I don't know why I was surprised to learn today (once again) that A is deaf in her left ear. I've known that fact practically since she was born.
I think that because A is doing so well, I forget sometimes that she has medical complications. Because she seems to see ok, I forget that she has fields of vision missing, due to her colobomas. Because she is talking so much, and even recently tested within normal range on an articulation test, I forget that she has a paralyzed vocal cord and other factors that led to speech delay. Because she is walking so well now, I forget that she has no semicircular canals.
And because she seems to hear so well (in fact, is aided to about normal hearing in her right ear) I forget that she is deaf in her left ear.
Today we had an audiology appointment at Children's Hospital. We usually go there twice a year, and do both aided (with hearing aids) and unaided tests. Today was an aided test. We went into the sound-proof booth, and first tested her right ear, which is her "good" ear. Our audiologist noticed that she wasn't responding to some frequencies as well as she used to, and made a minor adjustment to the hearing aid. After re-testing, A was responding to almost all of the frequencies. I was happy the adjustment was made; now A will be hearing even better.
We then tested her left ear. We have not tested her left ear, aided, in quite a while. An MRI done when A was a baby showed that she has no auditory nerve in that ear, but early testing did show SOME response (albeit in the profound range, but still) in some frequencies. We have always put a hearing aid on her left ear, because frankly no one can tell us what she is hearing except for her...and she doesn't have that cognition and language capability yet. After all, she is only 4 years old.
To test her left ear, we took out the hearing aid from her right ear and masked the ear. This means that the audiologist inserted a small bud in her right ear that made white noise. Because of the white noise in her right ear, she would only hear out of her left ear (otherwise, sound that is meant for her left ear could also be heard by her right). The audiologist then played some sounds to see how A would respond.
No response.
The audiologist turned up the volume. It was loud. In fact, the sounds were so loud that she asked me if I wanted a headphone for myself to block it out (I declined, although it was loud enough to hurt my ears).
Still nothing. Nada.
I sat there, with A in my lap, quietly crying. This test showed that there was NO hearing in her left ear, not even at a profoundly deaf level.
Again, I'm not surprised. We've known she was deaf in that ear for a long time. In fact, when she first failed her hearing tests in the NICU we were told that she was deaf in both ears...so the fact that she is aided to normal hearing in one ear is a blessing that I don't take for granted. And apparently she is hearing all parts of speech, something that we were concerned with, so that makes me extra happy.
Yet it's still hard to be confronted with.
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I wonder sometimes if we don't go to the place in our minds of how we'd feel if we lost hearing in one ear and how hard that would be. But for A, this is her normal, she doesn't know she hears differently than you, J or D-that knowledge will come later and there will be processing of that, but for now this is just normal. I know, as mothers we want to protect them from difficulty and when we can't it is so hard to accept, I'm sure I would struggle and shed tears the same as you.
ReplyDeleteI know it is hard, but all the more reason to celebrate what she DOES have------a lesson for all of us, I think.
ReplyDeletei have never commented or blogged. in fact, i am not sure if this is even getting to you. i really would like to be able to email you about my 2 year old son. he has so many of the same issues as your daughter. most importantly, no semi circular canals. no doctor seems to know much about this. apparently it is quite rare. it is a miracle that i found your blog. i have spent endless hours on the internet researching this. i would imagine it is not the right move to include my personal email in this comment. please tell me how i can talk to you about this. will my son ever walk normally?
ReplyDeleteok i see it worked! so my son is also profoundly deaf (so they say) in his left ear and mild loss in right. he wears hearing aid in right only bc he was fussing more when we had both on. plus he is speaking and learning so it is obvious to us that he hears enough from his right ear (even without his aids). he has astigmatism in one eye but the dr said it can go away by the age of 3 so he is not concerned right now. he also has a coloboma in one eye but it is small and on the posterior of the eye and does not affect his vision. i will retest in a year. otherwise his eyesight is fine. he tracks etc.. he has been scoped several times because he was born with laryngomalacia but that has now cleared. he always sounds flemmy/congested but they have not been able to explain this. any thoughts? it's as if he needs to clear his throat. he was late in all the areas as your daughter was, holding up his head, sitting, crawling, walking. he did walk before the age of two (he is now 2.2) but is clearly unbalanced and often falls or bangs his head into things. i could go on and on but i will wit to hear from you.
ReplyDeleteVanessa, please email me at sugarmagnolia70@gmail.com so we can "chat".
ReplyDelete