Hearing With His Heart



Still sound asleep after his test.

Yesterday I took Aaron in for his extensive hearing test, an ABR.  It uses brainstem responses to sound to determine if there is nerve damage causing hearing loss.  It was a mixed experience.  Usually it’s done sedated, but we were trying to do it with Aaron just asleep.  His right ear measured some responses at louder decibels, and he would also stir a little, but there were abnormalities as well.  His left ear measured almost no response, but he would stir a lot and almost wake up when the tones and clicks were sounded.  His heart rate also would fluctuate depending on what frequencies and tones were used.  It never dipped as low as it does when he’s asleep, so it looked like he was receiving some stimulation.  Because he does have damage in his brain due to his extra chromosome, it’s really hard to tell exactly what we’re dealing with:  severe hearing loss, or an inability for the nerves to process the sound in a normal way.

However, this is the interesting part:  Aaron hears and responds in a manner far beyond a normal child his age.  From the beginning, I would talk with him and tell him how we were trying to help him, but there were things he had to do on his own.  And it would take sometimes several hours, but he would do them.  Or, like early Sunday morning when he was acting squirrelly and I was trying to decide if he needed to go it.  I told him that I wasn’t real thrilled with his fluid outputs and his oxygen needs were a little high, and basically I was trying to decide if he needed to be seen.  At the minimum, we were going to head down to AF Hospital and get labs and x-rays.  And I told him about all of this.  I told him that if he didn’t want or need that, he needed to get it together by 7:30 a.m. when I was going to total his last 24 hours of intake/output.  Lo and behold, about 7 he started dropping his usage and upping his saturation rates.  And he gave me a really good diaper at 7:30.  So he got to stay home and play with dad instead of going in to be poked and prodded. 

Today was supposed to be a pretty decent day as far as the weather went.  About 3:00 it was really nice and sunny.  He was looking around past me out the window and grinning.  I asked if he wanted to go to the baseball game.  He stopped looking out and looked at me.  I asked him again, and he grinned really big grins.  I said, “We’ll have to see what the weather is really doing,” and he stopped smiling.  “But it’s supposed to be good, so if it is, you can go.”  Big smiles again.  Unfortunately, it was cold and windy when it was time to go, so he’ll have to try again another time. 

So, the long and short of it is, we’re being referred to the School for the Blind and Deaf.  At least initially, we’ll pursue the oral/auditory route.  If there is a profound hearing loss that can’t be helped with hearing aids, we’ll change over to a sign language method.  We’ll know more about that after they repeat the ABR under sedation when he has his surgeries in July.

But I remain convinced that Aaron understands us.  His ears and nerves may work properly, and they may not.  But communication does take place.  He is hearing with his heart.