Ciaran and Colin were both sent home from school with notes to follow up on their hearing after a school screening. Most people would not be concerned by this but in our family it is a concern. What was most concerning was two screenings were performed two months apart and they both had issues at the same decibel level. I immediately set up an audiological appointment for both of them. They have had their hearing tested several times before but not recently.
Heading to the appointment I drove the wrong way twice and couldn't concentrate. My Mom asked why I was so nervous. My response " i have never taken any of my kids to a doctors appointment when they said they were ok. I always get bad news and I know this is going to happen today". I was not wrong. We are once again faced with another challenge.
First, here is the good news. Colin passed with flying colors and has a beautiful audiogram.
Ciaran on the other hand did not have the same result. He is showing a moderate hearing loss from 1500 Hz to 4000 Hz. We do not know the cause. We do not know when it happened. He was screened at birth and has had subsequent tests due to our family history (Cormac). he was not sick. He did not have fluid in his ears. Nothing out of the ordinary. He was a very reliable and more than cooperative patient. Our next step is to the ENT and the genetic specialist. We will have him tested for Connexin 26 to see if he also has the gene mutation like Cormac. If he does we will know the cause but really not what the future will hold. We won't know if it's getting progressively worse or anything. He will have to be tested every three months to track him.
I am so fortunate to have so many wonderful people who are experienced with hearing loss and willing to look at Ciaran's audiogram just out of the kindness of their hearts. The professionals who helped Cormac are all amazing and I have the utmost confidence in their abilities. Ciaran is no where in the range of Cormac's hearing loss. Cormac is profoundly deaf. A long time ago someone said "he couldn't hear a jet engine if he was standing next to it.
Ciaran is already way ahead of the game. He has no speech delay and has aquired all the speech sounds. If his loss is progressive he can maintain his speech by having access to sound with hearing aids. He will more than likely get hearing aids. With the technology in existence today with digital hearing aids he can be given gain in the areas where his hearing loss is without an worry of amplifying sound in areas he does not need it. If it continued to decrease along all levels and he was eligible for an implant we would do that as well. Lots of "ifs". Lots of unknowns. Lots of waiting. Lots of stressing.
The audiologist is suggesting he get an FM system for school. This would mean a second child with an IEP. Anyone who has one IEP knows how difficult they are and the thought of a second just plain sucks. Big props to those moms (and I know a couple) who have three children with IEP's. You all are my heros!
I am obviously upset by this news. Not because I am afraid of what needs to be done but because no one wants their child's life to be any harder than it needs to be. They say you only given as much as you can handle. I am trying to figure out how much that will be. I have come to expect things to go wrong and not get upset by these things. I am hoping there is a greater plan for the obstacles and struggles our family faces. I am lucky to have Frank by my side and together we make a good team.
So, that is it for now. We are letting it all sink in. We are going to be playing the waiting game. Waiting for the genetic results, waiting for audiology appointments. Hoping for the best but being prepared for whatever happens.
Here is a look at his audiogram:
And in case you are not familiar. Here is Colin's audiogram to compare. Colin's audiogram is just fine.
2 comments:
My heart just aches for you right now. You are so equipped to handle this though! Praying for strength and wisdom for you during these early days of diagnosis...
for me, I lost 50% when I was very young
if you want, you could get him some Oticon Safaris and they're kid friendly :)
I have those hearing aids and they're definaly amazing
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