Thursday, August 28, 2008

AVT-Speech Banana

Sophie has been doing exceptionally well in her therapy. We meet with Shelley once a week for one hour at a time. Shelley says that Sophie is getting great sound with her hearing aids. Sophie loves her learning to listen sounds. She is suprising me every minute. She brings me her little books all the time because she loves looking at the pictures and making the sounds that go with each one. I can't imagine once she gets her CI. I am almost second guessing myself whether or not she needs one. Although, I know she is still not getting ALL she needs for language development but she is doing so good. Shelley and everyone else reinforces that the CI will bring her to a level to where she hears EVERYTHING. And will not miss anything. Her aids only bring her to 35 dbls and then it drops off drastically at around 1000-2000. Unaided she is around the 90-100 dbls. Those hearing aids must be pretty powerful!!!! Gosh, what wonderful technology there is out there!!!

Wednesday, August 27, 2008

Stay Away Hurricane Gustav!!!!

As of today Hurricane Gustav is headed straight for New Orleans and predicted to hit next Monday, Labor Day. My daughters CI surgery is Sept 11 in New Orleans. If anything like Katrina, New Orleans could be out of commission for a while after landfall. This would have to be the second cancelled surgery for Sophie. I know I shouldn't think that far ahead but I can't help it. I pray that the hurricane just disappears. I don't wish it to go anywhere else for others to have to experience such dreadful weather. I just hope those levee's hold up this time if it does hit near New Olreans. If they do then I am sure her surgery will stay as planned.

Monday, August 25, 2008

Cochlear Implant Approval!!! HOORAY!!!

We have received approval from our insurance (UHC) for Sophie's CI. HOW WONDERFUL IS THAT!!! We were originally scheduled for surgery on Aug. 5th but things didn't work out as planned and things had to be moved. I am so nervous about the surgery. Although I know she is going to be fine but everything under the sun runs through my mind and I get all worked up. Surgery is going to be at Ochsner in New Orleans, by Dr. Timothy Molony. He is a wonderful surgeon and I know he and his staff will take great care of her. Now we will be counting down the days!!!!!

Monday, August 18, 2008

Emotional Ups and Downs

As a mother I try to stay positive about most issues that arise. But sometimes they get the best of me and I end up angry and agitated. Referring back to the diagnosis of my children having hearing problems I was VERY upset, especially finding out about my son, Price. I was sad for him. I was sad knowing that he would have to do double the work to get where he needs to go, example school. I was so worried that children would make fun of him or that he was going to have a speech problem and everyone would know he had a hearing problem. All of these feelings rushed over me in seconds of finding out it was HOH. When I found out about Sophie, even though hers was worse of a diagnosis, I was not upset that much. I was almost happy to know that they, Sophie and Price, would have someone very close to them to relate to and they could lean on each other for support. Yes, I was very sad that my beautiful daughter could not hear me telling her that I LOVED HER the 1 million times I probably said it to her but seeing the smile on her face every day I know she felt it. When they got their hearing aids, it was one of the happiest days for me because I knew they were finally getting what they needed. Especially Sophie! She was finally getting sound into those little tiny ears! She was very scared at first. I think the sound was so new to her that it frightened her a little. Each day we had to spend 10-15 min. getting Sophie adjusted to the sound. But once she settled into the sound she loved it. Knowing that there is so much out there for my children makes this so much easier for a parent. Everyone from our current audiologists to the cochlear implant surgeon has been so wonderful to us. But one person in particular has been a blessing, her name is Donna Embree. She works for the LA School for the Deaf and is apart of the Parent Pupil Program. She has given me and my family so much help. Any questions I have she has been the 1st person I call. I thank Jesus that there are people out there that care so much to give their time to other individuals to help them in a time of need. If it wasn't for the wonderful people I have met in the past 3 months I am sure I would not have the same feelings as I do now. But the day I found out about their hearing problems was the first day I began researching. I don't think one day has past that I didn't look up something pertaining to hearing loss. But you know what, I have no time to waist. My children fell through the cracks somehow for early diagnosis, so it is my job as a parent to get them where they need to be. But let me tell you, I love it! My mission in life is my family! And doing all I can to better their wellbeing is my number one mission. But one thing I can say, is yes God blessed my children with an impairment but it surely wasn't one that He meant to keep them down. My children are very outgoing! It does not slow them down at all. Our God is an awesome God! I thank Him every day for my children and all that comes with them.

