Allie's Ears

Allie passed her newborn screening, but when she was two years old we noticed that her speech was not developing as well as we thought it should. We had her hearing tested just before she turned three. Our family has no history of hearing loss and so we were really not prepared for the news we received. We were shocked to find out that she had profound hearing loss in her right ear and mild to severe loss in her left ear. I will never forget the feeling I had as the audiologist went over the test results. It was so unbelievable. Here was a two-year-old who knew her colors and numbers, but couldn’t hear! Apparently she had been losing her hearing over time without us realizing it. We have been through many tests – including genetics testing – but no cause has been found for the hearing loss. The first two questions that we had - why and when - will probably never be answered. We moved right on to the next question - what now??

She was aided right away in her left ear and we went right to work in speech therapy at the HEAR center. We knew nothing about the process and what lay ahead for our family. Just when she had started to finally show some progress in her speech, she lost the rest of her hearing. We felt like the rug had been pulled out from under us again, but she was then a candidate for cochlear implants. She received bilateral implants on January 4, 2010 just after her fourth birthday and was activated just nine days later. The look on her face at her activation when she could hear again was priceless!

Allie now attends the Alabama School for Hearing and is showing great progress. She started turning to her name just weeks after her activation – locating sound is something she could never do with only one good ear before. She has even starting running to get the phone when it rings!

Our journey began only 18 months ago, but what a roller coaster it has been!  I didn’t know what a cochlear implant even was before. We didn’t know any families dealing with this or where to turn for information. We are grateful for the support we have received. We have a strong Christian faith so we have always known that God had a plan for Allie’s life. It has taken some turns we were not expecting, but we are looking forward to watching it unfold!

Hear more about Allie from her story featured on the Alabama School for the Hearing video

Written by Natalie, Allie's mom

Alabama School for the Hearing

A few months ago, I was invited to observe a pre-school class at The Alabama School for the Hearing currently housed at The Canterbury United Methodist Church in Birmingham, AL. Children's Hospital and Alabama Ear Institute collaborated to give parents of hearing-impaired children a preschool that focuses on developing and increasing verbal language skills through listening. According to Nancy Gregg (Certified Auditory-Verbal Therapist) who teaches at the school, "The curriculum is literacy- and language-based. Each child also receives individual parent-centered therapy sessions." She encourages parents interested in the school to come by and visit, which is exactly what I did.

When I entered the classroom, I first noticed the beaming faces of these young children. All had smiles and seemed to be having a great time. The teachers (all Certified AVTs) were very patient with the kids and the small group size made it easy for everyone to speak, be heard, and listen to others. A classroom sound field FM system made teachers easier to hear through the children's hearing devices. They sang songs, they had lunch, they played, and they were encouraged to listen and speak the entire time. Not a minute was wasted when valuable language and listening skills could be incorporated throughout the day.

Currently, classes are held three days a week at the large and beautiful church, tucked away just outside of the busy streets of Birmingham. If you have a hearing-impaired child in Alabama (ages 3-7) and are interested in learning more about this school, feel free to email Nancy for more info.

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.

Growing up deaf

Robert Brown appears to be the typical teen. He's about to enter college and pursue his passion in the medical field, he goes to parties, he hangs out with his friends, all things you expect to find an average eighteen year old doing. He's played soccer since the age of seven and spent the last six years in the school band, the last three being the high school marching band. But what makes him special?

One of his special qualities is his ability to stand alone in front of a room full of people and get them all to laugh with his witty charm. You see, Robert is quite an advocate. He has spoke at many presentations on cochlear implants, early intervention, medical conventions and other childhood hearing loss events.

Robert's parents found out he was deaf when he was about two years old. He received his first cochlear implant when he was around three and a half years old and received his second when he was sixteen. Robert's parents taught him how to hear and speak once he was properly amplified. Now they are the ones sitting in the audiences listening to their son speak about what it was like for him growing up deaf in a hearing world and about how thankful he is to be able to hear with his cochlear implants. He has a great sense of humor and those attending his events appreciate his viewpoints as many of the audience members are professionals who work with deaf or hard of hearing kids, or parents of children with hearing loss. Robert is a great role model for all the Alabama children growing up with hearing loss. He's a remarkable young man and we wish him all the best as he begins his college education this Fall. Robert has not only been inside the operating room as a patient but he's been fortunate enough to witness cochlear implant surgeries already and other surgical procedures as well. Robert had rather be participating in the O.R. as a staff member rather than a patient so he's excited about his future as his parents are also. His mom has been a dedicated nurse at Children's Hospital for years. Robert Brown is showing our Bama kids how far a positive attitude, a sense of humor, and a great foundation can take you.

