How we finally found out about the hearing loss....
Phillip was born right around the time WV put newborn hearing screening in place - so I am honestly not sure if he was even tested. I know that no one came and told me that he had any kind of hearing loss. That is something I would definitely remember. Less than three years later though - he failed a hearing screening at our local exceptional children department.
At that point the test wasn't 100% conclusive or 100% trust worthy - and it was suggested that we get his hearing screened in a sound booth... Ha Ha HA! To this day (over 9 years later) Phillip doesn't accurately respond to hearing booth testing. So after multiple tries and tests - it was found inconclusive as to whether or not he did indeed have a hearing loss.
He was learning new words, responding to sound, and watching television - so it was just "assumed" that all was well with his tiny little ears.... Unfortunatly it just wasn't so. :-(
In 2010 (I believe) the state of NC approved complete sedation for a test called Auditory Brainstem Response (ABR). Prior to this - oral medication sedation was the only thing approved. And yes, we tried this - but due to the amount of medication Phillip takes on a daily basis that "May cause drowsiness" - oral sedation medications don't really work on him.
So in January 2011 we went to Duke University and had Phillip put to sleep and an ABR done on him. The test results were heartbreaking. Phillip was found to be deaf in his left ear and hard of hearing in his right ear. *insert shock here*
At that point the test wasn't 100% conclusive or 100% trust worthy - and it was suggested that we get his hearing screened in a sound booth... Ha Ha HA! To this day (over 9 years later) Phillip doesn't accurately respond to hearing booth testing. So after multiple tries and tests - it was found inconclusive as to whether or not he did indeed have a hearing loss.
He was learning new words, responding to sound, and watching television - so it was just "assumed" that all was well with his tiny little ears.... Unfortunatly it just wasn't so. :-(
In 2010 (I believe) the state of NC approved complete sedation for a test called Auditory Brainstem Response (ABR). Prior to this - oral medication sedation was the only thing approved. And yes, we tried this - but due to the amount of medication Phillip takes on a daily basis that "May cause drowsiness" - oral sedation medications don't really work on him.
So in January 2011 we went to Duke University and had Phillip put to sleep and an ABR done on him. The test results were heartbreaking. Phillip was found to be deaf in his left ear and hard of hearing in his right ear. *insert shock here*
What the test concluded - exactly.
It was determined that Phillip has "Asymmetrical Sensorineural Hearing Loss"... You understand that - right?? Yeah, me neither... keep reading and I'll explain.
~Asymmetrical (for this purpose) means that he does not have the same amount of hearing loss on both sides.
~Sensorineural- of, relating to, or involving the aspects of sense perception mediated by nerves
In other words: "this hearing loss involves damage to the nerve cells of the inner ear, the auditory nerve, or the hearing centers of the brain. The nerve cells in the cochlea can be broken, non-responsive to sound or even missing. The nerve tghat goes to the brain (the auditory nerve) could be damaged, missing or not functioning properly. And, the part o fthe brain that interprets sound may not be able to receive or interpret the signals properly. Sometimes the cochlea never developed at all. This type of loss is considered permanent because nerve cells are not able to grow back or be replaced like other types of cells in our bodies." (Info from Understanding Your Child's Hearing Loss: A Guide for Parents)
Because Phillip has this type of hearing loss he is not a candidate for cochlear implants - for two reasons. The first reason is that Phillip's hearing loss is due to a lack of response from his brain. A 'new' cochlear won't make his brain respond (unfortunately). The second reason is because Phillip has residual hearing (partial hearing) in his right ear and a cochlear implant is not approved for a child with natural hearing (because the placement of the implant would take away the childs natural hearing ability)- and the FDA has not approved monotherapy for cochlear implants. That means they won't approve for him to have ONE cochlear and one regular hearing aid.
~Asymmetrical (for this purpose) means that he does not have the same amount of hearing loss on both sides.
~Sensorineural- of, relating to, or involving the aspects of sense perception mediated by nerves
In other words: "this hearing loss involves damage to the nerve cells of the inner ear, the auditory nerve, or the hearing centers of the brain. The nerve cells in the cochlea can be broken, non-responsive to sound or even missing. The nerve tghat goes to the brain (the auditory nerve) could be damaged, missing or not functioning properly. And, the part o fthe brain that interprets sound may not be able to receive or interpret the signals properly. Sometimes the cochlea never developed at all. This type of loss is considered permanent because nerve cells are not able to grow back or be replaced like other types of cells in our bodies." (Info from Understanding Your Child's Hearing Loss: A Guide for Parents)
Because Phillip has this type of hearing loss he is not a candidate for cochlear implants - for two reasons. The first reason is that Phillip's hearing loss is due to a lack of response from his brain. A 'new' cochlear won't make his brain respond (unfortunately). The second reason is because Phillip has residual hearing (partial hearing) in his right ear and a cochlear implant is not approved for a child with natural hearing (because the placement of the implant would take away the childs natural hearing ability)- and the FDA has not approved monotherapy for cochlear implants. That means they won't approve for him to have ONE cochlear and one regular hearing aid.
What all this means for Phillip:
Phillp was fitted and given a hearing aid ONLY for his right ear. We do not know if his hearing is static or changing - so it was recommended that he have another ABR in a couple of years (that would be 2013) to check if he has more loss or not. He was placed in speech with a therapist who specializes in working with children who have hearing loss. (Shes AWESOME) Changes were made in his classroom setting to help accomodate his hearing loss: such as his teacher using an FM system (basically a microphone that goes straight from her voice to his hearing aid) and his placement in the classroom seating.
Unfortunatly at this point he is not wearing his hearing aid at all because he goes in his room and takes the hearing part -apart from the ear mold - and throws it - EVERY day. We have not been able to find the hearing part since the last time he threw it and a replacement is $300- plus they will want to re-test him which requires him being put to sleep under general antesthesia which is scary and can be dangerous/ life threatening. So we are continuing the search and praying we find it and can work some more on putting it in his hearing aid container - instead of throwing it.
He has been learning to use and understand sign language. He does very well with understanding it - not so great at actually using it because he lacks dexterity in his fingers. He tries though and that counts.
check back... more to come.....
Unfortunatly at this point he is not wearing his hearing aid at all because he goes in his room and takes the hearing part -apart from the ear mold - and throws it - EVERY day. We have not been able to find the hearing part since the last time he threw it and a replacement is $300- plus they will want to re-test him which requires him being put to sleep under general antesthesia which is scary and can be dangerous/ life threatening. So we are continuing the search and praying we find it and can work some more on putting it in his hearing aid container - instead of throwing it.
He has been learning to use and understand sign language. He does very well with understanding it - not so great at actually using it because he lacks dexterity in his fingers. He tries though and that counts.
check back... more to come.....