Friday, August 15, 2008

Untreated Hearing Loss in Children has Dire Consequences by Paula Rosenthal, J.D.

August 04, 2008
Untreated Hearing Loss in Children has Dire Consequences
Posted in: Hearing Loss Research, Legislation, kids with hearing loss, unilateral hearing loss
Washington, DC, August 3, 2008 – Too many children with hearing loss aren't getting adequate help and are being put at risk for social, emotional, behavioral, and learning difficulties, the Better Hearing Institute warned today, citing a national study exploring the unforeseen consequences of untreated hearing loss in America's children. The warning comes just as educators and parents are preparing for the start of school, and as Democratic and Republican policymakers are preparing their party platforms for the November elections.
In a recent national study Are 1 Million Dependents with Hearing Loss in America Being Left Behind? BHI found that America's children are paying a high price for the pitfalls in how parents, educators, the healthcare community, and policymakers are addressing hearing loss in our youth.
"Children need to be able to hear, not just in the classroom, but also because hearing affects language competence, cognitive development, social and emotional well-being, and academic achievement," said Sergei Kochkin, Ph.D., executive director of BHI. "Children who cannot hear well-that is, when their hearing loss is untreated or under-treated-could face a life of underperformance and broken dreams."
The scientific literature is clear that untreated hearing loss affects nearly all dimensions of the human experience. And the pediatric literature demonstrates that even children with "minimal" hearing loss are at risk academically compared to their normal hearing peers.
"Based on our findings, I am concerned that a sizeable population of young people in America is being left behind because they do not fit existing paradigms of hearing disability," said otolaryngologist Dr. William Luxford of the House Ear Clinic, a BHI Board member and co-author of the study. "We need a fundamental re-examination of the current hearing health policies and protocols influencing America's children with hearing loss."
According to Kochkin, also a study co-author, the findings indicate that too many educators, pediatricians, and other healthcare providers underestimate the impact of mild or unilateral (affecting one ear) hearing loss. As a result, hundreds of thousands of children are left vulnerable to a wide range of social, emotional, behavioral, and academic problems.
A large part of the problem is that many parents today either don't recognize their child's hearing problem, minimize it, or have been given misinformation regarding the ability to treat the child's hearing loss. In fact, at least 50 percent of parents don't go back for detailed testing when their infant fails an initial hearing screening.
According to Kochkin, some of the most alarming findings from the study include the following:
Only 12 percent of children under the age of 18 with hearing loss use hearing aids; yet an estimated 1.5 million youth (including adult dependents) under the age of 21 have hearing loss that may be improved with amplification.
The study found no evidence of the use of any form of hearing assistance in the classroom (e.g. FM systems, hearing aids, speakers), other than front-row seating.
Hearing loss leaves children vulnerable to other problems, according to three out of four parents of children with hearing loss. Common problem areas include:
Social skills (52%)
Speech and language development (51%)
Grades in school (50%)
Emotional health (42%)
Relationships with peers (38%)
Self-esteem (37%)
Relationships with family (36%)
Three in ten parents (32%) cite embarrassment or other social stigma issues as a reason their child does not use a hearing aid.
One out of five (22%) parents says they are unable to afford hearing devices.
Four in ten parents were told that their child did not need amplification because they had hearing loss in only one ear.
Two in ten parents were mistakenly told that their child could not be helped because they had high frequency hearing loss. Another 20 percent were told they could not be helped because they had a low frequency hearing loss.
Key educational and public policy questions raised by the study include the following:
Do educators, medical doctors, and hearing healthcare professionals underestimate the impact of mild and unilateral hearing loss on children?
Are pediatricians sufficiently trained to measure hearing loss and advise parents of treatment options?
Is the prevalence of treatable hearing loss among children under-represented in the United States when subjective methodology (e.g., parental awareness) is used to assess hearing loss?
Do parents have viable options for paying for hearing aids for their children if they can't personally afford them?
Why are only a minority of children in America with hearing loss recipients of amplification, and what can be done in the medical and hearing health profession to make sure that all children receive adequate help for their hearing loss?
Are too many young people in America being left behind because they don't fit existing models of hearing disability?
Are 1 Million Dependents with Hearing Loss in America Being Left Behind was conducted by BHI among a national sample of parents of 225 youth from infancy to age 21-all of whom were reported by their parents to have hearing loss and not use hearing aids. The authors of this study also included Dr. Jerry Northern (Professor Emeritus at the University of Colorado School of Medicine), Pam Mason (Director of Audiology professional practices at the American Speech-Language-Hearing Association) and Dr. Anne Marie Tharpe (Professor of Audiology at the Vanderbilt School of Medicine).
"The findings of this study come as a shrill reminder that parents, healthcare providers, and educators must thoroughly address a child's hearing loss if we are to allow that child a fair and equitable opportunity for success," Kochkin continues. "Moreover, it provides an impetus for further dialogue among parents, educators, healthcare providers, and policymakers on how we can better serve our children with hearing loss."
Founded in 1973, BHI is a not-for-profit educational organization whose mission is to educate the public about hearing loss, its treatment and prevention.

