12/21/09

Children's HEAR Center Charity Concert

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.

11/9/09

November '09 Family Get-Together


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.

10/20/09

HEAR Center Family Fun at the Park

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

9/22/09

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.

9/19/09

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!!!

9/15/09

Meet a local service coordinator for AIDB

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

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


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

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

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

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


9/3/09

CRS-Children's Rehab Services of Alabama

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

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


What services does CRS offer?

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

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

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

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

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

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

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


For more information, visit the CRS website

8/31/09

AEI-Summer Institute in AVT

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."

8/28/09

Lullabies on the Links

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

8/8/09

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

8/5/09

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.






7/12/09

Growing up deaf

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


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

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



7/5/09

Chronicles of an Extreme ENT III

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!





7/4/09

Fun Day at the Park

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...

6/29/09

a Southern Girl........

....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.

6/25/09

Bama's Bright Light


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





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


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



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


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


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

6/20/09

Under the Microscope


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.

6/16/09

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.
videoI 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.

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




Written by Kate's mom Ashley

6/11/09

Chronicles of an Extreme ENT II



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…

6/8/09

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).
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