A True Champion-John's Story

John's teacher Lisa, John, therapist Courtney

You may remember reading about John a few months ago on Bama Ears when we highlighted his mom Jennifer. Click here to read that story if you haven't already. A lot has changed since our summer story on this family of four. When Bama Ears last spoke to the family, Will (John's younger brother) had bilateral cochlear implants and John was wearing bilateral hearing aids. Both boys are deaf as result of Connexin 26. Over the summer, this family received the news that John's hearing and aided benefit had declined to the point where his audiologist decided that he was now a cochlear implant candidate. Below you'll find the whirlwind of events and decisions that led this first-grader into the operating room, where he received bilateral cochlear implants last Monday then walked back into his classroom on Thursday, just three days after surgery! I encourage you to read the first story if you haven't already and you will see exactly where John gets his bravery.

Mom Jennifer writes:

It was a whirlwind decision making process once we knew where we were headed: one side or both, to wait for a break in school or operate as soon as possible, etc. We first thought we would go with just one side, and wait for a break such as Columbus Day to do the other side. Things changed tremendously when we consulted his teacher Lisa, who happens to be the mother of a hearing-impaired, bilateral cochlear implant-wearing precious baby girl (click here to read their story). Lisa advised us to go as soon as possible in order to get him up and running and caught up before the 2nd 9 weeks of school. We finally got the anticipated insurance approval and with all that falling into place, we looked at September being "his month." Dr. Woolley was fitting us into his last bilateral slot in order to take advantage of a trial Cochlear was doing with the imminently-FDA approved Nucleus 5, which I had only recently become aware of thanks to Val (a Cochlear Volunteer) and her network. One week before his scheduled surgery, the FDA announced its approval of the Nucleus 5. At our pre-op appointment with Dr. Woolley that week, I became fully aware that God of course was in charge, and that my son was going to be just fine in the best hands possible (Dr. Woolley's and Lisa's), and we were getting the Nucleus 5s, the newest cochlear implants on the market! My mourning and grieving for John's hearing were over.

It took some jumping through hoops from our cochlear implant team, but the newest devices arrived and were ready on surgery day. John was so brave and excited about his new implants. Lisa and my husband had done a wonderful job preparing him for what was to come. That doesn't mean he was thrilled about being in the hospital, but he truly was inspiring with his bravery. It took around six hours for the surgery to be completed and to give him the chance to hear. We spent the night in the hospital, and he woke up once or twice and asked about his bandages. Finally at 5:45 he awoke and said, "When can I wake up?" That first day home, he expressed some concern about his partially-shaved head and had a little pain. He was down from his usual energetic self, but that afternoon he began receiving visitors, including his teacher Lisa, and Courtney, his speech therapist at school. That's all he needed to bounce right back. He began getting little gifts and sweets, and he has never been down since. The next day he was running in the yard again, and we took the dog for a long walk. We thank God he can read, so we can communicate with him by writing.

Last Thursday, 3 days after surgery, John showed his bravery once again. He entered his classroom, a little self-conscious about his hair and with no hearing. Right now he goes in for a couple of hours to read and do some of his assignments and take appropriate tests. Lisa had the class make pictures for him, and a student held up a sign that said, "Your haircut looks cool." It was an amazing moment! Another parent has told me how much her daughter has learned through all of this. John has rarely if at all complained. He is excited about this Wednesday, when we begin the activation process. I believe he will get Freedoms first, because the Nucleus 5 processors don't roll out until October. That is how under the wire all of this was!

I have met some of the most wonderful people of late. I happened to meet a man at the barbershop 3 days before surgery who had a C.I.! He is a lawyer who used to work with my husband, and I met a woman whose 4-month-old will be having this surgery in the next year. While I was introduced to her in order to tell her how great her daughter will do, she ended up comforting me at the beginning of our process as I mourned for John. Having been through this already with our younger son Will, hearing the news that your child needs surgery can be scary at first.

The Cochlear marketing rep for this area, Scott Rinehart, had a local informational meeting the day after John's surgery. I attended the meeting and met some wonderful people there as well. I am so incredibly grateful for my friends who are parents of wonderful hearing-impaired children – people I wouldn't have known otherwise but who I now cannot live without! Of course our doctor, nurses, audiologists and therapists all fall into that category as well. Finally, I have the pleasure and honor of working with Lisa's daughter at The Bell Center for Early Intervention Programs, where I volunteer. I have no doubt that God is taking care of all of us.

Will is enjoying his time at the Alabama School for the Hearing Impaired, a program of the Children's HEAR Center. He is also taking good care of his big brother while we continue his journey toward hearing again.

Bama Ears will continue to follow John on his journey and update his story after his activation, when he begins to hear sounds he never knew existed.


Kate's First HEARING Birthday

Kate celebrated her 1st Hearing Birthday with friends and family in August. She has made great progress and enjoyed celebrating and having party! Kate's genetic testing results showed that she did have hearing loss due to the Connexin 26 gene. She should have no other problems and is doing well with her cochlear implants. Click here to read Kate's story previously published on Bama Ears.