Thursday, August 14, 2008

Cochlear Implant

In June we took Sophie to New Orleans to see Dr. Molony at Ochsner Medical Center regarding a Cochlear Implant. I was very pleased with his explanation of the CI process and his role in it. We also met the Claire, one of the audiologist there. She was very nice and was extremely informative. We left with a CAT scan scheduled for the next week. Sophie's CAT scan came out great so insurance "we thought" was sent in and we received a surgery date of Aug 5. A week before the surgery date we were told that insurance had not gone thru due to a mishap in the insurance department and they would have to resend everything to our insurance and it would be another 30 days before we would have an approval for surgery. I was terribly upset. Again I wrote more letters to those i thought should receive them and have moved on. It has now been two weeks since our insurance company received the surgery prenotification and I call everyday to find out if it has been approved. I also received a response from Dr. Molony saying that he will do everything he can to expedite the surgery. That made me happy!!!!

Wednesday, August 13, 2008

I am LOVING this ride!

I wish I could tell you how much I am now so interested in the world of Hearing Impaired and/or Hard of Hearing. I still do not have all of the correct lingo and terminology down pact but this is all fasinating me. Everyday I read and learn more and more on what is out there for my children that I never even new existed. Cochlear Implants??? WOW!!!! Digital Hearing Aids that are bluetooth compatible???? Oh my gosh!!!! This is all so interesting to me! And I am loving it all. Yes my children have a handicap but will I let it stop them? NO WAY!!!! I may/will push them harder than I would if they could hear on a normal level without their aids. Price has been fitted and currently wearing Seimens Explorers, of course one is purle and one is gold for LSU!!!! How awesome is that! Sophie has been fitted and is currently aided with Oticon, Personics. And her's are HOT PINK!!! TOO CUTE!!! They both are doing great with them. We have never really had a problem with them not wanting them on. I think they both realized very quickly the difference with and without them. I am so proud of both of them. They suprise me every day. Andrew has also accepted this new way of life VERY WELL. Andrew puts them on the kids, takes them off. If one is squelling Andrew will go and fix whose ever it is. Andrew works well with both Price and Sophie during therapy time. Or shall I say "Learning to Listen Time." Sophie has began saying all kind of words and sounds. We have also started incorperating a little of "Baby Signs" with her. WOW, she is moving fast! She is ready communicate. Price sees a Speech Therapist, Stacy, each week and Sophie works with an AudioVerbal Therapist each week. Price will begin speech thru the Livingston Parish School System in a couple of weeks. Although we incorperate AVT at home with both Price and Sophie.

