Update on Cami

At the beginning of this month Cami had a sedated MRI and ABR test. An ABR test is when they put pads on Cami's head and send sounds into her ears to test the brain's responses to sound. The MRI was to check her anatomy to see if it would allow for cochlear implants and to see if there was any seen cause to her hearing loss. The most common cause they usually can actually see is EVA. Her MRI came back completely normal - all of her nerves, cochlea, etc were all normal. This means her hearing loss is most likely caused by a "silent" genetic mutation. They refer to it as silent because this gene shows up very randomly down the the genetic line. The audiologist told me the only thing he could think of is if I had a viral infection while I was pregnant; however, this is super unlikely. We can get genetic testing done, but it's quite a few thousand to get done and sometimes you don't even get answers. We will get this testing done at some point. Mostly so Cami can know for herself. Knowing for sure if it is genetic doesn't impact our decision if we want more kids or not so we don't see the urgency. If she starts to show delays or deficiencies in other parts of her development we will look at genetic testing more seriously. Sometimes a certain gene that causes hearing loss can cause other impairments, but we will just wait and see. Lots of people never get genetic testing done.

 

For her ABR, the results came back different than our first un-sedated ABR. We were previously told she was profoundly deaf in her left and severe to profound in her right. However, after this ABR we found that her right ear is more moderate to severe. This means her right ear no longer can have a cochlear implant, at least at this time. She will continue to have a hearing aid on her right. If we feel the hearing aid isn't sufficient for her as she grows up, then we will revisit a cochlear implant. But it will be good for her to have a natural/acoustic sound from her right to work with the more mechanical sound from her cochlear implant. We do a lot of hearing training with her. One thing I did was go in when she was sleeping and yell to see if she would wake up. Doing this showed that she did wake up which means she does have better hearing than profound. So this was a great thing! With her aids we can definitely tell she's hearing. She is working on tracking sounds and is doing so good. 

We have an amazing surgeon, Dr. Page. He's the head of the otorhinolaryngology department at Phoenix Children's Hospital.  He is apparently the guy other ENTs go to with questions. He's the guy that people consult about their cases. He has always been very clear and open about every option, risk, outcome with us. We can tell he cares about doing the best for Cami. Pairing that with his success and knowledge, we really trust him.

We were previously really pushing for early implantation when we thought she would be bilaterally implanted with cochlear implants so she can start getting sound as early as possible. Lots of insurances are starting to get behind this as well. However, now that she will only be unilaterally implanted, our urgency and the need isn't as great. Dr. Page still tried to submit with our insurance for implantation at 7 months because earlier is better! However, if insurance denies it, we don't have a lot of data to back up our request like we did with bilateral implants. If they do deny it, we will implant in the spring hopefully.  We should find out in a week or so what insurance has decided. We will be okay with any result.