Bama Ears

Alabama Gives

2012-01-25T16:35:00.001-06:00

Next Thursday is the big day many Alabama Non-Profits have been waiting for...Alabama Gives. On this day, February 2nd, you will have an opportunity to help Alabama raise millions of dollars for it's non-profit organizations. Here's insider's information...you don't have to wait to donate!

The Alabama Ear Institute is among those selected to receive these donations. Here's what they say:

"Founded in 1992, the Alabama Ear Institute (AEI) continues to be in the forefront of addressing issues that impact all individuals with hearing loss. AEI accomplishes our mission through research, professional & public education and advocacy in the social and public policy arenas.

•AEI partnered with Children's Hospital and founded the Alabama School for Hearing - the only pre-school in the state for children w/hearing loss utilizing an Auditory Oral/Auditory-Verbal approach to developing spoken language (no manual communication is utilized)

•AEI advocacy efforts resulted in re-defining teacher requirements for Teachers of the Deaf in Alabama

•AEI founded the Alabama Newborn Hearing Screening Program (UNHS)

•Alabama recognized in USA Today as one of top 10 UNHS programs in the country..."

So mark your calendars or donate now! It's easy.
Just CLICK HERE.

Local Mom of Two CI Recipients on Magazine Cover

2011-06-28T15:18:00.000-05:00

Jennifer Andress, a local mom to not one but two bilateral cochlear implant recipients (John and Will) can been seen on the cover of one of several versions of July's Runner's World magazine. She and other cancer survivors were selected to be featured and represent the thousands of survivors who lace up those running shoes and go!

She's participated in many runs including half-marathons and marathons as well. Her running shoes have taken her to many different states to participate in these popular events. She recently appeared with Rick Journey on Fox 6 (click here for video)

You can read Bama Ears' previous articles by clicking here. You can view the cover of the magazine and Magic City Post's article on the marathon mom by clicking here.

Bama Ears congratulates Jennifer Andress and says thank you to her for all her efforts in not only raising awareness about childhood hearing loss but being a fantastic resource for parents of newly diagnosed children as well.

Better Hearing and Speech Month

2011-05-31T18:47:00.000-05:00

...and we must say goodbye to May 2011 which many of you know was Better Hearing and Speech Month. Here is a poem written from a cochlear implant recipient Laurie Pullins.

Amazing Grace, how sweet the sounds,

When Cochlear saved these ears of mine!

I fought to hear but now I can,

Was deaf but now I hear!

'Twas hearing aids that taught me to hear,

Enough to relieve my fears.

More precious was the world to me

The day new sounds appeared!

My surgeon promised good to me,

Said ears as good as new...

My cochlear implants are my guide and shield,

As long as life endures!

Through many trials, tests, and surgeries

I have already come.

'Tis faith has brought me sounds thus far,

And Cochlear will show me more!

When we've been there ten thousand years,

Still shining in a world of sounds

We've no less days to sing Cochlear's praise

The day we began to hear!

~written by Laurie Pullins/May 2011~
Bilateral Cochlear Implant Recipient

Fox 6 News Features Local Doctor and Children with Hearing Loss

2011-03-23T04:33:00.000-05:00

If you missed the 9 p.m. news last night, Dr. Audie Woolley was featured during an interview about cochlear implants. They continued the story right inside the O.R. and even showed patient Olivia's ear as the ear was prepped and ready for insertion of the cochlear implant. Mom to Olivia was interviewed right outside in the waiting area and could not be more grateful for the opportunity Dr. Woolley and his team of professionals are providing for their daughter. They have another child already wearing a cochlear implant.

Click here for the video of Dr. Woolley's interview

Within the last few weeks, Fox 6 has featured Lilly Mooresmith (who was also in the Dr. Woolley story demonstrating how to listen) on their show and Gage Blakely as one of Mickey's Weather Kids, all to help promote the upcoming event Hear Me Roar which anchor Janice Rogers is associated with this year. You may have seen the commercial for the event which has been airing for weeks and also contains several photos of children in our area with hearing loss. The Hear Me Roar Dinner and Auction will be on March 31 this year to raise funds for speech and hearing impaired children in Alabama. To find out more about the event, visit the Charity League's website.

Kate's Second Hearing Birthday Celebration

2010-10-11T09:06:00.000-05:00

Kate Morris looks forward to celebrating her hearing birthday each year. Click here to read about last year's event. Her cochlear implant activation was in August of 2009 and she's enjoyed hearing lots of sounds ever since.

Running for Sawyer

2010-09-29T18:16:00.001-05:00

Jennifer Andress is at it again. She's chosen another hearing impaired child from The Bell Center to run for in the February 2011 race, the Mercedes Marathon. You can visit her page here for more information about Sawyer and to donate to this worthy cause. She is asking for each person to donate $13.10 for the miles she will run. Here's what Jennifer says.

"This year I will be running for Sawyer Collins. Sawyer is hearing-impaired, like both of my boys, and just received his cochlear implants this summer. He is 15 months old, and was diagnosed with Leukodystrophy. He has a big brother, Grayson, and loves peanut butter sandwiches, hanging upside-down, and playing with his mom and dad's cell phones!"

And here's a little of what you'll find at the Bell Center...

"Children receive early intervention services including physical, occupational, and speech/language therapies; special education services; and nutritional counseling two or four times a week in a preschool setting."

Looking to the Light (Part II)

2010-08-29T15:50:00.000-05:00

(To read Part I, click here)

Praise God everything looked normal in the MRI.

My husband and I definitely know that God has his hand in our journey with Ella Marie. We know that "our plan" is not always the same as his. Looking back, we can see how God has prepared us for this point. For instance, my degree is in elementary education. I have had the opportunity to work with a child with a cochlear implant. I love to teach children how to read. Since Ella Marie will most likely have difficulty in her oral language development and reading and writing at first, I have the patience to work with her and try many strategies with her. My husband is the most loving and patient person I know. Ella Marie already has him wrapped around her little finger. He is such a hands-on daddy. We are fortunate that Ella Marie will have parents, family, therapists, and friends committed to her pathway of learning.

Where We Are Now:

Ella Marie will be having surgery in September, 2010 at Children’s Hospital with Dr. Woolley as her surgeon. She will be 15 ½ months old. Actually, Ella Marie was scheduled for surgery on August 9, 2010, but caught bronchitis in late July. Children’s Hospital informed us that any time a patient has an upper respiratory issue, surgery must be rescheduled for 4-6 weeks from the time symptoms are gone. As mentioned above, we had a feeling that Ella Marie would be a candidate for bilateral implants. We were definitely headed in that direction. We wanted them as fast as we could have them. We battled with the decision on having simultaneous or sequential surgeries. On the one hand, one surgery means one recovery, activation, and stress on us. On the other hand Ella Marie has done extremely well with her hearing aids. According to testing she is not showing a delay in language at this time. I have read a lot of research and had her tested multiple times at multiple hospitals/pediatric audiologists/cochlear implant centers, and decided to try one implant at this time while knowing that we may choose to implant the other ear soon. It was a very hard decision because this was a complete 180 in the decision that we first thought we had made earlier in the process. Ella Marie attends Auditory Verbal Therapy at the Hear Center every other week and will receive therapy weekly following her surgery. Through genetic testing, we discovered she has Connexin 26. I have started a blog for Ella Marie describing our journey. I am currently typing up all of my written notes, and it should be updated soon. You can access and follow our blog at Learning to Hear God. In the blog, I try to cover all of the activities and developmental play that we engage Ella Marie in which has made her blossom.

