Tag Archives: advice

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.

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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

Quick Tips: 3 Handy Tips for Ponto Users from Ponto Users

One the best parts about Ponto users is their creativity and willingness to share their experiences with the community. So, we asked you for your best tips for new Ponto users, and here are three of our favorites from this week!

moistureSue Booth suggests a drying pot to keep Pontos in good working condition and moisture free. “Great for any climate, hot or cold, and handy for a little forgetful head spraying in the shower. Just take the battery out and leave the battery door open and pop inside,” Sue says. “You don’t have to buy expensive ones, mine has little tablets that soak up the moisture and changes to white when used so you know it’s time to change them. It’s also great to keep your Pontos safe over night as you sleep and less likely to lose them.” You’ll find more helpful tips for keeping you and your Ponto in top shape in this full Ponto care guide.

ponto and cell phonesHave you ever wondered about how Ponto works with cell phones and landlines? Alice Baker did– she asked: “Does Ponto Pro Power give feedback when using a cell phone and landline phone?” We let Alice know that all Ponto sound processors are fully compatible with mobile phones and wireless landline phones, so you can enjoy mobile communication without fear of noise or distortion. Now you know too! You can learn more about phone compatibility here.

Insurance Like many others, Karen Rodriguez had to do some ground work to get her insurance to cover her Ponto. Karen has had SSD since she was very small, and she had tried hearing aids and got undesirable results. Even though she was a perfect Ponto candidate, she still had to work to get covered. We connected Karen with our US Insurance support team. They were happy to assist Karen, who will now have her surgery in less than a week. Our insurance support team will be happy to support you too!

All of these quick tips and more can be found on Facebook and Twitter. Your posts help guide people through what can be a hard decision and a life-changing process. If you have a quick tip suggestion please leave it in the comments section below, and we’ll be sure to share next week. And, keep your posts coming, they are quite literally changing people’s lives!