I finally talked to the audiologist who tested Lilly's hearing after her g-tube surgery in early May. She confirmed what the ENT told me briefly - that Lilly does not have great hearing. (More than half of the children with Trisomy 18 do not have perfect hearing.)
Lilly's right ear responded better than the left. Hearing in the left ear is "moderately severe." The audiologist suggested that when we talk to Lilly we talk towards her right ear.
Lilly's ear canals are very very small and the doctors could not even see her ear drums. They did a special test where they by-passed the ear canal and middle ear and went to the cochlea. That response was actually much better. That means that the sound gets lost along the way in Lilly's ear.
We're to meet with the audiologist and ENT at some point to discuss things further and see what Lilly's options are.
Good news though is that we know Lilly does hear us. She turns her head towards our voice when we come in a room. And since she has noisy siblings - one of which is often banging on the piano - it is probably not that terrible that she doesn't hear perfectly. (Not that I want her hearing to be compromised, but I'm sure you know what I mean!)
"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him." - 1 Corinthians 2:9
lilly dearest,
ReplyDeletemaybe we can learn sign language together.
mah mah's hearing isn't that great anymore
either.
Oh, Lilly,
ReplyDeleteI'm sure you will still respond in your left ear. :)
Love,
T.