It was December of 2001 while we were at Kluge Feeding Clinic in Charlottesville, VA that we found out Ray had a hearing loss. The loss most likely stemmed back to when he was on multiple antibiotics, including Gentamicin, to fight the peritinitis infection. Below is a letter I wrote to a friend of mine at the time. It shows how I felt when I found out we had yet another issue to deal with….
Ray and I are back in Charlottesville for the 2nd week of therapy. The whole program here has been somewhat frustrating. Ray’s made some progress that I don’t think he could have made from home, but he’s not made the kind of “great” gains that I was hoping for. That’s really frustrating as this is one of the best programs of it’s kind in the country and certainly the best on the east coast. I also feel like some of the time here’s been wasted, as the staff didn’t do a good enough job of getting information from Ray’s doctors in advance and consequently some things were held up for a couple of days waiting on the doc’s formal approval. They’ve actually now put him on Paxil (an anxiety mediation) to try and calm his severe anxiety over the whole eating issue. Maybe they should’ve put me on it too. 😉
On top of everything else I’ve gotten some news here that completely blew me away. Since before Ray started Kindergarten we’ve always questioned whether or not his hearing had been affected. At that point, he wouldn’t wear the headphones necessary to do the testing, but by the time he was in Kindergarten he was willing to wear them. Since his teacher that year had also questioned whether his hearing was affected, we had Fairfax County Schools do the testing. They have an actual audiologist and complete facility with a sound booth. At the time they said his hearing was “normal”, but suspected an auditory processing problem, meaning he could hear the sounds, but had difficulty separating background noise from information. That’s when he was able to use the FM system in his classroom. He wears a small headset like a small walkman and his teacher wears a mic. He gets her voice while the background noise is muffled by the headphones. Initially this was just a trial, but by 1st grade we’d proven that it made a difference for him in the classroom. In order to keep using the device he had to go through another hearing check with the school’s audiologist and this time she tested him more thoroughly. Again she determined no hearing loss, but a processing problem. Consequently, he got to continue using the FM system in the classroom.
Well when we got here, everyone again questioned his hearing. They wanted to test him again, so we went ahead to see what would happen. The audiologist here has determined that not only does he have hearing loss in both ears, but it’s well beyond the mild range and she ranks it in the moderate to severe range. Gee, think that might explain why he has trouble following verbal directions? So if the testing here is correct, then now not only do we have a whole new area to deal with, with a completely different set of specialists, it’s something that should’ve been dealt with two years ago! Meanwhile, the kid’s been trying to get along without being able to hear what’s going on. You can’t even imagine how angry I am right now at the school’s audiologist. I didn’t expect her information to be perfect and if she’d indicated even a mild hearing issue I would’ve followed it up with more formal testing, but twice she definatively stated that there was no hearing loss. Now I’m trying to get him in with an ENT over at NIH. I’m working with the docs there to refer him to someone. I’d love to use the ENT from Duke, because he is wonderful. He’s the one who trached Ray when no one else thought he could survive it. The problem is that when dealing with something like hearing aids you need to be in their offices frequently and traveling 5 hours to Duke each time would make that a problem. Anyway, hopefully he’ll get in with someone over at NIH quickly, so we can begin to make some progress in this area.
Eventually, we met with an ENT here in Fairfax, who determined that his hearing loss appeared stable and he was cleared to see an audiologist who would fit him with hearing aids. Neither our insurance nor the state of Virginia provides any benefit toward the cost of hearing aids which was close to $6,000. Hearing aids have a lifespan of around 5 years.