I got the genetic results back Monday for Ciaran and Calleigh. They are both carriers of connexin 26 and have one of the genes. It takes two genes to be affected. Cormac has both so he is deaf. I am having mixed emotions about the test results. It's awesome for Calleigh. She is not showing any hearing loss at this time so we are confident her talking will come in time. As for Ciaran, I don't know what to say. Why does he have hearing loss? Not knowing is difficult. I am hopeful whatever it is remains the same and it will not be progressive. With connexin 26 it could have been progressive loss. This is a positive but the not knowing why is what gets me.
Ciaran had an MRI on Wednesday to check out the structure of his ears. This requires anesthesia. He did fine with the "sleeping potion" (his words, not mine). He just wanted to get a hot dog off the hot dog truck when it's over. A small price to pay for a scared 5 year olds happiness. He wasn't awake 5 seconds and he asked for a hot dog. I have to say when I went into recovery and saw him still out from anesthesia it made me cry. He looked like such a big boy all of a sudden. I just counted the minutes until he opened his eyes.
His hearing aids will be in next week. It's a new adventure for us. I have no clue about hearing aids. Hearing aids and Cochlear implants are totally different. I am pretty well versed on the implants but am clueless with hearing aids. I have lots of learning and lost of questions. Luckily, one of my blog followers (emmaverdona) wears Safaris and I know help is available (how do you listen to Ipod touch???) Cormac just uses regular ear buds or headphones but that's not possible with hearing aids. A friend of mine also has a child wearing safaris and she could not be more knowledgeable on hearing aids.
So, the mystery continues. Maybe the MRI will reveal something but I doubt it. We should have results on Friday. Further genetic studies could be ordered.