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Hearing loss--update

st.augbridest.augbride member
in Special Needs
Hi everyone, I haven't been on this board in a while but I wanted to post an update on my dd with hearing loss since I got a lot of great advice and information here when I posted. Basically, at 9.5 months my dd was diagnosed with moderately severe-severe bilateral sensorineural HL. Since that time, we've gotten hearing aids on her and seen a ton of docs and audiologists. Dd is now just 13 months old and as of this week now has a cochlear implant! The surgery went so very well and I can't wait to have her activated in a month. It turns out that one ear was better than the other and all the benefit from the aid was really coming from that one ear, so we worked to get a CI in the other as quickly as possible. They also did a sedated ABR prior to surgery and it turns out that her better ear is a little worse than we thought, tracking also in severe to profound, though about 10-15db better than the implanted ear which is why the aids worked better for her in that ear. Still, we could be looking at a bilateral implant down the road. We will focus on this one first though since she does seem to benefit from the aid in the other ear. She's been doing great with auditory-verbal therapy and even with just the aids had already built a decent receptive vocab, started differentiating her vowel sounds, saying 'mmm' when we do and for food, and responding to all ling sounds. I can only imagine what she'll do when activated! I can't wait to just get going. The other thing that is new and came up is that in the routine cardiology screening for hearing loss it turns out she had prolonged QT intervals, which could be related to the loss and could be separate. We are undergoing genetic testing to find out and hoping it is separate (as the version that's related is more severe for the cardiac aspect), but for now she is on beta blockers for that and we are all getting tested too since one of us most likely has it too then. I'm just grateful that was uncovered prior to surgery so they could take extra precautions. Anyhow, that's the update for now!
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Re: Hearing loss--update

  • kcisthebombdotcomkcisthebombdotcom member
    Great news! I hope she continues improving.
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  • ToastieSimonsToastieSimons member
    I'm so glad the surgery went well!  I'm so glad things have been going better for you!
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • Assembly_ReqdAssembly_Reqd member
    Glad to hear your journey has a more definite direction. I always feel better when there is an outline of what happens next. Good Luck!
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