A chance for Caeden to hear again

My name is Jennifer and I have an amazing 13 year old son named Caeden.  Unfortunately Caeden suffers from a rare medical condition and has undergone over 20 procedures by the time he was in 4th grade. Currently we are in the 2nd appeal process with our insurance company, Blue Cross Blue Shield of NC. I have faith that Blue Cross Blue Shield will finally approve Caeden's next surgery of the BAHA Partially Implantable Magnetic Bone Conduction Implant.  This procedure averages between $75,000 - $110,000. If our insurance finally agrees to cover this procedure, I will still be responsible for 20% of the total procedure costs as well as a $1,000 deductible. This is a tremendous expense for a single mother to cover, but a necessity for my son's future success. I am asking all of you to be a part of giving Caeden the chance to hear again! 

I would like to share a little background of Caeden's medical history that will hopefully help you understand why we are at the point of implanting a BAHA Attract hearing device. 

Caeden was born with a cleft palate and because of this his estuation tubes have never worked properly, resulting in fluid unable to drain from his ear or ear cavity. Over a short time this then resulted in negative pressure in his ear canal and fluid buildup. Caeden had undergone several procedures of inserting tubes in his ears. He was having the tubes replaced every few months as they would fall out due to his ear drum being so thin and fragile. Before long his ear drum was basically as delicate as a wet Kleenex tissue. It wasn't too long after Caeden turned 2 years old that I was informed the ENT doctors could no longer insert tubes in his ears. Without having tubes in place to help drain the fluid, it then just collected in his ear canal and ear cavity. This basically acted as a warm, dark, moist place for nasty things to grow, in which it did. Caeden was soon diagnosed with Cholesteatoma. (Please see the insert at the end from the American Academy of Otolaryngology - Head and Neck Surgery.) Caeden ended up having the worst case of Cholesteatoma, which resulted in having an impact of Caeden's learning ability. Caeden was severely behind in speech and language development. At 2, Caeden was enrolled in a Birth to Three Program with an IEP set in place to help him improve speech, learn simple sign language to communicate, and Caeden was also diagnosed with Sensory Integration Dysfunction. When caeden turned 3 he was then transferred in to the Early Childhood Development Program which continued in his speech & language. Once Caeden began kindergarten he continued seeing the speech therapist at his elementary school twice a week & follow an annual IEP. 

Over the next few years Caeden had to go in for several more procedures to remove the reoccurring cholesteatoma. Be aware the procedure to remove the cholesteatoma consisted of the surgeon having to lance an opening behind Caeden's right ear about 2-2.5 inches long, use a drill to access where the cholesteatoma grew and then his eardrum would be repaired by using a skin graft of Caeden's cartilage. Caeden's hearing diminished rapidly every time he would undergo another procedure to remove the cholesteatoma that continued to come back. Caeden's hearing in his right ear decreased severely. By first grade he was fitted for his first behind the ear hearing aid. Caeden was thrilled to be able to hear again out of his right ear!

During Caeden's elementary school years he was seen & treated about every 6 months. Every procedure the doctors were forced to remove more and more of the 3 delicate bones that help produce sound in Caeden's middle ear. Finally it was decided that it was necessary to remove Caeden's entire ear drum & the remaining fragments of bones as this was the only option left of hoping to put an end to the cholesteatoma that had severely eaten away at Caeden's ear drum & hearing.  As a mother this is one of the most difficult things to comprehend and unbearable to explain to your child. It was absolutely heart wrenching as I have never felt so helpless! 

Caeden lost his hearing completely in his right ear when he was in the 4th grade and they removed his ear drum and the remaining fragments of the 3 small bones that were left. 

Caeden struggled in his school to hear, often missing parts of directions & lectures from teachers. Caeden had preferential seating in all of his classes and I made sure his teachers were aware of his hearing loss & gave several suggestions on how to help aid him in the classroom. Caeden's hearing loss affected him academically, socially, and psychologically. 

Due to Caeden's reoccurring cholesteatoma and the damage it did to his inner bones and because they were forced to remove his ear drum, he is unable to wear a behind the ear hearing aid. During the procedure they had to widen Caeden's ear canal. Now that his inner ear is empty, Caeden has a build upof debris and dead skin that is required to be suctioned out every 6 months at Froedtert Hospital. This procedure will occur every 6 months for the rest of Caeden's life.  

The BAHA Partially Implantable Magnetic Bone Conduction Implant is the only option that will allow Caeden to hear with his hearing loss & rare condition. Caeden's recent hearing tests showed that his "good ear" (his left ear) was still not nearly hearing at 80%. Caeden's doctor is worried that there is a strong possibility of Caeden losing more hearing out of his good ear due to the fact of his estuation tubes not working and fluid still not draining properly. We are trying to be proactive in Caeden's situation by giving him the gift of hearing again out of his right ear and doing so before he loses any more hearing out of his good ear. 

Caeden is going to turn 14 years old in just a few weeks and he will be finishing 8th grade this June. Caeden was accepted into a private high school and is excited to start next fall. He has struggled not being able to hear his entire life. He has struggled with speech and language; he has struggled with making friends and being accepted socially. All of these obstacles he has faced his entire life can finally come to an end, all by being able to hear! Please help by giving Caeden the gift of hearing and help him to succeed in life! Thank you for taking the time to read our story & for any contributions you are able to give!!

Please note: Blue Cross Blue Shield has never been responsible for covering any of Caeden's past procedures. I have been employed by the same company for 19 years and my employer recently switched to Blue Cross Blue Shield. I am a single mother to Caeden and his older brother and I have held my job and cared for my children, including taking time off unpaid through FMLA to care for Caeden during & after his procedure. This procedure is a necessity for my son's life & well-being. 

http://www.mountsinai.org/patient-care/service-areas/ent/areas-of-care/hearing-and-balance/cholesteatoma
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Organizer

Jenny Ahles 
Organizer
Racine, WI
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