How God Has Worked In Our Life Through Ella Marie

I titled this “Looking to the Light” a very special reason. Being our first child, Ryan and I had nothing to compare Ella Marie to. If she was crying, we didn’t know if she was hurting or if it was due to just being a baby. Being prone to ear infections, we knew that she cried a lot from those. One thing that we noticed when she was very small was that when she was crying or very upset there was one thing that would make her feel better and comfort her. She loved the chandelier light in her bedroom. When she would start crying uncontrollably, Ryan or I would stand under the chandelier and raise her up and down under the light. She was fixated on the light. It always made her feel better. What a lesson to us! Throughout this process there have been a lot of ups and downs. There have been a lot of days where I cried and wanted things to be different but Ella Marie taught us that we need to “Look to the Light” just like she did. Just like Ella Marie, when I looked upward I felt better. When I feel like life has gotten so complicated, Ella Marie was teaching me a simple lesson “Look to the Light”, Jesus Christ. Although Ella Marie’s hearing loss was not what we wanted, when we focused on the Light, God began to unfold His plant on how he had prepared us our whole lives for having a little girl with hearing loss. From teaching a first grade student in a previous year with a cochlear implant to my career choice as first a first grade teacher and currently university professor where my focus is early childhood language and reading, to providing us with supportive family and friends who all pitch in and are committed to supporting Ella Marie. God taught me this lesson through our little girl. We are committed to serving as a resource for parents of children with hearing loss.

Below, I have listed a few Bible verses that have spoken to us throughout this journey.

When Jesus spoke again to the people, he said, "I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life." John 8:12 (NIV)

Look to the Lord and his strength; seek his face always. I Chronicles 16:11 (NIV)

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 (NIV)

Lisa Clayton, mom to Ella Marie

Looking to the Light (Part I)

2010-08-11T12:55:00.002-05:00

We are new parents to our first daughter, Ella Marie. She was born in April 2009. Our journey of raising a child who would need extra help started the day we were leaving the hospital. Ella Marie did not pass her newborn hearing screening, and we were told not to worry that it was probably just fluid. Of course, as a new parent I was very worried. Everyone tried to tell me not to worry, but those who know me knew that I would. I remember my husband Ryan holding Ella Marie in the hospital and making this statement, "She is such a special girl and she is going to accomplish special things."

At that point it was almost as though I knew something was wrong. Of course, my husband was just talking about Ella Marie and did not think that this statement would linger in my mind. I too know that Ella Marie is special and will accomplish great things and look forward to watching what God has in store for her.

After leaving the hospital 48 hours after her birth, we went home and spent time as a family. We went to the pediatrician's office for her 1 week checkup. She did not pass again at 1 week and we were told not to worry that they still saw fluid in her ears. At two weeks old she was diagnosed with double ear infections so the doctors continued to believe that she may not be passing because of fluid. At five weeks old we went to Children's Hospital in Birmingham, AL and they told us that as hard as it may be we needed to wait another six weeks to determine if it was fluid. At this same visit tests were run and she failed those as well. Finally after multiple failed tests I asked for a referral to Shea Clinic in Memphis, TN. Again, Ella Marie failed her tests there. They set up another appointment about a week or two later and at one day before Ella Marie turned 3 months old a sedated ABR (Auditory Brain Response test) told us that she was deaf. She did not respond in either ear at 90 decibels. Wow! We were shocked.

We thought she may have some hearing loss, but severe to profound hearing loss was not what we were thinking. So of course it has been an emotional roller coaster, but we also look forward to learning along with Ella Marie and providing her with the best chance for success. After finding out that Ella Marie was deaf, we learned that most likely she would be a candidate for bilateral cochlear implants. Before implant surgery can take place, you must go through a trial period of using hearing aids. She received her hearing aids at 3 1/2 months old. Right before Ella Marie turned four months old, Children's Hospital ran an MRI brain scan to see if her auditory nerves were present. Without nerves present Ella Marie would not be a cochlear implant candidate.

(to be continued)

Written by Lisa Clayton, Ella Marie's mom

Dr. Audie Woolley in ENT Today

2010-07-19T21:23:00.000-05:00

A local ENT, Dr. Audie Woolley, was recently featured in the magazine ENT Today. Click here to read the full article. The article was about the benefits of bilateral cochlear implants. Bama Ears ran a series of interviews with Dr. Woolley called Chronicles of an Extreme ENT back in 2009.

Chronicles of an Extreme ENT I

Chronicles of an Extreme ENT II

Chronicles of an Extreme ENT III

Food Fundraiser

2010-05-16T07:17:00.001-05:00

Zoes Kitchen will donate 15% of sales on Thurs. May 20, 2010 to the Children's HEAR Center but you must print a flyer and present it between 2-8 pm at 1830 29th Ave S, Suite 115

If you can't print this one, email Bama Ears and we can send you one via email. Check out the Zoes Kitchen Menu here.

"Toyraiser"

2010-05-01T06:33:00.000-05:00

WHEN: Tues May 18 & Wed May 19

9:30 a.m. to 3:30 p.m.

WHERE: The Children's Hear Center Lobby

WHAT: Visit an extensive display of top-quality educational toys, books, and games from DISCOVERY TOYS. All are designed to help children learn by play.

WHY: These products are not generally available elsewhere and all are unconditionally guaranteed for life! Shop for the children in your life and your purchases will earn FREE Discovery Toys products for the HEAR Center.

Can't attend? You can still participate by viewing the products online and then calling (404 325-8697) or e-mailing your order to DT

Pancake Breakfast Fundraiser

2010-04-13T20:18:00.000-05:00

Second Annual Charity League Pancake Breakfast

April 24, 2010

8:00-10:30 am

Golden Rule BBQ

744 29th Street South

Birmingham, AL 35233

and

Special Mother's Day Breakfast

Golden Rule BBQ in Lakeview

May 8, 2010

8:00-10:30 am

For more info click here

These events will benefit the Children's HEAR Center

Allie's Ears

2010-04-06T17:46:00.000-05:00

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

PEEPs

2010-03-11T04:42:00.001-06:00

Alabama has a new parent mentoring program for families with children who have hearing loss. It's called PEEPs, Parents Educating & Encouraging Parents. A team of five Parent Mentors will volunteer to work directly with professionals, from Teachers of the Deaf, Early Intervention, speech therapists, doctors, anyone who works with children who have a hearing loss, gathering current and useful information from these sources and serve as an additional support to the families these professionals service. Parent Mentors will connect families with other dedicated Alabama volunteers as well, who guide new families and offer additional support. You can find out more about the PEEPs Program at The Children's HEAR Center or at our blog Alabama PEEPs.

