Over half of the individuals diagnosed with a 1P36 Deletion have hearing impairment. My little one has flunked more hearing tests than most individuals take in a lifetime. We've been working with several audiologists and an ear, nose and throat specialist to help her overcome this as much as possible.
First she got tubes to help her inner ears clear out. I have to say, if ever you're going to have surgery, I recommend having tubes put in. I recall being billed for a total of 11 minutes of operating room time. And my daughter was happily playing like everything was normal that same day.
Once, we knew her ear canals were cleared up we did some more extensive testing to see what frequencies she'd need to have corrected. Most hearing losses are in the upper frequencies, but it turned out that my little one was missing out on the lower frequencies. That meant most vowel sounds in speech and other important sounds weren't getting through.
My wife got in touch with the State School for the Deaf and Blind and coordinated with their audiologist to borrow a pair of hearing aids for our little girl to get used to. We just picked them up this past week and it's amazing the difference we've seen already.
We went for a walk that same evening and my daughter kept looking in the sky because it was the first time she'd ever heard an airplane fly over. She whipped her head from side to side because she'd never heard a car go by before. She laughed as we talked to her. It was truly a miracle happening right in front of me.
Getting hearing aids will be an adjustment. She gets very angry when my wife or I put them in, but after she calms down it's really amazing to see her react to all the sounds she's never heard before. She mostly leaves the aids alone once they're in, which is good. Although my wife did catch her pulling the right one out of her ear and chewing on it this morning. I hope we break her of that habit quickly, especially since their on loan until we save up to buy her a set of her own! We'll make sure we clean them regularly! ;-)
When raising a disabled child, much of the progress comes pretty slowly so when a major breakthrough, like being able to hear, comes along, it's so much fun. You can actually see the wonder on my daughter's face as she rediscovers her world that is now filled with sound. Soon we hope she'll start mimicking speech. Some babbling around our house would be welcome noise for sure!