ABR Auditory Neuropathy deaf English ENT infant hearing loss leap day OET

A leap day I would have liked to leap over

February 29th 2012 was a gorgeous day in Chicago. I started my day at 8:30, going for a walk in a wonderful and breezy 55 F/ 14 C degree weather. That would have been a perfect start for a perfect day if it wasn’t because the walk was taking me to Children’s Memorial Hospital, where my baby, little Pb, was going to see an audiologist and then an otolaryngologist (ENT doctor). For months we have been thinking he was not hearing well, for months we have observed that he wasn’t babbling at all (until, of course, the day I set up those appointments, when he started to babble a shy neneneneh). We took him to the pediatrician, we had an audiology report done in December, I took him to an otolaryngologist in Spain, and other than a mild hearing loss, he seemed to be fine. We were told that his ears were in perfect shape, or in the worst case, he would have fluid that was easily removed with ear tubes. But yesterday, in a more comprehensive audiology report, they saw that he was not responding at all in one ear, and only to elevated sounds (beyond 90 decibels) in the other. He pass the preliminary physical tests because the ear itself is fine, but he didn’t pass the Otoacoustic Emissions Test. Now we are scheduled for a sedated ABR (Auditory Brainstem Response) on Tuesday. In that test they will place electrodes on his head to measure the brain’s response to sound. At this point, they suspect he may have Auditory Neuropathy, which means that the nerve that connects his ear and his brain is not working well. Doctors don’t seem to know much about it (according to Google, because no other doctor is giving us any information at this point), and it appears to be difficult to manage because it’s unpredictable, it fluctuates, and can change from hour to hour, day to day, week to week or even month to month. Sometimes they hear something, sometimes they don’t, and it fluctuates on the same child. That makes it difficult to treat. Apparently one of the options is a cochlear implant. But we are not there yet, we need to wait for the results. So far, they include an ear infection. his ears were perfectly fine yesterday at the ENT’s, but today when I took him to the pediatrician for a pre-test physical he had an ear infection on his right ear, and fluid in both ears. Sigh. Now he is on antibiotics, and I cross my fingers so this doesn’t interfere with the test.
So far, my next week has a speech evaluation on Monday, ABR test on Tuesday, otolaryngologist on Wednesday. That doesn’t include music/soccer/Dr’s appointment for me, Dr’s appointment for “not so little L” and whatever else gets peppered on our week. Do I scream? I think I’ll rather keep doing laundry and have a glass of wine and a cigarette, because it seems that, once again, we have a long road ahead of us. Plagued with decisions. Thankfully, I have an aunt who is an specialist in speech therapy, and a very good friend who is an specialist in disabilities and has been working closely with the Deaf community. At this point, all I have are questions. Starting with: How do marriages survive in these circumstances? I’ll keep you posted.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.