Hearing aids round two

 Well the time has come for Kendall to get her set of expensive chew toys  a.k.a hearing aids. I'll admit I wasn't as excited to get Kendall's aids as I was for her brother to get his.  Knowing that Kemper didn't get any benefit from them I was highly doubtful Kendall would either since she has the same degree of hearing loss. The only reasons we did get them were for that slight chance she could get some stimulation to that auditory nerve and the fact that we had to as part of the cochlear implant candidacy criteria. 

My sweet girl at three months old getting her first pair of ear molds made for her hearing aids.  Thankfully we were able to rent these hearing aids for about $500 as opposed to buying a pair.

Two weeks later Kendall sporting her Phonak Naida S III  hearing aids.

Like the pink sparkles? They were requested by her brother. He insisted that she get pink hearing aids. We couldn't get the actual aids in a color but luckily for us we were able to pick out the color of her molds.

It didn't take long for the squealing feedback noise to drive me nuts. Just the way I remembered. I think it's almost impossible to keep them on a child this young, especially when they are not sitting up yet. For the most part she has left them alone but they just squeal and fall out almost each time she turns her head. I tried putting a cap on her but she hated it and it just made the situation worse. Unfortunately she is not showing any difference in her hearing except for a few times we saw her turn her head to look at the dog when he barked, but we are not 100% sure she just didn't see him move with her peripheral vision.  We plan on getting her cochlear implants a little sooner than we did with Kemper so that should shorten our time using these pesky things!

$$$ chew toys

Yep Baby K finally discovered his hearing aids and he thinks they taste great. I knew this day was coming but I think was in denial. I'm kicking myself for not ordering the Hanna Andersson pilot caps that all the other mothers suggested sooner. I ordered one but I may go crazy before it comes in. We have been using the huggie aids but he has been a pro at ripping them off in two seconds flat. I find them difficult to put back on and K usually has a fit, so they are not quite working for us.




So here we are getting our second pair of hearing aid molds done. Old reliable(what we named his paci),toy and we're good to go!



Kemper hasn't really shown us that he is getting any benefit from his HA's so it's been hard finding the motivation to keep putting them on. I find myself putting them on later and later and taking them off earlier and earlier. On October 1st we are going to one of the many cochlear implant evaluation appointments and they will test exactly how much benefit he is receiving from them.




Shortly after taking this picture he had a melt down, he was done with having his ears messed with. Or maybe pink is just not his color!

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.

Step one: Hearing aids

Today Baby K got his hearing aids...


and this is what he thought of them


I don't believe they hurt him, he just hated being held down and us tugging at his ears.

Much better!



Getting hearing aids is our first step in the Cochlear Implant candidacy.If he benefits from the hearing aids there will be no need for the implants.I pray that he gets some benefit from them but from what I have researched and heard about children with a Connexin 26 mutation, usually they do not and CI's are the next option. I must admit I was little sad when they first put them on his ears. Seeing them on his ears made it all real, this is really happening, our baby is deaf. I didn't cry but my throat hurt a bit from holding it back. This is going to be a long process but I know it will all be worth it in the end. Tomorrow we go for his MRI of his auditory canals to make sure there is nothing structurally wrong that would interfere with getting the implants.

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.

How can you deny this beautiful face?

"He who hath ears, let him hear!" Matthew 11:15


Today Baby K had his appointment with the audiologist to get fitted for his hearing aids. They made molds of his ears and his hearing aids should arrive in a couple of weeks. He's deaf so why does he need hearing aids you ask? Well just for the slight chance that he may get some hearing out of them and to help stimulate his auditory nerves.It is also part of the process we must take in order to become a candidate for the cochlear implants.
I must admit I'm not looking forward to the hearing aid trial. Trying to keep hearing aids on an infant, having to get new molds made every few weeks as he grows, listening to the constant feedback, oh yeah and paying for the darn things. Apparently many insurance companies including mine do not cover hearing aids.I guess they just don't consider them a life or death need. How about quality of life you morons!? Anyway luckily some other moms told me about getting some loaner hearing aids, so then all we have to pay for are the molds and services. Thankfully our audiologist said that she would work on getting the loaners for us, so that will help us a great deal.
We also recently found out that our insurance company will not cover the cost of the cochlear implants either. I thought we might have a battle to get both implants, I never thought that we were going to have to fight to get one! Granted right now we don't even know if Baby K is a candidate for CI's but somehow I knew we would start running into obstacles like this. So soon we will start our battle with the insurance company and searching for other avenues so that our son will be able to hear someday. So for right now prayer will have to be our insurance!