Although the PEEPs program is currently housed at The HEAR Center we are not limited to its patient base. We are a parent group and can service all families in Alabama who can benefit from our mentors. Professionals give PEEPs no patient information. Instead families are offered ways to contact the mentors for support through email and our website.

The Charity League's Rhinestones & Wranglers Event

2010-03-08T05:01:00.000-06:00

The Charity League announces it's annual

Rhinestones & Wranglers event to benefit the Children's HEAR Center and E.P.I.C. School with dinner, drinks, live music, and an auction

Tickets are $75

Event is at B & A Warehouse

March 25, 2010

6-9 pm

Find out more here

Running for Lilly

2010-02-02T05:28:00.005-06:00

Jennifer Andress, a dedicated advocate for families with special-needs children, has recently combined several of her favorite things in hopes to not only raise awareness for Lilly's condition (Mitochondrial Disease) but also transfer that awareness into raising ca$h for a charity. Jennifer has been an avid runner for years now, and being a cancer survivor has given her even more reasons to put on her favorite running shoes, crank up some Pearl Jam, and enjoy the fresh air while running for miles. She recently decided to enter her first full marathon (Mercedes Marathon), and raise money for The Bell Center on Lilly's behalf. Lilly and Jennifer's own children have something common, all are deaf and have learned to hear with cochlear implants. We wish Jennifer and Lilly good luck on Feb. 14. Click here to read more and find out how you can help Lilly and The Bell Center.

Alabama School for the Hearing

2010-01-21T14:56:00.000-06:00

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.

Children's HEAR Center Charity Concert

2009-12-21T16:50:00.004-06:00

Todd Simpson and Mojo Child, one of Birmingham's most popular Southern rock/blues bands, will be at Workplay on Jan. 9, 2010, with proceeds going to none other than The Children's HEAR Center!

Alabama Power and Tom Williams Lexus graciously sponsored the event sure to attract music fans from all over the state of Alabama.

Order tickets HERE! and get a sneak peek at the band HERE!

We thank our sponsors and Todd Simpson and Mojo Child for doing this for the Children's Hospital outpatient clinic – The HEAR Center. This band is no stranger to sell-out shows so order your tickets fast. They are $20 each and on sale now!

Todd is also no stranger to Children's Hospital. Having been born with DiGeorge Syndrome, he's spent many days (and nights) right inside the walls of the Birmingham hospital. If you want to donate to The HEAR Center directly, CLICK HERE to see how. Stay tuned for more on this and other exciting news about Alabama deaf/hard of hearing children.

November '09 Family Get-Together

2009-11-09T11:04:00.006-06:00

Sunday Nov. 8, was the Children's HEAR Center family "get together". Many families turned out for the gorgeous day at the park to swing...

...to participate in many arts and crafts activities...

to have their
faces painted...

and to just hang out with their therapist...

Thank you HEAR Center for providing all the fun for the families you serve. What a great way for people to connect who share a passion for children with hearing loss.

HEAR Center Family Fun at the Park

2009-10-20T13:09:00.000-05:00

The Children's HEAR Center

announces it's family get together

at Homewood Park & Pavilion

1632 Oxmoor Rd, Birmingham

November 8th

2-4 PM

Call Tiffney for details or further information

(205)558-5816

Enjoy face painting, arts/crafts and refreshments

This will be for HEAR Center families only

A True Champion-John's Story

2009-09-22T05:41:00.013-05:00

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

2009-09-19T06:23:00.004-05:00

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

2009-09-15T08:52:00.020-05:00

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

2009-09-03T19:09:00.010-05:00

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

AEI-Summer Institute in AVT

2009-08-31T13:43:00.008-05:00

Alabama Ear Institute (AEI) held its 6th annual Summer Institute in Auditory-Verbal Therapy last month in Birmingham, AL under the AEI Auditory-Verbal Mentoring Program. This program has included over 1200 professionals receiving training since it began in 2003. The two-week Summer Institute not only provides these professionals with workshops to increase their knowledge but also allows them to practice and improve their therapy skills with the families who volunteer to participate as therapy recipients. The professional participants actually divide into teams and conduct A-V therapy under coaching and guidance of a LSLS Certified Auditory-Verbal Therapist. These professional participants are primarily those who provide services to children with hearing loss and their families such as Speech-Language Pathologists, Special Education Teachers, Teachers of the Deaf, and Audiologists. So far the participants have arrived at AEI's program from thirty states (Canada and Argentina as well) and have included members of university hospital cochlear implant teams, State Schools for the Deaf, nationally acknowledged Oral Schools for the Deaf and many more! Here is some of the participant feedback:

"For the first time, I feel like I was being evaluated to help me improve my skills and not just a job performance."

"For the first time, I attended a workshop where I actually learned skills I can use. I am seeing results in the children I work with already and it has only been four weeks!"

Harry Wooten, executive Vice President of AEI says,

"The Alabama Ear Institute gratefully acknowledges the support of our families and precious children without whom we would not be able to provide this training. Because of their willingness to help, professionals all across the country are now impacting the quality of life for children with hearing loss and their families in their communities."

Lullabies on the Links

2009-08-28T11:30:00.004-05:00

Lullabies on the Links hosted by EWGA of Huntsville, Alabama is proud to present their Lullabies on the Links charity golf tournament where ladies from all around will tee off to raise money for the Children's HEAR Center in Birmingham. The HEAR Center routinely manages more than 500 hearing impaired children, integrating audiology and speech services into one program. There are plenty of sponsorship opportunities available as well for the event. For more information on Lullabies on the Links created by Bama Ear's very own Tiffani Hill-Patterson (mom to Riley, who hears with bilateral cochlear implants), please contact:
Rene Gilliland
Children’s Hospital Outreach
256-682-8115
rene.gilliland@chsys.org

Or register online at: www.ewgahuntsville.com

Two Lady Best Ball Invitational Charity
Golf Tournament
Benefit the HEAR Center, Children’s Health
System
GOOSE POND COLONY
Scottsboro, AL
September 26th
8:00 A.M.
$65 per person

Taking CHARGE

2009-08-08T08:58:00.015-05:00

I don’t know why I didn’t read "Choices in Deafness " from cover to cover. Looking back on it, I probably should have read it at least twice. But when we began our journey with a profoundly deaf daughter, the initial decisions were fairly straightforward. Would we begin sign language or would we pursue hearing and speech through a cochlear implant? There were bumps in the road, but relative to all our other decisions, it was not a hard choice to shoot for the moon with a cochlear implant. My husband and I are optimistic people and I don’t like to apologize for that, but in the case of our daughter, Adele, things don’t always go as planned.

Adele made quite an entrance to the world just over 5 years ago. With no warnings or complications during pregnancy, everyone was surprised when she needed resuscitating at birth. She was whisked to the NICU and there were not many encouraging words for us first-time parents. There was literally no time for a single “congratulations” before the silence of worry and concern set in. Within a few days, Adele was diagnosed with CHARGE Syndrome, a complex genetic disorder that affects multiple areas of development. Over the next three months in the hospital, almost every specialist had something to add to her list of diagnoses, which included inability to swallow, heart abnormalities, and possible blindness; so the fact that Adele had failed several hearing tests just fell into the pile of bad news. It would be almost a year before she was medically stable enough to really consider our options for hearing.

