Friday, March 20, 2009

more questions than answers, again

Last week Logan failed a third hearing test. Most people would be disappointed by that kind of news; we were elated. It means that we can finally get hearing aids for him! But in the week that has followed, I've done lots of research and have discovered that, true to form, this is not going to be as simple and straightforward as it seems.

You see, Logan's hearing loss is considered atypical. Instead of having a hearing loss at high frequencies, his occurs at the low frequencies. According to several research articles, it's much less common to have a reverse slope hearing loss (RSHL) like his. While hearing loss affects as many as 1 in 10 people in America, it's much more common in the 35 and up age groups. And of the approximately 31 million people in America with hearing loss, only about 1 in 10,000 OF THOSE PEOPLE has a hearing loss like Logan's. That means about 3100 people nationwide. We're not talking average run of the mill loss here. And because of that, effective help will be much harder to find.

Consider that if the audiology department at the children's hospital where Logan is being seen has 10,000 patients, he would be the ONLY ONE with this type of loss. How to deal with this becomes a very important question. Do I take my research with me every time we see someone? Do I "push" what I know since many/most audiologists won't see a patient like Logan ever? How can I push it if I really don't understand it all? Where do I go to ask questions?? Things like "how do you program these aids effectively, since those who have thistype of loss say that the standard methods of programming don't work for them?" How about for children, who can't give you the feedback adults can?" "Do we need to be worried because his loss is symmetrical, since that is usually a genetic thing?" "Is this related to his cleft lip and palate, or is it a'bonus' issue?" And the best one of all for now: "If he has RSHL (which he does--I have the audiograms to prove it) and people with RSHL typically don't have trouble with speech (which they don't due to the frequencies on which the loss occurs), will getting Logan hearing aids help him when it comes to speech and speech therapy?"

I'M SO CONFUSED!!! And discouraged today. But watching Logan and knowing how far he's come in 10 months, I know that somehow he/we will conquer this too. He's not going to quit, so I'll keep pushing ahead. It's the only choice...


  1. Wow... this is all really confusing! I have no idea what the answers are, but I'm keeping you all in my prayers. I know you will find the right path!

  2. Nope, quitting is not an option. We know that intimately at this house. You're right; Logan's hearing loss is confusing. I would bring all your research and questions to each doctor you see. What can it hurt?

  3. You have to become Logan's best and loudest advocate. Doctors don't know it all and some times
    need to be show the facts. They don't always like it
    but when it comes to our children we have to stand up and speak out for them.
    A dear friend learned to do this at a young age - for herself - when her mother couldn't do it. This friend learned how to read her medical charts and spoke up when she felt things were not being done in her best interest.

    Julie in NJ