Ears, Part 2

The results from Keira's hearing test were not what we had hoped. Her hearing in her left ear (the one with an aid already) has gone to severe loss, across the board. Her right ear now has loss, too; moderate at the lower pitches. That's a big change in just 3 months. We'll be going in tomorrow to get her fitted for a second hearing aid.

This stinks. It really does. But there is also a part of me that is relieved, like I always am, to receive a diagnosis. I like to know the plan. I like to know in what direction we're moving, and what course to take. To know we're pursuing the "right" path, provides me with some security, false or not.

Because Keira's hearing was worse, not better, they did not put tubes in her ears and we will not continue steroid treatment. Instead, I expect that we'll work with her hearing aids and work toward cochlear implants eventually. We'll try to make progress with the AAC devices (our second trial machine is sitting on the hearth right now, waiting to be put to use) and a person from IESDB (Idaho Education and Services for the Deaf and Blind) will start making home visits to teach us some sign language.

Dr. Park emailed me on Friday afternoon from Salt Lake to see how Keira's test had gone. When I told him the results he was surprised. He wondered if perhaps she has had a flare up of CMV and asked that she get tested to see. Having this task to do helps me cope. He is a leading specialist in this area, after all, and maybe Keira's fight will further his research and help other kids in the future. They don't really understand yet what it is about CMV that causes hearing loss and Dr. Park's interest in Keira's specific case makes me feel that maybe he's on the verge of a breakthrough.

Furthermore, after observing a couple of Idaho physicians seeing his recommendations and protocol through, Dr. Park directly asked us (me, the ENT, and the audiologist) whether we would be willing to help get our local hospitals on board with targeted screening.* He noted that he's been able to get hundreds of hospitals across the country on board with this and he sent me the published research articles he's used to support it. It's so exciting to see that what we've been through with Keira could get things moving in this way. Something like getting the ENT to talk to the hospital administration about CMV testing is not something that I could have done without Dr. Park's assistance. And it won't even require legislation! I'm pretty excited about that.

I love you all for reading and supporting us.

*Targeted screening refers to CMV testing that is done when a baby fails his/her newborn screening test. This is important because CMV is often the cause of childhood hearing loss, but if it is not tested and diagnosed within the first few weeks of life, we can never know for sure whether CMV was the culprit. Utah has passed legislation for targeted screening and other states are working on it. Targeted screening is different from universal screening, which would be if CMV were part of the newborn screening panel, in which case all newborns would be tested for CMV. No states, that I know of, do universal CMV testing. However, CMV has been officially nominated for inclusion on the U.S. Recommended Universal Screening Panel.