Today we had a surprise appointment with audiology. Not sure when it was scheduled or by whom, but we got the reminder call and went.
We met Scarlett's new primary audiologist and discussed the exact parameters of her hearing loss, as well as how to proceed with hearing aids. She explained in more detail the cause of the hearing loss, how it is measured and what changes we might expect. Basically, the chemo kills hair cells, including the cochlear hairs that conduct sound in the inner ear. Some hair grows back after chemo, but not quite the same; it is not likely that she will regain much hearing even now that the ototoxic chemo has been stopped. In addition, the shunt infection, similar to meningitis, as well as the antibiotics used to fight that infection, were likely damaging to other areas of the ear, so her hearing took a big hit in a short amount of time.
|Scarlett's cochlea does not process sounds correctly due to ototoxic chemotherapy. She also has long-term damage from her shunt infection and high-dose antibiotics.|
Her hearing is categorized right now as mild to moderate on the right, more severe on the left. We got a graph to show what decibels and frequencies she is hearing and not hearing. She can hear most speech sounds at close range, especially when we hold her or are face to face. Those speech sounds fade and become difficult to understand around 6 feet away, or at lower volumes; this will make it very difficult for her to learn to speak properly without amplification. She likely hears loud noises fine - things like alarms, live musicians, horns, and even dog barks (which we know she hears, thanks to Cosmo). Subtler sounds, like television, phones, vacuums and normal speaking voices are harder to hear accurately. Quiet sounds, like birds, leaves and drippy faucets are probably inaudible for her right now. With hearing aids, she should be able to hear most all of these sounds, and with the support of speech therapy, should develop normal speech. She is not currently a candidate for a cochlear implant, but may be if her hearing loss progresses.
We are looking into all the supportive services we can access for her. There are a variety of hearing loss support services locally, most of which offer intervention for babies as young as 6 months. We also need to take her for an ear, nose and throat evaluation just to be sure there are no other medical or anatomical reasons contributing to her hearing loss (a standard prerequisite), as well as a developmental assessment to see if any developmental challenges need to be addressed along with her hearing.
It was a very informative, but overwhelming appointment. The cost of hearing aids is huge - anywhere from $1500 to $3000 per ear every few years, not including the inner ear molds and accessories. Most insurance plans don't cover hearing aids, but it seems our current plan does - whew! Hopefully we can get her situated with the hearing aids before we have any insurance changes. However, in the event our insurance is not covering them, there are multiple ways to help fill the gap, including loaner hearing aids from the audiology department, state support services and payment plans.
Right now, her hearing feels like a huge undertaking, as she is at such a critical age for speech development (and if you saw the video from yesterday, she is already experimenting with her voice!) We are already looking into what the best strategies are to support her communication, and the audiologists are suggesting we look at sign language as a supportive communication tool. It will keep me busy for a while.