Because she was in-patient at Children’s Hospital for several months, the Hearing and Speech audiologists were able to see her often. We also had time to learn more about CHARGE Syndrome and found out that 90% of patients have hearing loss and many are also vision impaired. In fact, CHARGE Syndrome is the leading contributor to the deaf-blind population. Thankfully, by the time Adele was 6 months old, she was showing signs of good vision and we knew she would not be blind. We were elated that she could see and continued to think positively and prayerfully about her hearing.

Adele was wearing a hearing aid at 9 months and multiple tests had confirmed that she was profoundly deaf. As her medical condition became more stable, we began making visits to the HEAR Center to discuss our options. As with all implant candidates, it was a team effort. Our speech therapist was focused and realistic, our surgeon was experienced and thorough, and we as parents listened and processed everything as best we could. It was decided that she was a good candidate, but due to inner-ear abnormalities and facial paralysis, there were a few extra steps necessary to determine which ear to implant. Dr. Audie Woolley referred us to the University of Michigan for a second opinion with his friend and colleague, Dr. Steve Telian, and also for a procedure to test the nerve viability on both sides (promontory stimulation). The results of that visit were positive to go forward on her right side, (opposite facial paralysis) and we allowed ourselves to get excited.

Adele’s surgery day did not go as expected, and midway through the procedure Dr. Woolley let us know she would probably not be able to get an implant. Though undetectable on all the previous imaging, Adele had a large blood vessel blocking the path to the cochlea, putting her at increased risk for complications. It was a huge disappointment, but, thankfully, it didn’t last long. A few weeks later, Dr. Woolley had a new plan to work around the vein. Working together with Dr. Telian, Dr. Woolley successfully implanted Adele’s right ear in December 2005; it was a very good day.

Adele’s activation day was not as dramatic as some, but we were delighted to begin Auditory-Verbal thera py. Adele made some progress, but after nine months of therapy she had not mastered the first-level benchmarks. Our concern was strong enough that along with our AVT (auditory verbal therapy) therapist's recommendation, we began looking at sign language options. Up to this point, our decisions about Adele’s hearing had not been that difficult. All of our hopes had been in the implantation and with hearing and speech. Choosing which type of sign language – Signing Exact English or ASL – was much more difficult.

We knew virtually nothing about either type of sign language and were very anxious. We immersed ourselves in reading materials, the Internet, and tried to find unbiased opinions. Even now, over 2 years later, I don’t know how anyone can make a decision between SEE and ASL when you have so little personal experience. Nonetheless, we officially chose SEE because of the emphasis on English word order and our long-term goals of strong reading and writing skills. However, ASL was also a part of our world because of our involvement with other special-needs children at The Bell Center and Hand in Hand, and also the wonderful PBS program “Signing Times.”

This was a period of quick acquisition of sign language and a first introduction to Deaf Culture. What a new world for us! Watching Gallaudet’s documentary Through Deaf Eyes made us excited for how accomplished people with hearing loss can be. But it also made us very sad because we were starting to realize that often people with multiple disabilities, such as CHARGE Syndrome, are not a part of Deaf Culture. Through other readings and discussions, we learned that sometimes this is by choice but oftentimes it is by exclusion, which made us extremely concerned for Adele’s future within the deaf community, SEE or ASL.

Balancing that sadness, however, was the delight that Adele was learning signs as quickly as we were. With CHARGE Syndrome, there is a possibility of cognitive impairment and since she was so young, we did not have any clear indicators of what her intellectual abilities were. Adele was proving to be very bright and as many people like to say “as quick as a whip.” It was reason to celebrate and one of several factors that led our therapist to remind us about another option for communication: Cued Speech. From "Choices in Deafness" and other sources, we learned that Cued Speech is a method for visually communicating English using the phonemes of the language, not symbols for the words like sign language. In simple terms, it is a combination of lip-reading and about 40 hand signals that match the consonants and vowel sounds of English. In addition to Adele’s cognitive strengths, several events led to our consideration of Cued Speech.

We realized that even though we were very devoted to learning sign language and were gaining vocabulary rapidly, we knew there was a strong possibility that Adele’s communication needs could outpace us. We did the math and the number of words we needed to learn per day was somewhat overwhelming. If it was overwhelming to us as parents, what could we expect from everyone else in our lives? Without a strong circle of signing friends, including our own adult friends and family, it would be difficult for us to learn sign language beyond a third-grade level (about 5,000 words) and it would never be our natural language (as it is for deaf parents of deaf children). It seemed more common than not, that at some point, parents were not able to say everything they wanted to say to their children because of vocabulary limitations. That was very concerning to us, especially since there was a chance that the signing deaf community would not embrace her special needs.

Of more immediate concern was that I was finding myself unprepared to talk to Adele about what she was interested in on a daily basis. On a trip to the zoo, I prepared thoroughly and thought I knew the sign for every animal she could possibly want to see: monkeys, lions, tigers, elephants, zebras, rhinos, parrots, giraffes, turtles, bears, seals, etc. But when she stopped to watch the flamingos and the ostriches, I did not know those signs and, even worse, could not find them in the sign language book we had in our bag. We had lost that teachable moment forever and there would be more to come.

From our initial feelings on sign language, we still had a strong appreciation for the literacy-building opportunities in Signing Exact English. Cued Speech offered even more advantages for learning to read and eventually write. The phonemic awareness from Cued Speech allows a child to learn to read the same way a hearing child can learn. Through the hand cues, they have a visual reference for the sounds in a word and can “sound it out” allowing them the same opportunities as a hearing child. If Adele is like most kids, we foresee a lot of emailing and texting in her future and we would like her writing to reflect strong language skills and not be limited just because she cannot hear.

As we learned about Cued Speech from the book and other writings and research, we were intrigued but not without concerns. We read as much as we could and found one invaluable resource in another parent of a child with CHARGE Syndrome. Their daughter was 30 years old, doing very well, and had begun using Cued Speech in preschool. We were impressed enough to give Cued Speech a try. However, our biggest concern was (and continues to be) how well Adele would be able to express language with Cued Speech. Because part of the visual system depends on the mouth shape of a phoneme, Adele’s facial palsy and oral motor weakness posed a problem. It was an unknown risk that we talked about but felt that even if her expressive language fell into the “worst case” scenario, there would be ways to overcome it. The pros seemed to outweigh the cons and we moved forward.

With help from our HEAR Center therapist and a DVD tutorial, my husband and I learned the hand shapes and placements for Cued Speech in just a few days. Within a short time, we could put it all together to say anything we wanted to Adele without having to look it up. Our speaking was very slow at first, but it was very liberating to be able to say anything without first consulting a book. It also didn’t take long to notice that because Cued Speech forces your focus to the mouth area, Adele was paying more attention to our voices and using the hearing that she does have from her cochlear implant. We know that she can hear some common routine words without cues and her lip-reading skills are also quite good. Given her challenges, these skills can only add to her competence long-term in the hearing world.

