Yesterday was a little tough. So Caleb had a hearing test done, the first real hearing test, the rest have been done under anesthesia. Unfortunately, Brian couldn't go because it is hard financially for both of us to take every clinic day off. Caleb was scared to death. He didn’t understand and pretty much cried through the whole thing. The first try did not work as Caleb could not calm down long enough to even get the test started. Once he did calm down we tried another approach to try to get results, he still was pretty scared and upset. My mom even was asked to come in the room to try to help calm him down and distract him, so I could hold him. He calmed down enough to do a test. It was sad to see him with headphones on and I could hear the noises, and he didn’t respond at all. Over the years, I have done my fair share of many silent prayers. I sat there praying that all those hearing tests done under anesthesia weren’t accurate and this would show he could at least hear more in that right ear. I also prayed he could hear just a bit with that left ear, while I knew that he had no anatomy to even transmit sound-I guess a pretty silly prayer. But I prayed. Prayer doesn’t always work out as you hope, but it is just because it is not God’s will for things to work that way. But that doesn’t mean that I won’t pray. The hearing test concluded and the audiologist sat us down and said pretty much what we already knew as far as what Caleb could hear. He is completely deaf in the left ear and has a moderate to severe loss in his right. She tested to see if a baha would help him and she thinks it would do no more than the aid. When she said this, I don’t know why, but I got a lump in my throat and fought tears. It’s like you already know something but you were hoping for a miracle and to hear it again, just hurts. But I held it in and managed to maintain my composure for a bit. So the audiologist took my mom, Caleb, and myself to a waiting room while she went and filled in the hearing specialist on the results. She came back and started walking us down the hall to go meet with the specialist. We, once again, started talking about the hearing test and the results and I couldn’t keep it together. I just started crying. I just told her I wished there was more we could do for him to help him hear. My wonderful mom was there for me, as always, and I was holding my little man’s hand, crying. I just look at him and want nothing but the best, like any parent. Then I do the typical ‘he has so much more to contend with than the average child, he deserves a break’. As we were waiting for the doctor another mom who was there with her child, I think to see an ENT for tubes, just walked up to me and hugged me saying ‘ you look like you could use a hug’. I just cried saying ‘I hate clinic days’. I am sure she didn’t get it, as she didn’t look to be a children’s frequent flyer, and I am glad she doesn’t. But what a great hug. Thank you to her, I need that hug. What an awesome person to just walk up to a stranger who you know is upset and give them a hug.
Then we saw the doctor, he walked in right away and kind of frowned and said ‘no baha’. I said ‘I know’. He said ‘I know it’s tough, but at least we know’. He just explained that there would be no benefit to the baha for Caleb and he would try it if he thought it could provide any benefit. He then went on again to discuss those images that I have discussed before that they did during his last surgery. He said it is by far the most abnormal images, in regards to the ears, he has ever seen. He said that each ear is made of three inner canals, with some fluid in them. These canals, and the fluid, are your body’s balance system. Caleb does not have any of those canals in EITHER of his ears. The doctor said, in one ear, he saw a tiny bit of fluid, which is probably Caleb’s version of this balance system. So this explains the balance issues. He also reiterated that Caleb does not have a hearing nerve in the left ear and the hearing nerve in the right ear is small. So essentially, Caleb has does not have any anatomy in the left ear and what he has in his right is not complete. So, I asked him, what can we do to help him hear. I asked him about the FM system in his classroom and he said emphatically ‘yes’. Get that installed no matter the classroom size. The FM system is where his teacher will wear a microphone that transmits to Caleb’s hearing aid. This will hopefully help him ‘miss’ less than what is going on in the classroom. I have already called his awesome teacher and she is already getting the ball rolling on this. We are blessed for him to have such an amazing teacher. He also said it would be awesome to get an FM system in the home, with the caveat that insurance does not cover it and it is expensive. But he says a couple of his patients do have it and have benefited from it greatly. I will be looking into that and see if we can make it work. He said to continue to do ‘gate training’ to help with the balance issues. I have already talked to his therapists and they are already putting together a plan.
Caleb goes back in 6 months for another hearing test; I have asked his teachers and will ask his hearing aid audiologist, here in Wheeling, if we can start doing things similar to what they do in the tests to help him not be so scared of the tests. Hopefully, this will help him not get as upset as yesterday.
So that’s where we are. Poor Caleb had a rough day yesterday and now is sick with a nasty cold that Camryn and I had. I am hoping for a relaxing weekend with my awesome family.
Thank you all for stopping by.
God Bless you all!!
God Bless Caleb and Camryn!!
Caleb was born with two rare syndromes, CHARGE and DiGeorge. Caleb is the 6th person in the world born with both syndromes. CHARGE is a multisystem-effecting syndrome which can cause several severe anomolies. DiGeorge prevented Caleb from developing an immune system. He spent over a year straight in the hospital, had multiple surgeries with a possibility of having more in the future. This blog details his heroic journey and story. God Bless Caleb!!
Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"
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