Alexander and Lily

Alexander and Lily

Thursday, October 21, 2010

Alexander's Hearing Loss and a Lily Story

Lily's baby brother, Alexander was born almost 8 weeks ago so I've been a little busy and my blog has suffered. Lily's hearing loss is caused by a mutation in the Connexin 26 gene which gives us a 25% chance of having a child with hearing loss with each pregnancy. We knew this before we became pregnant with our second baby. I really thought during the whole pregnancy and even when he was born that Alexander could hear. However, he did not pass the newborn hearing screen in the hospital and the follow up ABR confirmed that he too has hearing loss. Alexander's loss isn't as severe as Lily's at this time. He responded to 50 dB whereas Lily responded to 95 dB. This means that Alexander's hearing loss is moderate. He can hear that we are talking to him, but our speech isn't clear. It has been described to me like this: if you were to lose part of your hearing today and you had a 50 dB loss, you would hear that someone is talking to you but you wouldn't be able to make out what they were saying. So right now he only needs hearing aids which he will get next week. However, there is a 30-40% chance that his hearing loss is progressive and he will lose it completely over time. To quote a line from Grey's Anatomy, "biology sucks." I love my babies just the way they are, but I feel like "here we go again." As I've shared with many people, most days I don't even think about Lily's hearing loss anymore. She is hearing and speaking so well. I felt like we were just cruising with most of the hard work behind us. Now we are back at the beginning with Alexander. I know we'll get through this again and that we just have to play the hand we are dealt. Right now I'm thankful for the hearing that he does have. I'm sure Alexander and Lily will be very close because of their shared disability.

So since I will now be writing about the hearing journeys of both my babies I needed a new blog name. The new blog is "That's Just the Way We Hear" and the new URL is I will no longer be posting to So update the new address for those of you who follow and join us on this new journey to hearing.

I'll leave you with what is NOW a funny story (not so much when it happened). We all have our stories of where we've found our kids' CIs. A few nights ago Lily and I were downstairs doing laundry. She was out of my sight for a while and when she returned she handed me a clump of dirty cat litter. Gross, right? It gets better. I scold her and tell her it's dirty, etc. She walks away and returns holding her hand out with one of her processors in it saying, "Uh oh mommy, my ear." I take the processor only to find that it is CAKED in cat litter. Apparently she had taken the processor off and covered it with cat litter much like a young child would cover a TOY with SAND. Oh my! I'm going to have to keep a closer eye on her. :)


  1. I noticed Alex will be getting hearing aids soon
    you can try Oticons for starters since I grew up with them (started wearing Oticons in January 2005)
    you could get the Oticon Safaris which is the same one that I will be switching to very soon! (my current one is 5 yrs old and backup sets had died)
    and for Alex, good luck on the high tech hearing aid journey!!!!!!

  2. Once again I can say.....been there, done that. Just think of all the great things you already know to do with Alexander because of Lily.
    I look forward to hearing how Alexander does with his hearing aids.

  3. Alexander is a lucky little boy to have such great parents, who are so well educated in the world of hearing loss. But I am very sorry for his diagnosis. I'm sure, as much as you know everything will be OK, that it has been hard. Know we're thinking of you.

  4. I've been watching for an update and first of all, CONGRATS on your baby boy!!! He is beautiful! It looks like Lily is enjoying being a big sister, too. So cute!

    I'm sure you are saddened and angry with Alexander's diagnosis. It must have been absolutely awful waiting on the results of the hearing screening in the hospital. I'm so sorry that you have to go through this again, but as Drew's Mom said, he is incredibly lucky to have you as parents. You are strong, informed, and well-equipped to take on this challenge. And you're right, although it sucks, you have to play the hand you were dealt. That doesn't make it fair or any easier, though. Please know that I am thinking about you guys as you start this new journey. I can't wait to read about your little man as he grows and gets his hearing aids!


  5. Congratulations on your beautiful baby boy! I love the name too!

    I'm very sorry to hear about his diagnosis. I can only imagine what you're going through right now. He's a lucky little boy, and he's going to have a great outcome because of all the wonderful knowledge you have. I'm sad with you today though. Thinking of you guys...

  6. I've been anxiously waiting to see an update on your family's newest addition! Congrats and welcome to the world baby Alexander! He is just precious.

    I too, am sorry to hear about his diagnosis. I can only imagine how you felt when you heard the words once again. My heart goes out to you all. He's one lucky little boy to have such proactive parents who are already so immersed in the world of hearing loss and an amazing big sister who will be teaching him each step of the way. Sending huge hugs and smiles for all that's new in your world!