Thankfully, Adele’s preschool embraced our decisions and we have been supported by them as well as the HEAR Center. In the two years we have been cueing, Adele’s receptive language has flourished and she is still proving how quickly she can learn. Literacy continues to be a driving force and reading children’s books has been one of the best ways to advance her vocabulary and increase the speed of our cueing. To her delight, both Adele’s grandmothers have learned to cue, as have her aunt and several therapists. We have taken her to 2 summer camps for Cued Speech and met families from all over the country who cue. We have even met a few more families with children with CHARGE Syndrome who are cueing. Even though our Cued Speech network is small, it is growing!

It is worth noting that most Cued Speech advocates recommend that a child learn ASL at some point, and we agree. The social aspects can be very rewarding and we hope that will be the case for Adele. Even though we, her parents, will probably never be as fluent as we would like in ASL, she can learn in other settings when she is a little older.

Though most of our efforts are focused on Cued Speech, signing still has a place in our home. Adele uses the initial signs she learned as a base of expressive language, as well as cues and gestures. Her expressive language has not progressed as rapidly as her receptive and that gap has been widening rather than narrowing. This is not all bad news, though, because her receptive language is amazing; we just need to help her match it with expressive language. Once again, we began looking for another piece to our ever-growing communication puzzle.

We posed our situation to as many professionals as we could over a period of several months. It was challenging to find people who felt they had adequate experience with a child like to Adele to make a recommendation, but we did get feedback from New York, North Carolina, Maryland, Michigan, and, of course, from our home team in Birmingham. The evaluations were not formal, but the recommendations were unanimous for incorporating an additional approach: Augmentative Communication. At Cued Speech camp, one of the therapists recommended a book with an unusual title, Schuyler’s Monster. It is a father’s story about his voiceless (but hearing) daughter’s journey to communication. While I do not agree with a lot of the author’s feelings, their story related to ours in many ways. They were using an Augmentative Communication device and it seemed, more than not, that this could be a good option for us.

It took almost a year before we were convinced to try Augmentative Communication. We did not want to overwhelm Adele, ourselves, our family, our therapists, our school system, etc. But over the summer we have gone through the evaluation process (and insurance process for coverage) and with the help of Easter Seals we are thrilled to have received our own device this very week. It’s official name is “Vantage Lite” from Prentke Romich Company, but we affectionately call it “Adele’s Pink Talker.” If you are not familiar with this type of device, it uses symbol icons to offer many choices of language, up to 5,000 words, and it speaks them for the user. Another benefit of the device is that it spells the words and sentences on the screen, furthering her opportunities to build literacy.

Because Adele cannot necessarily discriminate the device’s voice output, we are cueing everything to her as she learns what words the icons represent. We hope it all comes together smoothly but know it will take time. In the few days she has had her “talker,” she is already surprising us with what she wants to say.

We are not sure what Adele’s communication will look like in the future, whether it will be Cued Speech, output from her “talker,” ASL, or quite possibly from her own mouth. In the five years that we have been working on her hearing and speech, we have also been working on her oral motor skills for eating, to the schedule of up to three therapy sessions a week. Over the summer, Adele has surprised us all again by learning to eat small meals by mouth and drink enough nutrition through a straw to skip a few of her tube feedings. It almost feels like a miracle, but we will save that for another story. In the meantime, we remain optimistic that Adele’s head is filling with language and that someday she will be able to tell us everything that is on her very special mind. Her little hearing sister Margo (two and a half) has no problems communicating with her big sister. She's even picked up a few cues as well by watching us.

Sometimes it's the challenges that teach us appreciation. What seems small to some, can be great accomplishments to many families with children who have special needs.

Written by Julie Brandrup, mom to Adele (CHARGE Syndrome) and Margo

Bama's Bright Light

2009-08-05T08:34:00.012-05:00

Rachel from "Signing Time" with Julie and Adele

This month, Bama Ears is shining its bright light on Julie Brandrup, mom to Adele and Margo. This busy mom just returned from Chicago where the CHARGE conference was held this year. If she and daughter Adele look familiar, it may be because they have been in many magazines and on TV as well, featured in Blue Cross/Blue Shield advertisements. Before she had Adele, Julie actually worked in advertising and branding. She says that her experience in finding the positive angles of each product and enhancing them has really come in handy since she's become a mother to a special needs child.

Julie has a positive outlook on everything, right down to her own health. She's had two back surgeries since having Adele (one while pregnant with her now 2-1/2-year-old). She notes that despite all of that, she rediscovered her love for swimming, which became helpful for her postsurgery back. She was also forced to rely on some great baby-sitters since she couldn't even lift anything for six weeks after her surgeries. Those sitters also come in handy when she and her husband have their date night, which has always remained somewhere on their busy calendars. Julie and her husband Jay actually share more than this lovely family – they also share the same birthday (Julie is older by two hours). They can often be found at the annual "Rhinestones and Wranglers" charity event held by The Charity League of Birmingham, or other charity events for UCP and the Bell Center . Jay is actually on the Fundraising Campaign Committee for the Bell Center and a UCP board member. Julie says her husband and family have been unbelievably supportive through everything. She also says,

"I am also thankful to God, who undoubtedly provides the strength I need every day to rise to the challenges of having a child with special needs; without Him we would be a big mess."

We are proud to be shining Bama's Bright Light on Mrs. Julie Brandrup. Next week, read more about Adele's experiences and how she is learning to communicate and how her little sister Margo is also picking up language in a variety of forms as well! Julie helps many families each time she shares Adele's background, and we are pleased to bring you more in next week's article.

Growing up deaf

2009-07-12T18:17:00.014-05:00

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.

Chronicles of an Extreme ENT III

2009-07-05T17:05:00.006-05:00

Please feel free to read the first two stories about Dr. Audie Woolley before you proceed. To read the first edition click here. To read the second edition click here.

For our final installment of Extreme ENT, you’re going to find out where you may find this doctor when he’s not improving the lives of children. But first, we want to tell you where you won’t find him. You won’t find this ENT getting his nails done or going out for a spray tan, he's too busy clubbing...

…at many of the top 100 golf courses in the world that is! He’s won several events in the last decade and has played the game since he was ten years old. He’s even played in Scotland and Ireland twice. He’s never hit a hole in one despite all his efforts but he’ll keep trying I'm sure.

You won’t see the doctor in a pair of plaid pants either, but you may be surprised that you could find him in a pair of camouflaged ones. He grew up an avid deer hunter and though he doesn’t get to go as often now, you could possibly find him in a field somewhere during turkey season, but you will have to look really close because he does have several pieces of camo in his wardrobe.

You won’t find Dr. Audie Woolley getting his hair and make-up done either…or would you?

If he’s at the Indian Princess Campout with his daughter Emme, you might actually find just that. She painted him up just right for their campout event where he claims all of the dad’s were painted by their daughters.

You won’t find him spending his vacations learning a new trade such as sewing or baking, he has to be outdoors! Every year, he takes his three boys with him on a wild and dangerous, energy packed and fun filled scenic adventure. This year they went on a 100-mile mountain biking trip in Utah. But they’ve traveled to Yellowstone, Ocoee River, the Grand Canyon…if it’s adventurous, they’ve either already done it, or have it on their “to do” list. Next year, they take on Peru.

