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!
Lily signed her first word on Tuesday. She signed more when she wanted me to play her gobbling turkey I got her that day. She did it about 5 times and then wouldn't do it anymore that day. I couldn't get her to sign it the rest of the week either so I thought maybe she wasn't signing but just clapping since that is a fairly new thing she has been doing. So today when I was feeding her, I said "Mmmmmore," before giving her another bite (we're working on the mmmm sound). After hearing me say "mmmmore" she signed it! I didn't even sign it. Yay for Lily! I have been saying it and signing it all week though. She continued to sign more as well as say "mmmmm" during the rest of lunch. It figures that just as we're ready to stop signing and focus completely on oral communication, she starts signing. This makes me question our decision to be strictly oral. If she can communicate with us now, I want her to be able to. We may continue using a few signs for basic communication. Signs like more, eat, drink, hurt, milk.
Lily definitely wants to communicate with us. She has been hearing for a little less than 2 weeks and she is already imitating the ahhh sound and the mmmm sound after she hears me say it. Our journey has just begun, and we are so excited for the new things Lily will learn and do each day.
Lily's CIs were activated yesterday. Yesterday was really the first time she has heard anything. We have been waiting for this day since December 4th, when we first found out our baby girl is deaf. She didn't respond to my voice so much, but she did seem to respond to her daddy's voice. It was really exciting!
The audiologists said Lily did really well. They told us that most babies cry or are irritated, but not Lily. She sat really still when she was listening to the series of beeps from the computer. When she heard her daddy's voice, she turned to look at him and smiled. It is so precious.
The sounds that Lily is hearing right now are really soft sounds. We will change the program each day so that she will slowly hear more and more. We don't want to overwhelm her by throwing her into this noisy world after she's lived her life in complete silence for 9 months.
Here are a few pictures from Lily's "Hearing Birthday." You can see what the external equipment looks like. She has brown coils (the magnets on her head) and pink processors (the piece she wears behind her ear). The pink things clipped to her back are the controllers that allow us to change the programs and adjust the volume and sensitivity. This will eventually connect to the processors and she will wear it all behind her ear once her ear is big enough.
She has done a pretty good job of leaving everything on. Sometimes she'll grab at the processors so we just put her pilot cap back on and she leaves everything alone. The pilot caps have been the best investment for us. She wears the white Hanna Andersson pilot cap and the white SilkaWear cap. Since the caps are white, we can still see the blinking red lights through the material of the cap. The blinking lights let us know if sound is getting to the microphones on her processors. If the lights blink slowly, she isn't hearing; if they blink quickly, she is hearing.
Lily tolerated Program 2 just fine today, so tomorrow we'll turn her up to Program 3 and she'll be hearing a few more sounds than she could hear today. Her journey into the hearing world has just begun!
Lily was born with profound bilateral sensorineural hearing loss (deaf in both ears) to two hearing parents. She is now learning to listen and hear with the miraculous technology of cochlear implants. This blog was created to update our family and friends on her journey to the hearing world.