Monday, March 30, 2009

Meeting Drew and Lily's Stinky Ear

Last weekend we met Drew and his family. Drew is also profoundly deaf in both ears and he received his cochlear implants when he was 8 1/2 months old. He is now 2 1/2 years old and he hears and speaks beautifully. It was so encouraging to see Drew interact with us, his parents, and his older sister. It made me so anxious for the day when Lily will be able to hear. I can't wait for the day that she will hear me tell her I love her and sing lullabies to her. As I research cochlear implants, I wonder how Lily will hear music. What will it sound like to her? I'll probably never know the answer to my question, but I did get to hear Drew sing a fabulous rendition of "Twinkle Twinkle Little Star" last Saturday. That was something I thought Lily would never be able to do...sing. Drew is definitely a shining star. It was so nice to be able to talk with another family that knows exactly what we're going through during Lily's diagnosis and now waiting until she is eligible for CIs. Waiting is one of the hardest parts of all this. We know Lily is deaf and we know how we can help her to hear, but we have to wait. Reading the blogs of families who have children with hearing loss and emailing/talking with these families has truly been my therapy. These families who have "been there" and now have children who can hear, have put a peace and hope in my heart that I may never have known. Thank God for the Internet! I most likely would have never "met" these families without it.

On a different subject...Lily's ears have recently started to smell pretty bad in the evening when I take out her hearing aids. Even after her bath, during which time I use a damp cloth to wipe behind her ears and inside her ears to keep dead skin from building up. I know the smell is coming from inside her ears because the ear molds smell really terrible also. The molds and her ears smell kind of like a sweaty foot. I wonder if the smell is caused by sweat that gets trapped in her ears while her hearing aids are in all day. If anyone else has experienced this, please comment. Her ears have just started to stink in the last few weeks. I'm hoping it will get better.


  1. That's so fun that you got to meet Drew and his family! Blogging has really been my therapy too. I don't know where I'd be without all of my blog friends. 20 years ago, our lives (and our deaf children's lives) would have been soooo different. Sorry, but I don't have any experience with smelly ears. Do you clean out the earmolds and let them dry overnight? I'm not sure if that would help...

  2. I do clean the molds with special cleaner and let them dry overnight. Lily sweats more than any other baby I've known...maybe that's it. Thanks for checking in.

  3. That's so awesome you got to meet Drew and his family! They were one of the first families I contacted, almost one year ago, about Aiden. I felt so lost and Drew's mom (along with a few others I found on the internet) really helped ease my pain and made me realize everything was going to be okay. The waiting game was the hardest part for me too. It seemed like everyone else was getting surgery and then activated and I was so impatiently waiting our turn. It went fast, yet seemed to take forever! Before you know it, Lily's days of hearing will be here too! She's so lucky to have you!

    Sorry ... can't help with the stinky ear thing. I've heard though, that some babies have more of a wax problem than others ... maybe she has a wax build-up inside that you can't see? Good luck with this!

  4. Hi! I found your blog on Drew's blog :). Lily is a doll...SUCH a cutie!! I have bilateral CIs but when I had my hearing aids I would occasionally get FUNGUS infections that would smell just awful. You might want to check with her doc to see if that might be the case...they don't usually go away on their own. It's a really common problem...especially with a sweaty baby. Moisture gets in there and before you know it you have an itchy, icky ear. Hope you find a solution soon!
    I am adding you to my Google reader...I am anxiously following Lily's story! :)

  5. Hi,
    I found your blog through Drew's. It is great that there are families out there that understand what we are going through. Drew's mom will be a great help to you. I am a mom of a hearing aid wearing 8 year old boy(Jared) and a 6 1/2 year old bilateral CI wearing girl(Allison).
    While we are little farther down the CI path, we understand where you are, it has only been 4 years since Allison had her 1st CI, but at times it seems like just yesterday. She is in a typical K class and is doing great.
    Feel free to check out our
    Feel free to contact us if you have any question. We live in Columbus, where do you live?

  6. Just want to say hi...
    Keep on blogging and telling us how Lily is doing..

  7. It has been great for me to meet and Blog with other families who know the score. I am friends with a 19 year old CI user, only uni though. But he and I swap music all the time. He has a Blog
    I am sure he would be happy to talk to you.
    I found his views really usefull. It is nice to talk to parents but you dont get a view of a user of a CI. The other children I know with CI's are not quite 6 so while lovely cant really tell me what it is actually like. So it was nice to connect with Gav and find out.
    You could also follow my Mary's site if you like She was implanted Last June. The waiting was a killer. So glad it is done now.

    PS I waffle sorry, but you Lily is so cute.