Wednesday, March 13, 2013

"My Ear Is Broken!"

I sent this email out to the fam on March 4:

So we had some interesting news today! Everything is fine, nothing catastrophic. But it looks like Penelope is just about deaf in her right ear, and probably has been since birth. 

When she had her 4 year checkup, she flunked her hearing test. We waited a month and had her do it again at Abby's next checkup to make sure it wasn't a weird fluke, same results. So we went to the UCSF Audiology Clinic, and they did a 75-minute test on her today. She was, of course, poised and wonderful and a very brave little champ -- the doctor, Dr. Lau, actually said that most kids her age don't have the attention span for the test, but she did. 

They did three levels of testing: they looked in her ear and found no structural damage; they did a second test that somehow checked what was getting through without her having to do anything, and it confirmed that she wasn't hearing with her right ear; and she did a rather long, involved third test that required her to wear earbuds and answer commands into each ear, and also to do the same while wearing something that stimulated her inner ear by feeling rather than sound (?!?!) to see just how damaged the area was.

What the dr. told us was that the mechanics of her ear are fine -- her eardum is intact, there's no fluid. The damage seems to be nerve/cellular damage to the inner ear most likely due to prematurity, either because she was on the ventilator (only for a day or two!!) or just due to the extra stress of those weeks in the NICU. It is not reversible, it is not treatable, but nor is it degenerative. She has absolutely perfect hearing in her left ear (in fact, I noticed she has perfect pitch, not to brag but what can I say, it's true). 

The level of deafness is not "profound," but it is "severe." This clinic does not like to deal in percentages,, though of course I tried to pin them down to one, but what the dr. told me was that normal speaking is 50-60 decibels, and she can only hear in the right ear at 90 decibels. 

Well, but the good news is, she CAN hear in the right ear at 90 decibels, so a hearing aid will work for her, and will be covered under MediCal (most likely). In the past, they didn't bother with a hearing aid for kids who had this kind of hearing loss, but that around 3rd grade they noticed kids falling behind because the extra effort of hearing everything in the classroom finally started to affect their performance. So if she has a hearing aid starting now, before kindergarten, she will not have that deficit, will be able to hear normally as long as she wears it. 

Next steps: she will see an ENT to verify that the damage isn't progressive and get more of an idea of exactly what is wrong, and will have a second audiology screening to verify the results we got today. At the second audiology screening we will also have a hearing-aid consultation and the options will be explained to us. This will happen in early May and Randy will be able to come to the appointment as well (Abe will be in school). 

Eli pointed out that this is no different than finding out she has to wear glasses, and I think he is quite right about that. She's nowhere near deaf or impaired in any way, and if this is the worst outcome of her prematurity, I think we really got off cheap. 

Anyway, wanted you all to know. Penny is VERY excited that she and Grandpa Harry "will match," and is really looking forward to sharing with him about the "ear bud" she will be wearing. Her FIRST question about it was "can I get one that is pink?" and then I explained it to her as being a very small speaker that will help her hear in the ear that is stuffy. She also told me that when she grows up she wants to be "a girl doctor who only does ears," like Dr. Lao. She is a very cool character, and I am very lucky to be her mom. 

Abby is fine, completely un-deaf and having a great time at school. :) 

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