Alexander and Lily

Alexander and Lily

Saturday, October 30, 2010

Wednesday, October 27, 2010

Alexander's Hearing Aids

Our ENT called and confirmed Alexander's diagnosis. His hearing loss is also caused by Connexin 26. It is fortunate that he has some hearing, but as I wrote before, we'll have to keep a close eye on him as the hearing loss can be progressive.

Yesterday Alexander got his hearing aids. It was really cool to watch him react to sounds in a way he never has before. He is turning to sounds a lot more now. When we were in a group of people, the noise was too much and he started pouting and then crying. He is going to have to go through an adjustment period. This is all very new to us because Lily's hearing aids did nothing for her.

With the good comes the bad. We are again immersed in a world of squealing from the hearing aid feedback. We are also struggling to keep the hearing aids on Alexander. He isn't pulling them out yet, they just keep falling out. I'm guessing the ear molds are already too small even though he just got them yesterday. The molds were made almost 3 weeks ago.
Here is Lily pointing to her baby brother's new ears.
Alexander's hearing journey has begun!

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. :)