were shocked to hear that this particular hospital did not offer BAHA’s for children with unilateral hearing loss. It did not make any sense to us, but we were told that we could go to another local hospital if we wanted to order one. We really appreciated that this hospital letting us know where we could order a BAHA for Eva. I called to make an appointment at the other hospital shortly after.

During the summer of 2011, we made Eva’s first appointment to learn about BAHA’s at Virginia Mason Medical Center in Seattle, Washington. We were given two different BAHA’s to try for a few days each.  Eva was so young when we tried them. My husband and I had a hard time deciding which one to get, since Eva could not communicate this with us.  We decided to go with Oticon Medical’s Ponto Pro because it seemed more comfortable for her head.  I liked the material of the softband and the small shape of the device.  The material of the softband was very important, because I knew she would be wearing this all the time and wanted something comfortable.

This slideshow requires JavaScript.

When we first started doing research we found a few articles stating the importance of wearing a hearing aid when you have unilateral hearing loss.  We read an article that said it is beneficial for children with unilateral hearing loss to wear a hearing aid starting in infancy.  We read that the hearing aid will provide a more ‘balanced’ hearing and allow a child with unilateral hearing loss to pick up incidental language around them, thereby preventing some of the possible language delays. Waiting to amplify until school age (until the child is in kindergarten or older) may be too late, as their brain will take considerable time to learn how to use the information to localize sound and listen in noise.

Persistence Pays Off

Looking back, my husband I are so happy we decided to have Eva get her Ponto Pro at such a young age.  We are also grateful for her speech therapy she receives from the Listen and Talk Program, (an early intervention program from birth to 3).  Eva recently had some tests done because she is graduating from early intervention and will transition to our local school district for services. We are currently working with our school district to map out Eva’s plan, but her speech is so good she does not need speech therapy.  She was tested between the age 2 years nine months and 2 years, 10 months. Her score for the “Receptive One-Word Picture Vocabulary Test (ROWPVT)” was at 3 years, 7 months. For the “Expressive One-Word Picture Vocabulary Test (EOWPVT)” she had the vocabulary of a child who was 3 years, 5 months.  When she was tested for “Articulation and Phonology (CAAP)” her results were at 3 years, 11 months. We are just so pleased that we got her Ponto Pro at infancy and feel this has been a big factor in her speech development.

Getting Started Eva Aquatinted with her Ponto Pro

It was not easy at all to have her start wearing her Ponto Pro.  We started out just having her wear it a few hours a day.  As she got older and held her head upright it was a lot easier having her wear it more often. Since we had her wearing her Ponto Pro at such a young age she did not reject it as much as I hear older children do. Sometimes, when you start kids at an older age it is shocking to hear sound and they might refuse to wear it.

At the beginning of Eva’s toddler years she did like tearing it off.  We had to teach her to not throw her hearing aid off whenever she felt like it.  A lot of the time she would just chuck it when she was tired of wearing it. It took time to teach her to hand it to us when she was done rather than throwing it. I have had many times frantically searching for it when she threw it behind the couch, or in unreachable spots in the back seat of our SUV.  I was nervous we would lose it so I had her wear the safety clip at all times. I found out early on the string was not strong enough and now use fishing wire to connect the safety clip.

There have been many times during Eva’s early stages of her wearing her Ponto Pro that she has taken it off. I wondered if she was tired, or if it was too loud for her, or if she just was taking it off because she just felt like it. If I thought she was tired or we were in a loud environment I did not make her wear it. However, if I thought she was just taking it off for no good reason I would put it back on and explain to her why I was doing that. Yes, I found myself doing this over and over again and it seemed tiresome doing this over and over again. However, now that she is a little older, I am proud to say that that she does wear it for long lengths of time.  I am also finding at times my daughter is asking me to put on her Ponto Pro when she is not wearing it.

If you have tips for how you get your child to wear their device, please let us know in the comments below. Also, if you’re looking to speak with other parents, including Jodi, let us know in the comments section below and we can help make connections. You can also connect with community members on Facebook or Twitter

Regan Lee’s Big Day

We were lucky enough to take part in Regan Lee’s big day– his device fitting. Tricia Nechodom, Au.D., F/AAA, Doctor of Audiology at Trinity Health Center was kind enough to share photos.

This slideshow requires JavaScript.

“We saw Regan Lee for his device fitting yesterday and here are some pictures of the day! I [Tricia] am on the left, Sarah (Regan’s mom) is holding him and Dr. Jerrica Maxson, Audiologist, is on the right. Jerrica was the audiologist who diagnosed initial hearing loss via ABR and did much of the initial counseling with Regan’s family prior to my arrival at Trinity, Tricia shared. “As I fit all of our osseo-integrated devices, I am his lead Audiologist but we team on all of our kids with hearing loss for best outcomes.”

Do you have photos of your big day? We’d love for you to share in the comments section below, or on Facebook or Twitter.