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.
6 comments:
If you have big enough headphones (the old style that cover the ear completely) he can listen to his ipod just fine! That's what I did, until I got a pair of hearing aids with Bluetooth functionality. The hearing aids came with a device that can send sounds straight to my ear when plugged into something like speakers, or, if the ipod has Bluetooth you can sync it right to the aids. It's awesome.
Good luck as you start this new journey! :)
for me, I listen to my ipod with the streamer which is a remote control that will let him listen in the ipod and audio sources
also has bluetooth and will let you recharge the battery on the computer.
look here for yourself
http://oticonusa.com/Oticon/Consumers/Products/ConnectLine/ConnectLine_System.html
there's an audio jack that comes in with the streamer he'll need to use it to listen to ipods and audio sources :D
It must be tough having to go through all of this a second time, although with hearing aids instead of CIs. I hope you are able get answers as to what caused Ciaran's hearing loss.
As for iPods, Music Links are popular with hearing aid (as well as CI) users.
http://www.tecear.com/Music_Link.htm
Many newer hearing aids also have "streamers" that are able to wirelessly connect to phones and MP3 players. Hope this helps!
Awwww, tears...
Sending good thoughts and prayers your way!
Glad you have some great resources regarding hearing aids and hoping that will help this "transition" be a bit easier.
I hope you all find answers to your questions! Keep us posted :o)
definitely ask about the Connect Line for and if it's compatible with the Safaris (it should be)... it'll help him listen to ipods and the television!
http://www.oticonusa.com/Oticon/Professionals/Pediatrics/Products/Safari/ConnectivitySafari.html
- stephanie (audiologist)
Children's Hospital of Philadelphia has a fantastic resource guide for hearing aids...
http://www.chop.edu/export/download/pdfs/articles/communication-images-guide2childs-hearing-aid.pdf
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