Bama's Bright Light

Every so often Bama Ears would like to shine the Bright Light on an exceptional parent. Our first to highlight is Mrs. Jennifer Andress. Her two children are hearing impaired due to Connexin 26. John (age 6) is currently using hearing aids, and Will (age 4 ½) wears bilateral cochlear implants. Jennifer serves as V.P. of the Service Guild, which is a service organization solely dedicated to The Bell Center’s Early Intervention Programs. When she’s not running marathons chasing after her two boys, she's running them for The Bell Center partners-in-training program for the Mercedes Marathon. She and husband Keith also run in Atlanta’s Thanksgiving Day Marathon as well as other races in our area. Looking at her active lifestyle you would never guess her past. Here’s a little hint ...

(She and her son John are closing the van's back door.)

When her first child, John, was 11 months old, he needed tubes for his ears, and this is when they found out he had a hearing loss. With Jennifer already carrying baby number two, John was fitted for aids and soon after, she found out she had precancerous growth in one of her breasts. She has a long history of breast cancer in her family so while 24 weeks pregnant and a 1-year-old, she had a mastectomy. A few months later baby Will was born, and she soon began radiation. But before that treatment began came Will’s hearing tests, in which he was also determined to have hearing impairment just like his big brother.

A few months after completing her radiation, Jennifer had a second prophylactic mastectomy and breast reconstruction with an eight-week recovery period. Remember, Jennifer also has two hearing-impaired children to care for, but she manages along with her very supportive and loving husband. Within weeks of her final recovery, baby Will had his first cochlear implant surgery and a year later had his second.

Jennifer says she’s had great support throughout from all of their doctors, health care professionals, church, friends, family, and notes “God is great!" Today when she’s not making commercials for Breast Cancer Awareness, or helping with the Bell Center’s service organization, or running half-marathons, she’s preparing John for first grade and still has a year to prep Will for kindergarten. Congratulations, Jennifer, Bama's Bright Light is shining on you, a true inspiration.

If you would like to nominate someone as an exceptional parent for Bama's Bright Light, please email us at bamaears@yahoo.com . They need to be an Alabama Parent of at least one child with hearing loss.

Chronicles of an Extreme ENT

Bama Ears recently had an opportunity to talk to a local ENT who’s been giving more than the gift of sound to his patients. This doctor with an ironic name, Dr. Audie Woolley, has recently co-founded The Alabama School for the Hearing, and is Medical Director of the Cochlear Implant Program at Children’s Hospital. He’s performed just over 280 cochlear implant surgeries and over 50 BAHA surgeries. He’s also written numerous manuscripts for scientific journals as well as various other publications.

But this doctor is also a professor in his field. He says he loves teaching the residents. He notes that giving them the tricks of his trade and sharing his experience will benefit these new doctors and allow them to help more patients than he himself will ever come in contact with. But what we found out is he’s sharing more than his wisdom inside the O.R. Though he wouldn’t admit to belting out a solo performance, he does admit that music is a big part of his life, and enjoys hearing it during his many hours spent each week in the operating room. Whether he’s providing a child with a surgically implanted hearing device, performing atresia surgery (no ear canals), or any other head/neck surgery such as tracheotomies, cyst and tumor excisions and a variety of other surgical procedures in the field of otology and otolaryngology, music is likely playing in the background.

He tells us that one of his sons, 20 year-old Alex who is a percussionist and keyboard player, is actually his favorite musician. Alex is in the process of transferring colleges so he can pursue his dream of entering the music business. But what do you think a Texas born doctor would listen to while he’s actually giving our deaf children the possibility to hear music? Here’s what he told Bama Ears:
“Depending on the case, I choose the music anything from mellow to rock. I love Dave Matthews, Ryan Adams, The Fray, Counting Crows, Sugarland, U2 and the old classics REM, Zeppelin, James Taylor, Jackson Brown, really too numerous to name.”

We just had to ask since he’s so musically driven, but we were disappointed to find out he does not hold any karaoke titles or line dancing championships (yet!). Though he’s not too interested in the line dancing, he does tell us that being a Texas native, he claims to have a mean two-step. If anyone has video evidence of this, Bama Ears will be glad to accept the footage!!

We also asked if he could name one Kelly Clarkson song. He could not, but he is quite familiar with Carrie Underwood’s music. Let’s not assume he’s an avid American Idol fan like many of us are, but he is a music fan. Though he’s heard the name Miley Cyrus, he could not give us her television alter ego of Hannah Montana. We did not deduct any points off for that! After all, he is a grown man and not a five year old little girl, though he does have a dancing and singing daughter Emme who is eight years old. You’ll read more about her and the rest of his family in a future post.

