Not an Easy Week

It has been nearly a week since Sonya’s activation. I want to be positive here, but the truth is that this has been a very difficult week.

While Sonya has done amazing in terms of getting used to hearing much more sound than she was ever used to, she is also a baby. She loses patience quickly and doesn’t love having large devices hanging behind her ears and attached to her clothing. I am grateful that we were instructed to have Sonya wear hearing aids before her surgery – as she has grown somewhat accustomed to hearing devices. However, since her surgery a month ago, she has tasted the freedom of not wearing anything on her head. The cochlear implants are also much larger than her hearing aids and involve much more equipment. I feel like suddenly, what seemed to be manageable has become much more complicated…

Our speech therapists and audiologists have advised us to have Sonya to wear the implants as much as possible. But this has proven to be quite challenging. Particularly, in her car seat (where she spends about 5-6 hours per week on our way to and from speech therapy) and in her stroller.

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The issue is that the two coils, which connect/deliver information to the internal device, are placed on the back of her head. As soon as Sonya moves her head they fall off. Her implants came with a remote which beeps to alert us when the coil is off the implant. This weekend, I think the remote beeped about 40 times…

I could simply turn off the remote – but I want to do everything in my power to ensure that Sonya can hear. I kick myself anytime I notice that it has fallen off.

The good news is that the pilot caps and headbands have worked quite well to keep the processors in place behind Sonya’s ears. As long as she is upright – the processors and coils tend to stay on.

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Aside from the physical adjustment of learning how to effectively use and keep on the new equipment, it has also been an emotional adjustment. Whenever I take Sonya out in her stroller, her beautiful smile never ceases to attract strangers, who often approach us and comment on how adorable she is. I normally welcome such interactions, but these days, I feel nervous whenever it happens. Should I mention why she has wires hanging down from her head? Is it more awkward to bring it up? So far, I say nothing – and just accept the compliment and walk on.

From talking to other parents, I hear that the current adjustment period is temporary – and every baby who gets implants has the same problem – so they are on an even playing field. In time, Sonya will develop the ability to put her implants back on her head as soon as they fall off. In the meantime, would love to hear from other parents any suggestions to keeping them on her head. Thank you!

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