Our family’s connection to hearing loss started with our daughter Rylann who was diagnosed as having profound hearing loss in both ears in July 2009.
2. Was Rylann born with hearing loss? When was your daughter diagnosed?
We don’t know if she was born with hearing loss or it happened shortly thereafter. She passed her initial newborn screen at the hospital when she was born. We thought that she was a normal hearing child. At about 5 ½ months old my husband started to question whether she could hear or not. I thought he was crazy and I totally believed she could hear just fine. After doing some at home tests like banging pots behind her to see if she would turn, I then realized she may have a problem. Our pediatrician recommended getting her tested right away. When Rylann was retested she was diagnosed with profound hearing loss in both ears.
3. Please share a little of her journey-did she start with aids? Did she ever sign? Did she get birth to three support?
Rylann started with hearing aids when she was 6 months old. We knew that with profound hearing loss they may not be enough help to provide her the level of hearing she would need to develop speech. At that point we knew she most likely would be on the path to get cochlear implants. She wore the hearing aids for the next 6 months which only gave her environmental sounds, but still critical to keep her brain working with at least some sound.
Sign language during that time was limited to standard baby signs due to her age, which did help in our communication with her. We then progressed into verbs and a lot of nouns as she was getting older, but we never signed sentences or even more than three signs in a row.
We really didn’t receive Birth to Three support where we were living at the time, and didn’t fully understand there were different Birth to Three Programs we could get involved with. We should have taken more time to reach out and understand our options. Rylann did receive all her therapy at Children’s Hospital of WI since she was 6 months old.
4. When did she get her cochlear implant(s?)?
At the time of her implantation in 2010, the FDA had approval for cochlear implantation for children 1 yr old. Our insurance company also stated she had to be 1 yr old to be covered under our medical plan. Therefore, Rylann had bilateral cochlear implant surgery the day after her 1st birthday. Both implants were activated one month later.
5. Where are you in the journey of the implants-pre or post mapping/etc?
Rylann is almost 4 yrs old (3 yrs post implantation). She had received bi-weekly therapy through Children’s Hospital of Wisconsin for the first 2 years post implantation. On her 3rd birthday she started 3K at Lowell Elementary School’s Early Education Program. She attends half days 5 days/week. We are excited for her tremendous progress through her intensive first 3 yrs post implantation. She is doing wonderful and we really want to thank Children’s Hospital and Lowell staff for helping her and us through this journey.
6. Please tell me more about Sound of Hope Fund. What is the purpose of this fund? Where will the monies raised go? Why are you raising them?
Sound of Hope was created in honor of our daughter Rylann who has flourished due to the benefits of Bilateral Cochlear Implants and the exceptional audiology and speech therapy programs at Children’s Hospital. We want to be able to give back to the wonderful people at Children’s Hospital that have helped us and guided us along our journey. It is our honor to have Dr Friedland, Rylann’s surgeon, as physician sponsor and partner to help bring support and awareness to childhood hearing loss. Our goal is to raise funds to support the Children’s Hospital of Wisconsin Hearing Loss Program developed by Dr Friedland and Dr Runge, Chief of Communication Sciences, in collaboration with the outstanding audiology and speech therapy departments at the Medical College of Wisconsin and Children’s Hospital. It is our hope that children will be recognized with hearing impairment at an early age, and receive all of the necessary technology and therapy options to provide them with the ultimate chance to succeed. Donations will allow the development of a comprehensive database for ensuring timely treatment and intervention in all affected newborns and allow for the progression toward genetic testing of all newborns to identify those at risk of hearing loss even if not present at birth.
7. Is there a fundraiser in the near future? Where do we get information?
Our first event, Sound of Hope Charity Dinner/Auction is coming up on March 2nd at the Sheraton Brookfield Hotel. Please “like” us on facebook! You will find our invitation and more information there.
8. How can we help? How can we donate-items/money/time?
We would appreciate any help! Send a message through facebook or email me, Pam Breitigam, at email@example.com. We are looking for items, goods, or services in order to make this event a success. It can be as simple as gift cards, a bottle of wine or anything you can think of. If you prefer to donate money, checks can be made out to Sound of Hope and mailed to me at 14225 W Howard Ave, New Berlin, WI 53151. Thanks in advance for your support!