Nada, zilch, nothing, big fat goose egg

Is the response we got from Baby K when we tested out his hearing aids at the audiologist. Although all they did was put us in the booth, sit him on my lap, introduce noises to him, and watch his face his see if he responded. Heck we do that all the time at home for free and get the same results! Not that I really expected any huge results considering he is deaf due to a flawed Connexin 26 gene. This flawed gene in general causes the hair cells in the ear (that transmit sound) to die off or not function properly resulting in hearing loss. So chances are the hearing aids will never work but I will continue to put them on just in case there are a few hair cells hanging around waiting to stimulate that auditory nerve.
We go back to the audiologist next month to get him some new ear molds because he will be grown out of the ones he has now by then and they will probably turn up the volume on his aids to see if that helps his hearing.

The results are in...

We now have a reason for Baby K's hearing loss. Our genetic testing came back and my husband I are carriers of the flawed Connexin 26 gene that is associated with hearing loss. Although it was an answer it was still hard news to take. Any children we have in the future now have a 25% chance of also being deaf. We thought what were the odds that two people would plan a trip to Vegas for the same weekend, sit next to each other on the plane, fall in love, and both be carriers of the same mutated gene? So random! I'm thinking we need to get some lottery tickets!
Luckily Connexin 26 is nonsyndromic so his hearing loss is not associated with other signs and symptoms. As opposed to syndromic deafness which involves hearing loss that occurs with abnormalities in other parts of the body. The ENT told us that this makes Baby K a very likely candidate for cochlear implants.
In all I am just happy to have an answer. I can stop looking up everything I took during my pregnancy and also stop second guessing every little thing that I did or happened while I was pregnant. We can now continue on in Baby K's journey into the hearing world.

P.S. Our audiologist was able to track us down some loaner hearing aids, which will help so much since our insurance does not cover them.
Here is some info about the benefits of genetic testing I found on another blog.

Our Journey begins

Today was Baby K's appointment with the ENT. We have been waiting anxiously for a month since his hearing loss diagnosis for this appointment. I must say I was a little disappointed. Everything we discussed I already knew because I researched it and was told the same info from all the other doctors we had seen. We waited a month for them to tell us that he will need to get fitted for hearing aids (between 3-6months), then if they don't work start looking towards getting him cochlear implants. So now we have to make another appointment to get him to get the hearing aids. We could have saved a trip to the ENT and just gone to get fitted for the hearing aids since all he did was look in his ears for two seconds! From what I have learned about the implants is that the sooner they are implanted the better (In Texas 12 months is about the earliest) but hearing aids, a lot of testing, and insurance clearance needs to be done first. So if he needs hearing aids then let us get started on the process of getting them now, not when he is six months old. If he needs a MRI then we need to start ordering it now. I say get started now because I work in the medical field I know how long things take, and if we have to wait a month in between every appointment he may not be able to get his implants by the time he is 12 months old. I told the ENT how I felt about all of this and he immediately started working on getting us in for the hearing aids and the MRI, he was even able to get Baby K in to get his genetic testing done today. They drew his blood to test for the flawed Connexin 26 gene that is associated with hearing loss. We should have those results in a few weeks. Finally I feel like we are getting somewhere!


Such a brave boy! He even had a smile on his face after being poked for blood on his little arm.