More History

One year after Price and Sophie received their first set of tubes it was time to go back for our yearly check up. I did not think Price (now 3) was not speaking clearly enough for his age and I along with other family memebers still didn't think he was hearing well. Sophie (now 1yr and 3 months old) was not saying MaMa or DaDa, or any of the normal baby words that my other two children spoke at that age. She had also started developing a couple of ear infections in the last couple of months preceeding this visit. So all in all I brought all of this info in with me to the yearly visit with the ENT. He looked in Prices ears and said they look great! Tubes had fallen out and no fluid that he could see. Sophie's early looked a little irritated along with fluid buildup in each ear. I then demanded Price have a hearing screening because I was not satisfied with "his ears LOOK great." Sophie again was ordered to have tubes reinserted in her ears for the fluid. Price failed another OAE in both the left and right ear. And we were FINALLY referred to the Woman's Wellness Center for Price to have a sedated ABR. I had NEVER heard of an ABR before this day. I also learned this test could have been done 3 years ago but no one had ever mentioned this to me. In May 2008 Price faild his first ABR and two weeks later Sophie did too. How devestating this was to hear. I never thought in a million years my children would have something like sensoryneural hearing loss. Price was not responding to anything below 45-55 dbl. And Sophie was not responding to anything below 90 dbl. I asked myself "how could I have missed this?" Why did I not catch this sooner? What happend? Sophie had acquired other ways of communicating with us, thru grunts, gestures, babbling. She also would respond sometimes to her name, she was even repeating some words. Come to find out these are words that were spoken loudly; for example "Andrew" or "aaaachooo" when I would yell ""Andrew" from the back of the house she would sometimes repeat that. So it would reassure me that 'oh she heard me say that.' Price's speach was very fast and only we could make out was he was saing. He was talking a whole lot but 70 % of the time we really didn't understand what he was saying. So again I knew he could hear but I knew deep down that he was still missing some. I do blame myself for the late diagnosis sometimes but I told the pediatrician and ENT that I thought there was something wrong on a couple of different occasions. So should I point the finger or go with the flow? I did write letters to those I felt needed to know my concerns and now it is time to get on board with their new diagnosis' and do what I can to help my babies.

Tuesday, August 12, 2008

Our summer began by finding out that two of our three children are hearing impaired. WOW! I did think they were having trouble hearing but being told for so long it was because of fluid I never thought I would hear the news that the audiologist told us in May 2008. Let me start from the beginning with Price and Sophie. I had perfect pregnancies. All ultrasounds showed very healthy babies, they had 10 fingers and 10 toes when they were born. On the day I was leaving the hospital with my 2nd and 3rd child, I was told that they failed their heaing test and it was most probably due to fluid and that is very common. NEVER was I told this was a serious issue nor was a follow up test scheduled at that time for them to be retested. I thought I was going home with perfectly healthy babies. My pediatrician for Price never mentioned anything about Price needing to have a follow up exam for his hearing. I never thought about it again. When Price was 1 1/2 he was put into a daycare center and he started getting the very common colds children get. With these colds, he began getting ear infections. Also during this time I was starting to have thoughts that he wasn't hearing very well. After many months battling ear infections and many sleepless nights, Price was sent to an ENT for evaluation for tubes. At that visit I told the ENT that Price failed his infant screening, I thought he was having difficulty hearing, and that I thought it may be due to fluid. The ENT agreed and scheduled Price for tubes the next week. Price did have an OAE done that day and FAILED. The audiologist and ENT said it was probably due to fluid. There was never a follow hearing exam done. Since I was told his hearing difficulty was due to fluid, I again put it in the back of my mind. During this same time my daughter, Sophie was now 4 months old. She also was having recurrent ear infections and had tubes implanted one month after Price. She also had an OAE at her tube consult but again they said it was fluid causing the test to come out like it did. So again thought all was going to be ok!!!!