It’s quite apparent that his residents are benefiting from his wisdom, his music, and his humor as well. Practical jokes are quite common from this ENT. There are more stories to come about this Alabama surgeon in future articles. In our next chapter of Chronicles of an Extreme ENT, you’ll find out why we call him Extreme….

Ariana's Story

Ariana is 11 years old and getting ready to go to middle school next fall. She will be in the 6th grade, and she wears bilateral cochlear implants. Ariana has one older brother and one younger brother. She is a very smart and happy child and enjoys swimming, baton, and art. Ariana had a neat opportunity to meet Marlee Matlin last year at one of the local elementary schools. It seems like just yesterday, though, that our healthy baby girl was just getting over her first cold when she was suddenly stricken with bacterial meningitis at 4 1/2 months old. Ariana is very lucky. She beat a lot of odds. She was in ICU for 12 days.

When she was 15 months old, I went into her room and she did not hear me call her name. My heart sank. I knew at that moment there was a hearing loss. We have no idea if it is from the meningitis itself or a result of the antibiotics that helped save her life. We later found out that she was deaf in her right ear and had a mild to severely sloping loss in her left ear. We chose not to give her a cochlear implant early on because she received great benefit from her hearing aids and was making great progress in her speech and language. Cochlear implants were not as popular in 1998 as they currently are. We were a little afraid back then.

Thanks to wonderful speech therapists, doctors, and an oral deaf preschool, she continued to make lots of progress. It wasn't until she was almost 8 years old and going into the 2nd grade that she hit that wall. She was only getting 35% of aided hearing and she came to us asking to please let her get a cochlear implant. A lot of people in the past thought she would not be a candidate due to ossification around her cochleas from the meningitis. She did have lots of ossification, but she was so blessed to have two successful surgeries. She had surgery on her better ear first, in August of 2005, and she received her second cochlear implant in November 2005 due to that ear was ossifying rapidly.

I cannot put into mere words how it has changed her life. If I could do it all over again, I would have gotten her this wonderful gift when she was first diagnosed with a hearing loss all those years ago. It has been a long journey, but such a rewarding one! My favorite quotes are "love is pulling together against all odds" and "never never never give up".

Written by Kia, mom to Ariana.
Keep up with Ariana at her blog:

http://rainfallsdwn.blogspot.com/

Sound Check Mama: It's Riley

Riley has bilateral cochlear implants – the first surgery was done in October 2003, the second in April 2007. She was diagnosed with severe to profound, bilateral sensorineural hearing loss at 18 months, which is a long way of saying she could hear virtually nothing because of damage to the cochlea in each ear. Genetic tests revealed the Connexin 26 gene mutation as the cause.

Today she is 7 and excelling in first grade, with a little help from her ADD meds and great teachers. She plays soccer and softball, and she's getting ready for her first dance recital. She loves to sing, jump on the trampoline, read, ride her Big Wheel and swim, and except for her brightly colored ear accessories, she's a normal little girl.

We're so thankful that Children's Hospital is there when we need it, and we're blessed that so many caring people have helped us on this journey to sound. You can read more about that journey at my blog Sound Check Mama.

Ready to hit and run
Riley rocks out to Guitar Hero
Her princess pose at dance class

Cochlear Kids

Meet brother and sister team Gage and Brooklyn Blakely. Gage is now eight years old but was born deaf. He has Goldenhar Syndrome and wore hearing aids for over three years until he received his first cochlear implant. At age seven he became bilateral and will be in third grade this Fall at his mainstream public school. His sister Brook was born hearing but began her progressive hearing loss as an infant. She too wore hearing aids until she was almost three when she received her first cochlear implant and a year later became bilateral. She will be in Kindergarten this Fall at the same school her brother already attends. Both have limited support services at school. These two are very active and love being outside. Gage is all about trucks, he even makes and customizes his own toy vehicles. Although he's rarely caught sitting still having ADHD, he can sit for the longest if he just has some type of truck to work on or a big box of Legos. Brooklyn just wants to be a mom and takes very good care of her two favorite baby dolls. She can be found pushing them in grocery carts or in a baby stroller everywhere we go. She's even been spotted feeding them in a local restaurant as any good mother would do. Both used Auditory Verbal Therapy to learn to hear and speak. We are thankful to live in an area where we have access to great audiological and therapy services. We have always had a large support team to guide us through the difficult process from finding out our children were deaf to treatment for their hearing loss. We thank our doctors, therapists, family and friends for lending their much needed support over the last few years.

You can keep up with the Cochlear Kids at our family blog http://www.deafkidscanhear.blogspot.com/

Written by mom Val Blakely