Kate's Second Hearing Birthday Celebration

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

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)

(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)

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

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

Allie's Ears

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

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

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

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

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

Written by Natalie, Allie's mom

A True Champion-John's Story

John's teacher Lisa, John, therapist Courtney

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

Mom Jennifer writes:

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

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

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

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

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

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

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

Kate's First HEARING Birthday

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

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

Happy First HEARING Birthday Kate!!!

Taking CHARGE

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 therapy. 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

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.

Miss Kate Morris

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

Tiny Dancer

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).

Chloe's Story

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

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

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

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

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

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

http://rainfallsdwn.blogspot.com/

Sound Check Mama: It's Riley

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

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

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

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

Cochlear Kids

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

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

Written by mom Val Blakely