Whether he’s getting his face painted by his daughter, or standing on the edge of a cliff with his sons, this doctor is quite extreme at work and at play. Give this man a Dave Matthew’s Band song and he can stand for hours in the operating room in attempt to help a child hear. Give him a good pair of hiking shoes and he’ll climb up to the highest cliff. For this father of four, it’s got to be extreme!

Fun Day at the Park

2009-07-04T06:43:00.003-05:00

Mark your calendars if you are a Children's HEAR Center family for September 12, 2009. We are scheduled to have a fun day at Homewood Park and we hope to see you there. More details to come later, and we thank the mom responsible for organizing this event for us all to meet and have a family fun day. Thank You! Bama Ears will be there taking lots of pictures...

a Southern Girl........

2009-06-29T16:32:00.013-05:00

....well, not exactly. This week Bama Ears was able to peek into the life of Assistant Director and Pediatric Cochlear Implant Audiologist at the Children's HEAR Center, Mandy Mahalak. Mandy may not be an Alabama native but she sure knew how to make herself feel right at home here in Bama. Since moving to Alabama years ago, this volleyball/tennis playing gal has not only been seen eating a fried green tomato but fried okra as well. And now that she's eating for two (again!) you may see her sampling more of what Alabama cuisine has to offer.

Mandy doesn't quite have the Southern accent down yet but we are working with her on that so hopefully by the time baby number #2 gets here (it's a boy), she'll be speaking right along with her Southern peers. You may find us in the booth working on Spondee words such as "hot dawg". Her receptive skills are fantastic and her speech is bound to catch up sooner or later. She's very proud that she's adopted the word y'all already into her vocabulary. We gave Mandy a Southern Vocabulary test just to see areas that may show weakness and here are the results. Right away Mandy knew the words doohickey saying it was the same as thingamabob and that dad burn it means darn it. However, she did have problems with the word orta, which we all know means should, and the term walla go obviously means a while ago. I did go over the results with her and since we are not bound by HIPPA privacy treaties here at Bama Ears, she does understand the results would be displayed.

We asked Mandy why she chose pediatric audiology and and she claims she loves to work with children. She likes the challenge of working with kids and says it's never a dull a moment when you work in pediatrics. We asked if she had experience working with children with multiple needs as well since almost half of all kids with hearing loss experience other issues also.

"I am fortunate enough to be able to work with children with many special needs. Children with short attention spans are not uncommon in our patient base. We also work with many patients with different syndromes, vision impairments, cerebral palsy, and autism to name a few. This is part of the challenge that keeps me going on a day to day basis. You really have to be patient and creative to get the information and participation you need from any child, then add on an additional impairment other than deafness and the challenges becomes greater. I love my job, and I am blessed that I have the opportunity to make a difference in all types of children's' lives."

We thank Mandy for letting us peek inside her life a bit. When not at the HEAR Center helping our kids hear better, she's at home with Brian, Lucy, and their two dogs watching Jon and Kate Plus 8 when she's not rocking out to Guitar Hero. This cool mom of soon to be four (if you count her dogs...and she does!) tries to stay current by keeping up with the latest top 10 songs on the radio but she really prefers listening to Billy Joel, Jimmy Buffet, any song from the 80's and Veggietales (a true mom). This audiologist is determined to prove that you don't have to be Bama born to be a Southern girl.

Bama's Bright Light

2009-06-25T05:49:00.010-05:00

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.

Under the Microscope

2009-06-20T06:12:00.008-05:00

When you find out your child has hearing loss, often times you are offered genetic counseling/testing. Why would parents want to have their genes or their child's genes put under the microscope? Should we just accept that “it is what it is” or “it was just meant to be?” It is a very personal choice, and we wanted to give you our thoughts on why we chose genetic testing. There are several benefits of genetic counseling:

1. As children get older, they will have questions such as “Why me?” or “Why don’t my ears work?” or a number of other questions that you need to be able to answer.
2. Also, when children become adults and want a family of their own, is there any likelihood that they too will have deaf children? Or was their hearing loss an isolated case?

3. Having the counseling can also help you answer questions such as, "What is our risk to have another child with hearing loss?" "Should we have more children? Do we want to have more children?” Some people really struggle with these questions that can be an emotional concern as well as a financial and a major health concern.

4. Health! Up to 40 percent of children with hearing loss have other issues, which is almost half of the kids with hearing loss (according to www.raisingdeafkids.org/speical)! Sometimes children may have an underlying syndrome, and hearing loss is secondary to that syndrome. Many kids with syndromes may appear to be fine to the untrained eye, but with a full exam from a genetics specialist, it may be determined that the child has syndromic hearing loss. Finding this out ahead of time can really be beneficial. A child with a syndrome may need other testing to determine if there are other complications or concerns that need to be addressed. Sometimes as a child with a syndrome ages, other things develop that can cause concern that could possibly be addressed earlier. The child could develop cognitive delays, growth abnormalities or visual impairments, ADHD, or even more serious developments such as kidney or heart or spinal problems. Having these issues addressed in the beginning can help you decide which follow-up care or continuing care to pursue for your child. It helps you be on the lookout for certain issues to develop, and if they do, you’ll know whom to contact.

5. Relief. Genetic counselors can also test for nonsyndromic hearing loss. For example, a mutation in the connexin 26 gene (called GJB2) causes only hearing loss, so if your child has that gene mutation and nothing else, you’re pretty well assured that hearing loss is all you’re dealing with. Mutations in other genes can be associated with other medical problems.

We wanted to talk more with Dr. Nathaniel Robin, Professor of Genetics and Pediatrics at UAB, on the subject of genetics and here’s what he says...

"As you mentioned, there are many benefits to a visit to the geneticist. But because very few people even know what a geneticist is, they are often nervous about coming to see us. A visit to the geneticist is very similar to any other doctor visit in some ways, but very different in others. For example, we spend a lot of time getting background information on your child as well as your family. Then, when I examine your child I look for very subtle things, like facial characteristics. Are the ears and nose normal in appearance? Are there unusual birthmarks, or fingerprint patterns? This is mostly done just by looking and observing, very little poking. If there is no other unusual findings, we often recommend testing for isolated hearing loss genes. However, if there are other findings we discuss what they mean, and what testing if any should be carried out. Genetic testing typically involves nothing more invasive than a simple blood draw.
All in all, most people find these visits helpful, as many questions are answered, or at least addressed.
A visit can get very emotional, and parents will often become upset because we are discussing potential health risks for their child. We always follow up each visit with a comprehensive and detailed note, as well as additional reading material as appropriate. Another often unspoken concern is if a genetic evaluation and testing is covered by insurance. The answer is almost always yes, but if that is a concern we can check before your visit.
To make an appointment with UAB's Genetic Clinic call 205-934-9528."

So you can see, at least in our opinions, a visit to the genetics office can be quite beneficial. Talk to your audiologist or ENT about genetic testing if you are interested and they will surely point you in the right direction.

