Tuesday, September 22, 2009

So Much to Update

Lily has been doing wonderfully with her CIs. She hardly ever tries to take them off, which we are sooooo happy about. She leaves them alone much better than she did her hearing aids. The only time she really tries to take them off is when she is trying to get our attention (because she knows she'll get it immediately) or when she is tired. For the first two weeks she wore the CIs with the babyworn option (the BTE controllers clipped to her back). She is wearing the babyworn option in the top picture. We didn't use the snugfits because we didn't like the way it was bending her ear down. So we put a velcro dot on her processors and a velcro dot on her headbands and we just stuck the processors to the headbands. Since none of the weight of the CIs is on her ears she can wear the BTE controller attached to the processor (all one piece) and her ear still doesn't get bent. We love this way because now we don't have to mess with cables hanging everywhere when we need to change her clothes. The next pictures show how Lily is currently wearing her CIs.

We had our first sound booth test since Lily's CIs were activated. She did great! She responded to sound at 20dB across all frequencies. Yay Lily! We think this is awesome for having been activated only 3 weeks ago. It was so cool to watch her localize as the sound switched speakers.

Another big event for Lily this week is taking her first steps. She has taken one or two and a few times, up to four steps. Today she walked a short distance across the room, taking about eight steps. Lily is growing up so fast and so much is changing for her right now. The world is just beginning to open up for her.

Now for bad news. . .insurance. We already knew our insurance was denying her claim for the surgery since she is under 12 months. Now they are also denying our audiology appointments because, in their words, "Cochlear implants for members less than 12 months of age is considered investigational and therefore diagnostic analysis of bilateral cochlear implants is being denied as investigational." . Drew's mom was worried this might happen to us. However, I thought (and still think) it best for Lily to have access to sound as soon as possible. This will just be another battle between the insurance company and me. Insurance won last time. I'm hoping they don't win this time. We're going to appeal the decision and our doctor and audiologist are going to conduct a peer consultation. If we don't get anywhere with that, Cochlear's Insurance Support will help us file a second appeal. Wish us luck!


  1. Hi, I'm a blog lurker, but I just had to come out of the shadows and say WOW, great idea with the headbands. Keeping the processors off her little ears but still on her head.. awesome.

  2. Good luck with the insurance battle! I would have thought it was over. Sorry to hear about that!

    20 dB? 20 dB! That's amazing! Wow, I don't even know what to say. Congrats!

    I can't believe she's walking... she's not even 1 yet!! I can't imagine... Lucas walked so late!

    Love the headband idea! So glad it's working for you, and that she's leaving her processors alone. Brilliant!

    Give that girl a hug for me!

  3. that headband idea is awesome. I think I'm going to try that. My daughter is a tiny 7 month old, and the cables aren't working for us either.

  4. Love the headband idea .. too bad it wouldn't look cute on Aiden! haha I'll say prayers that everything works out with insurance, I think it's absolutely crazy how each insurance company is so different. I can't stand how they have to fight every little thing. Um ... and hello ... 20db?!? That is friggin AWESOME! Lily is loving to listen! Way to go Lily and mom and dad!!!!

  5. Just wanted to update that I tried the headband idea. The velcro dots wouldn't work for us, but I made a headband with two layers at the back and just slip the CIs in. It works fabulously well. They seem safe there, but I'll get a clip like the Oliver clips when she's moving more. Thanks again - I think you've saved my sanity.

  6. Love the headband idea. I really wish they had the babyworn when Allison was implanted, she had to wear this big pack like thing, but at least she was hearing.
    Wow, 20db, that is amazing. She is doing great!!
    Will say a prayer that you are able to get the insurance issues worked out. I know how hard it is to have to deal with insurance companies along with everything else.

  7. Congrats on...
    *the headband idea, might just try it
    *20db, awesome, you know she's hearing everything
    *the walking, huge milestone conquered!!
    Good luck with the insurance company. We are thinking of you.

  8. I LOVE the headband idea! Very creative.

    Lily is a doll!