When Kate's not celebrating with her family and friends, she's having a blast at gymnastics class.

Happy First HEARING Birthday Kate!!!


Meet a local service coordinator for AIDB

Jackie Maddox, a Service Coordinator for the Alabama Institute for the Deaf and Blind (AIDB), knew she wanted to be a social worker after watching the movie Annie as a little girl. Jackie said she wanted to help children and keep them away from Ms. Hannigan so her mom suggested she become a social worker when she grew up and she did just that! Jackie loves coordinating resources and services for families. When she's not at work, she and husband Wes travel, take care of Katy (their miniature schnauzer) and enjoy Bread. She not only listens to Bread, being a huge music fan, but you may now see her eating plenty of it as well! This mommy-to-be will soon put her coordinating and managing skills to work in her own home as she and Wes expect their first born (other than the dog!).

Bama Ears asked Jackie to describe this unique partnership program that AIDB and the Children's HEAR Center have.

"I am a service coordinator who is contracted at the HEAR Center in Birmingham to provide EI (early intervention) services to children who are hearing impaired through AIDB. We serve children in a variety of ways. Some receive services at the HEAR Center and some receive services in their community. Each family has a plan that is individualized to meet their needs. We have therapists that serve in our AIDB regional center, day care settings, community settings, or home. I am a statewide Service Coordinator, so I am able to use therapists and resources in a family’s local community. A family is given the option to be served at the HEAR Center if they choose. This program opens up options in service provision."

Looking at AIDB's website we found they have many regional centers throughout the state to better serve their families. This taken directly from their site explains:

"Nine Regional Centers throughout Alabama serve people from birth all the way through life, helping them connect with the local resources they need to live a rich, full life."...

..."Each Regional Center – located in Auburn, Birmingham, Dothan, Huntsville, Mobile, Montgomery, Talladega, Tuscaloosa and Tuscumbia - offers a unique mixture of services, because each Center has been developed according to the needs of the community it serves.
The AIDB Regional Center network began in 1980 with early intervention programs serving infants, toddlers and their families. For more information, please see
http://www.aidb.org/. If you have questions about the developmental concerns of an infant or toddler, please contact Child Find at 1-800-543-3098."


CRS-Children's Rehab Services of Alabama

Bama Ears recently had a chance to talk to Emma, a Social Work Administrator for CRS (Children's Rehab Services). We asked Emma to explain what CRS is and who is eligible. Here is what she told Bama Ears.

"Established in 1935, Children’s Rehabilitation Services (CRS) is a division of
the Alabama Department of Rehabilitation Services. CRS is a statewide
organization of skilled, well-trained professionals committed to providing
quality, individualized services to children and youth with special health care
needs in homes, schools and other community settings.
Any child younger than 21 who is a resident of Alabama and has a special health care need is eligible for CRS. Individuals of all ages with hemophilia are eligible. Families participate in the cost of services for their child based on a sliding fee schedule and by using any Medicaid or insurance coverage."

What services does CRS offer?

"CRS services are available to children and youth in every county in Alabama through a network of 15 community-based offices. The CRS network provides specialty clinic and other services by doctors, nurses, social workers, physical therapists, speech-language pathologists, audiologists, occupational therapists and registered dietitians. Services include medications, surgery, assistive technology, hearing aids, hospitalization and much more."

What happens when a child ages out of Children's Rehab Services and they still need help?

"All adolescents in CRS receive transition services from a trained social work transition specialist. All eligible CRS youth are referred to Vocational Rehabilitation Service (VRS) to receive assistance with college or job placement. VRS provides specialized employment- and education-related services and training to assist teens and adults with disabilities in becoming employed. In addition, VRS works with middle schools, high schools, junior colleges and universities statewide to assist students with disabilities in receiving appropriate educational opportunities.
The ultimate goal of CRS is to transition youth with special health care needs to all aspects of adult life, including adult health care, work and independence."

What if a child has more than one disability? Are you guys equipped to handle multiple needs?

"CRS has well-trained staff that work on a daily basis with children and adolescents who have dual diagnoses. We offer specialty clinical medical programs and clinical evaluation programs in order to meet the needs of this special population."

Bama Ears specifically asked Emma what CRS can do for our hearing impaired children in Alabama.

"CRS offers hearings services, which include Newborn Hearing Screening, Hearing Assessment Clinic, Hearing Clinic and Hearing Aid Clinic. CRS audiologists have the experience to provide top-notch audiological services to Alabama's children. With state-of-the-art testing equipment, children receive the same quality evaluations on a local level that they would receive in larger facilities. If a child is found to need hearing aids, the audiologist has a vast selection of hearing aid companies and products to choose from. Many of these products would cost the parents $1,700 to $3,600 per set if purchased from a private clinic."

For more information, visit the CRS website