Miss Kate Morris

2009-06-16T06:11:00.013-05:00

Kate is a precious 20-month-old who loves chasing after big sister Maggie, rocking her baby dolls, dancing to music, playing outside and getting into whatever she is supposed to stay out of. At first glance she seems just like any other 1-year-old. She loves to run, climb and blow bubbles. What makes Kate special? Many things actually, but among them are her "ears." Kate received bilateral cochlear implants when she was 10 months old at Children's Hospital in Birmingham. The surgery was done by Dr. Audie Woolley.

Kate is profoundly deaf and has sensorineural hearing loss in both ears, and the cause unknown. She is the only child with hearing loss in our family. Kate failed her newborn screening test and was referred from the hospital for a followup with our local ENT. She had an ABR at 2 months at our local ENT’s office, and we were then referred to Dr. Woolley at Pediatric ENT and Associates. In December 2007, at 3 months of age, she had an additional non-sedated ABR that confirmed the hearing loss. Kate received her first pair of hearing aids at 3 months from the HEAR Center and wore them almost up until her surgery in August 2008. Kate receives Auditory-Verbal Therapy (AVT) at the HEAR Center twice a month.

Kate has made amazing progress. After testing a few weeks back, I was told that Kate’s scores match those of her peers. Her language skills have caught up to her chronological age. Her speech has blossomed in the last two months. She now has over 50 words and is putting them together to make short phrases.
I will never forget the look on her face at her activation. It still takes my breath away to see her react to the simple sounds that I have taken for granted like a dog barking, the birds singing and giggling of sisters. One of my greatest joys is watching her dance to music. She also loves to point up at the airplanes flying overhead.

Here she is singing with her older sister in the car.

Kate is a gift to me and all those she meets.

Written by Kate's mom Ashley

Chronicles of an Extreme ENT II

2009-06-11T17:26:00.013-05:00

If you haven’t read the first chapter please click HERE and read that article first.

Continuing our series on one of Alabama’s most beloved ENTs, Dr. Audie Woolley, we promised to give reason for the name, Extreme ENT….
We start with the question “How does one become an Extreme ENT?”

Do you think it’s his medical training? After all, he did learn to improve the health and lives of children. Not everyone can do that. He received his residency in Otolaryngology-Head and Neck surgery at Washington University in St. Louis and then did a pediatric fellowship with concentration in ear surgery and cochlear implants. I mean he is Clinical Associate Professor of Otolaryngology, Surgery and Pediatrics along with several other medical related titles he holds. Hmmm…

Cholesteatoma Surgery, tympanoplasties, ossiculoplasties, he can say them and perform these surgical procedures without expecting the parents to spell them, say them or even know what they are. Yet he can explain with patience and regular vocabulary each medical term so that the parents are confident and trust his skills even if he still looks as if he’s fresh out of med school…(he’s not by the way!)

Nope!! We parents sort of expect that from our doctors; we all want the best, seek the best and hope we have picked the best. We are certainly relieved when the surgeon who is about to attempt to help a deaf child hear, or maybe help a child breathe easier with airway reconstruction, or even placing simple ear tubes, has earned scholarly awards (oh yeah, he entered college on an academic scholarship and graduated Magna Cum Laude, we’re talking BRAIN POWER here)….

He’s earned this title of Extreme ENT only partially for those reasons; it actually has a little to do with this…

…his gorgeous family, with wife Ally holding everyone and everything together. They were college sweethearts and eventually married and had three sons and a daughter ranging in ages from 8-21. He says that she’s a great mom and an awesome wife. He notes she has always supported him both professionally and recreationally…and what he does recreationally has officially earned him the title of Extreme ENT. Truth be known, the whole clan is a little extreme with Ally being queen of the slopes and Emme (8) the little princess is taking horse riding lessons. As for Dr. Woolley and their three sons…well, you’ll have to stay tuned to find out what all they do! Here’s a hint: Adventure and danger…they love it!

Sometimes it helps learning more about your doctor to have that trust and understand that he/she too may have a family…children. Maybe the doctor realizes being a parent himself/herself, how difficult some decisions can be. Stay tuned to learn more, you just might have more in common with this doctor than you think! We’ll find out next about those extreme adventures and what he does for recreation, we’ve already ruled out line dancing…but some things just might surprise you, when Extreme ENT continues…

Tiny Dancer

2009-06-08T09:07:00.008-05:00

Riley and her six Little Mermaid classmates pranced onto the stage in front of about 2,000 at the VBC and did their routine to "Kiss the Girl" like it was no big deal. She knew the dance better than her teacher, who told me as much after the show. She didn't miss a beat or a step ... not bad for a deaf girl! Those cochlear implants really work.

Here are a couple of pics, and a video from the dress rehearsal (complete with curlers).

The Genes We Wear....

2009-05-31T16:57:00.025-05:00

“What does it sound like to take a bath?” This is just one of many questions I’ve been asked since becoming a parent to deaf children. I had to frantically search my mental thesaurus to describe to my children how the water sounds to me but feels to them. By day, they wear cochlear implants, electronic devices where one part is surgically implanted under the skin near the ear. A second part, the external processor, is removable by the patient during activities such as swimming, bathing and sleeping. Once removed, my children are in a world of silence.

My son Gage, was born with Goldenhar Syndrome, explained by Dr. Nathaniel Robin, Professor of Genetics and Pediatrics at UAB. “This is a rare craniofacial disorder in which affected children have underdevelopment of the face and ears, with one side being more severely affected than the other. Hearing is often affected, and other birth defects are common. These include abnormalities of the eye, spine, heart and kidneys. While the physical appearance may be striking, the vast majority of people with Goldenhar have normal intelligence. This is why early identification and correction of any hearing deficit is so important.”

Among many other abnormalities noted at birth, he failed his newborn hearing screening ... he was profoundly deaf. Little did I know that his little sister Brooklyn, born two and a half years later, would follow his path to silence. Passing her newborn hearing screening and with no apparent syndrome, you can imagine my surprise when I found out she couldn’t hear well at nine months of age. Her brother had just received a cochlear implant, so shouldn’t I have seen the warning signs?

Unlike her profoundly deaf brother, she had some hearing, so if I raised my voice or moved in closer, she could hear me. Having one deaf child already, this was “our normal.” Her progressive hearing loss soon led her to qualify for cochlear implants also. Knowing that Gage had a syndrome, a reason for his deafness, we decided to have genetic testing on the whole family since she may question her hearing loss later in life or when she decided to have children of her own. No genetic links between the two were found as reason for their hearing loss.

As Dr. Robin further explains, “Over half of all hearing loss in children is caused by genetic factors. In most cases, these genetic anomalies cause no other abnormalities, and are therefore termed ‘isolated.’ In other cases there are associated problems, and the hearing loss is called ‘syndromic.’ But the genetic cause is not known for all syndromes. Goldenhar is one such example. While we believe it is low, we cannot with certainty state what the likelihood is that Gage or his siblings will have a hearing-impaired child.”

