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.

Pilot Caps

Lily has reached the age where everything she gets a hold of goes in her mouth, including her hearing aids. She pulls her hats off and her hearing aids out. At the suggestion of two moms who have experienced hearing aids on a baby (thanks Jenny and Tammy!) we are trying Hanna Andersson pilot caps. These hats are made of thin organic cotton and tie under the chin. They have been wonderful! The hearing aids stay in Lily's ears and out of her mouth!

Here are some pictures of hats that don't tie under the chin. They didn't work as well.

Here are some pictures of the Hanna Andersson pilot caps. Love them!

Lily's First Sound Booth

Yesterday Lily had her first sound booth check to find out if she is hearing anything with her hearing aids. It's hard to tell with babies as young as Lily is, but we think she responded to sound at 80 dB. Not really great, but it's something. When we found out she was deaf, she was responding at 95 dB...so that's a 15 dB gain. Still no where near the speech banana (40 to 60 dB). Her audiologist turned her hearing aids up in hopes that we might see some more responses to environmental sounds (sounds in her everyday life). After her appointment we went to eat at Genji's Japanese Steakhouse. They bang a drum really loudly when it is someone's birthday. There was a birthday at the table next to us and the staff walked RIGHT by Lily, banging on that drum. No response. She didn't turn to the sound or even stop sucking her bottle. She did, however, notice the fire on the grill every time. She is still very much getting her information about this world visually.