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    Posted July 3, 2014 by
    williamsgang
    Location
    Winston Salem, North Carolina
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Haelee my Hero

     
    I would like to share the story of my daughter Haelee Ann Williams and why she truly is my hero. Haelee is 8 years old.She is a child who loves to read and someday would love to be a chef. Haelee is hearing impaired, diagnosed with bilateral sensorineaural hearing loss at 5 years old. She currently wears hearing aides and uses a FM system.I will share the story from the begining of her life. When I became pregnant with Haelee I had many complications with the pregnancy due to placental previa and placental abruption.I was hospitalized and put on complete bed rest for two months prior to her birth.I truly thought I would lose my precious baby girl.Haelee was born at 28 weeks via c-section weighing 2lbs 13oz, 15 " long on my 17th wedding anniversary. She remained in the NICU for a month in a half. She suffered from severe jaundice, treated for possible sepsis, she had a skin tag above her left ear, , she received blood transfusions, was treated for a staph infection in her eye. When it was a few days prior to her coming home she had the routine newborn hearing screening and failed the test in her left ear. They told us not to worry about anything and administered the test one more time and she failed again. We were told to follow up and we did. She was tested again and we were told everything looked fine.We did not think anything else about it and just went with what we were told. She developed her speech so there were no indicating factors for us to think she had any problems with her hearing. We started to notice certain behaviors around the age of 3 1/2 years old. When we would enter the room Haelee would have her left ear against the television. She would ask us to turn the television louder. She also was not responding to direction from us and we put her in endless timeouts thinking this was terrible two's bad behavior which we feel so much guilt about even today. We realized that if she was not facing towards us she was not hearing what we were saying to her.She had her 4 year check up and was given a hearing test and she did not pass. Her doctor felt like her age tainted the results. She started preschool and her teachers said they did not feel she was ready for kindergarten of course I attributed that to her prematurity and just needing more time to catch up. At her 5 year old checkup she failed the hearing test again and we were then referred to a ENT. Haelee had her first audiogram and the finding indicated hearing loss. The doctor wanted to put tubes in her ears and felt that this would correct the problem. On December 17th Haelee had her second follow up audiogram and as I was sitting in the chair behind her listening to the beeps and just praying that she was going to hear them my stomach sank, she did not hear them. In that exact moment I realized my child was partially deaf. I had feelings of overwhelming sadness and guilt . Why did I not know this from the beginning? Why when I questioned the skin tag above her ear and was told it was nothing of course now I know that is a precursor to hearing loss.Why didn't I bring her for a second opinion on the follow up hearing test? I knew I had to get it together and move forward and figure all this out. We then went onto a larger hospital in our state that is the best group of pediatric Ent's and audiologists at UNC Chapel Hill Hospitals. We were put in touch with a great advocacy group called Beginnings. They are a non profit service provided in the state of North Carolina. Our parent educator Terri Burcham came to our home and she was truly the first person I could ask all the endless questions that I had. She put us in touch with another family who loaned us a pair of hearing aides. Unfortunately hearing aides are not covered under our insurance plan which left me in complete shock. How can we cover viagra but not cover hearing aides so my young child can hear? How will she learn in school if she cannot hear? Haelee did get her new set of hearing aides at 5 years old thanks to Dr. Buchman who also diagnosed her with severe bilateral sensorineuaral hearing loss in her left ear and moderate in her right ear. My first question was will Haelee lose all of her hearing over time and he said he does not know we will just have to wait and see over time. I wanted to know why? I had to know why? I poured over 100's of pages of my and Haelee's medical records to find some kind on clue. I researched endless hours to read all I could about the causes of hearing loss. I did notice that Haelee was given a specific drug called gyntemycin used to treat possible sepsis. This type of drug can cause hearing loss this I did not know. I was given many antibiotics when I was hospitalized prior to Haelee's birth. Dr. Buchman had to let me know that I just might never know the true cause but it could be multiple factors primarily her prematurity,the severe jaundice and all the antibiotics.I have to admit I still struggle with this even today. When Haelee got her hearing aides in the beginning of first grade we thought to ourselves ok things are going to be just fine now but that is not how things went. I advocated for Haelee right from the start. We had her IEP (individualize Education Plan) in place where she received special services provided by a hearing impaired teacher daily as well as special accomodations within the classroom. We were so confident that everything was going to be fine but we were wrong. Haelee made no academic progress the entire year. We were so upset and just dumbfounded as to what else could be going on. I knew we had to have testing done and we were referred to the CIDD (Carolina Institute for Developmental Disabilities). Upon a full day of testing Haelee was diagnosed with severe attention ADHD and anxiety. We were told that between Haelee's hearing impairment and the ADHD she would not be successful in the classroom unless we considered medications. Again my heart sank ,no no no I don't want her to be on medications but again after doing my research and understanding the obstacles she was facing I had to do the right thing. Haelee takes two medications Adderall and Intuniv everyday. Haelee had a great year in 2nd grade and even made honor roll for the first marking period and also made student of the month for the month of May and June. My heart was so filled with joy as I watched her face as she received her awards. Haelee is a beautiful,smart, funny child who is thriving and truly is my Hero, her strength is truly admirable. I will continue to be her biggest advocate throughout her entire life. I will be there for the challenges and for all the celebrated successes. I teach her to follow her dreams and reassure her that she can be whatever she wants to be. When she has had her meltdowns in the past and asked me "why Mommy can I not hear like everyone else?" I say "baby you are special in so many ways and everything will be ok". Thank you. Deidre Williams

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