Ironically, it is possible for deaf children to become good listeners. According to Natalie Baldwin, an Auditory-Verbal Therapist/Speech-Language Pathologist at The Children’s HEAR Center, “It is my job to educate the family how to stimulate speech, language and auditory development in their child. Through weekly sessions, we target vocabulary, language, listening and speech tasks that will help the child develop just like their typically hearing peers.” Natalie warns that even a minimal hearing loss can impact a child’s speech and language development. If you have concerns regarding your child’s hearing, she suggests you ask your pediatrician for a referral to a pediatric audiologist.

It’s common practice at my house to narrate daily activities. In fact, this part of auditory-verbal therapy could benefit almost all children, with or without hearing loss, since its focus is language input. When it’s time to cook dinner, I let them help, exposing them to as much language as possible. Also, I may ask them retell the list of ingredients in a dish to Dad during a meal, giving them a chance to verbalize and improve their memory skills. So try to include the children in your daily activities, they might become better listeners!

Written by Val, mom to Gage and Brook

with special thanks to Dr. Robin and Natalie Baldwin for their contributions
http://www.deafkidscanhear.blogspot.com/

Little Lilly

2009-05-30T08:12:00.017-05:00

Lilly is 19 months old with bilateral cochlear implants, or “magic ears” as I tell my young curious students. We couldn’t be happier that Lilly has finally entered the hearing world, although the road to get here was not an easy one.

Lilly failed both hearing screenings in the hospital when she was born, and we were told not to be concerned. However with years of experience with infants I knew this was no ”vernix.” We were able to see the audiology team at Children’s ENT two weeks later and were told before she was 3 weeks old that Lilly had a profound sensorineural hearing loss. At 7 weeks old, Lilly received hearing aids and so began the challenge of keeping those little suckers on her head and ear molds in her ears!

And then it all sped up; it seems like a blur now. AIDB (Alabama Institute for the Deaf and Blind) assigned us a case manager who did an initial screening which confirmed other delays. As a result, she assigned to us a physical therapist to go along with the speech therapist and, of course, the audiology team we have come to know and love at the HEAR Center. We saw a genetics specialist at UAB, a neurologist, an ophthalmologist and, of course, Dr. Woolley (a.k.a. the Guru, big dog, head cheese, our hero ...) Lilly even began supplemental therapy with the Bell Center to try to close the gap in her gross motor delays. CT, MRI, Muscle Biopsy – more bad news. We felt like we were drowning – sound familiar?!? It felt as if the not knowing why and not knowing what to do were the worst.

Causes were sought out; CMV was the culprit for a while so we went to a CMV clinic. Results were inconclusive; she had CMV, but not congenital CMV. After a muscle biopsy, it was determined that it was Mitochondrial Disease that caused abnormal white matter in the brain, low birth weight (4.15 lbs) and congenital hearing loss.

But then things got better, as they always do. Lilly continued to make progress with her motor skills, just at her own pace. Pilot caps kept the hearing aids on! She made it into the 10th percentile for weight on the growth chart! (woo-hoo!) And the decision for cochlear implants was made (a double-edged sword but finally a decision!)

Lilly’s first cochlear implant surgery was the day after her 1st birthday. Recovery was hard, but after the activation, we had the best Christmas of our lives! (see video below)

There was a battle for the insurance company to approve the second surgery, but thanks to Papa Jack, it was able to take place on a very lucky Friday the 13th. It’s been almost 2 months since that activation and her language development is astounding!

Lilly identifies animals and their sounds, practices the Ling 6, loves to read books (identifying even non "Learning to Listen" items), she crows like a rooster and growls like an Auburn tiger! She can say more please, bubbles, Mama, Daddy, Nana, Katie, Pop, doggie, eat, hot, hat, up, ball and something new every week! Oh, and Lilly LOVES to sing!

Our journey is not over, but we now have a stable vehicle to travel in! We are still waiting for more results of the biopsy that determined the abnormal mitochondria, and we will then visit a specialist in Atlanta. Although Lilly wears custom splints, she still prefers to “cruise” rather than walk. And the new tubes Dr. Woolley gave us will hopefully ward off any other ear infections.

Wow! All this happened in less than 2 years. It sounds crazy when I type it all out. The tears of sadness and heartache were definitely worth the tears of joy and amazement. I look forward to meeting you in the waiting rooms!

Written by Lisa, Lilly's mom

Chronicles of an Extreme ENT

2009-05-25T17:27:00.005-05:00

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….

Chloe's Story

2009-05-17T05:32:00.026-05:00

My name is Nicole. My niece Chloe is almost 18 months old and has bilateral Cochlear implants. She was diagnosed at 5 1/2 months old with severe-profound sensorineural hearing loss that was hereditary. Chloe initially failed her newborn hearing screening, but later passed it at her first well-child check-up. At almost 4 months old her parents, Paul (my brother) and Candace, became concerned about the possibility of hearing loss, when Chloe did not wake up to the sound of a skill saw, which was running in the next room. Later that week at her 4 month check-up, these concerns were expressed to her pediatrician and a hearing test was performed. Chloe did not pass the screening and was referred to Children's Hospital where her hearing was further evaluated, again with the same results. On April 19, 2008, Chloe had tubes placed and ABR testing which revealed "at least severe hearing loss." About a month later, Chloe received her hearing aids, and again the news was not good. She had a delayed reaction to extremely loud sounds, which meant being aided by hearing aids alone would not allow her enough access to sounds to develop speech. She was diagnosed with a profound hearing loss.

Chloe at 8 months of age, we had to get creative and keep her busy hands away from those hearing aids

With the diagnosis of profound hearing loss, our journey to cochlear implants began. Chloe was evaluated by the HEAR Center and she was soon a candidate for bilateral implants. Her surgery date was set for November 14, however in mid-October we received the news that her insurance company had denied payment for her second implant. Their reason: bilateral implants are not "medically necessary." That answer was not acceptable. The surgery date was rescheduled for December 8 and then December 15 to allow time to resubmit the claim. Meetings were attended, calls were made, but we were getting no where as the claim was again denied. FINALLY on December 10, after a trip to Montgomery to plead Chloe's case, just 5 days before her surgery date, the claim was not only approved for Chloe, but for any other child needing bilateral implants with this insurance company. Coverage of bilateral cochlear implants would now be their policy.

December 15, 2008 (just after her first birthday) The big day FINALLY arrived. After 6 hours in the OR, we received the GREATEST news EVER....

Chloe's surgery was a success and responses had been detected from electrodes in each ear. CHLOE WOULD HEAR!!!
Chloe the following morning after her bilateral surgery

Chloe's Activation Videos

One Month Later...

I was completely amazed at her progress in just one short month. Chloe started babbling and repeating sounds. This child was completely silent just one month before these videos were shot.

Now, at almost 5 months post-activation, Chloe continues to learn new sounds every week. She goes to AVT (auditory verbal therapy) weekly and mapping sessions (audiology) about once every 3 weeks. Her vocabulary includes: more, mouth, mama, bye, hi, "g" sounds, and "y" sounds. She is imitating more and more sounds every day. Check my personal blog for more updates on Chloe's progress: http://www.kaylynandluke.blogspot.com/

Written by Aunt Nicole

Ariana's Story

2009-05-11T20:20:00.024-05:00

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

2009-05-08T14:53:00.013-05:00

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

2009-05-06T20:42:00.006-05:00

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