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 www.thewaywehear.blogspot.com. I will no longer be posting to lovingsweetlily.blogsot.com. 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. :)
This post will be repeated on the new blog at www.thewaywehear.blogspot.com
We got the new compact rechargeable batteries for Lily's CI processors so we thought we'd try having her wear them with wig tape instead of always having her wear the headbands (which we still love). The wig tape worked beautifully and stayed on all day. We ran into a problem when it was time to take them off. The tape stuck to her little baby hairs and pulled them out when I took the processor off of her ear. She screamed and cried and hated it. This makes me not want to utilize this option. For those of you who use the wig tape on your toddlers, how do you keep from ripping their hair out?
Here's Lily wearing the processors with the wig tape...no headband.
We celebrated Lily's first hearing birthday on Tuesday. It's hard to believe that Lily heard our voices for the first time one year ago. Time flies. We are so proud of the progress Lily has made over the last year. Our deaf baby girl can hear and speak...we are so blessed! Enjoy the video.
It's funny how many days I don't really think about the fact that Lily is deaf that much anymore. Obviously I think about it every morning when I put her CIs on and each evening when I take them off for bath and bed. However, most of everyday she is wearing her CIs and with them on she seems to be hearing and speaking as well as, or better, than other hearing children her age. So it can be easy to forget that she has a disability.
In the past few weeks though, I've been thinking a lot about Lily being deaf. First I read this blog post about a little girl wishing she weren't deaf and it made my heart ache. What will I say when/if Lily tells me she wishes she weren't deaf?
Then yesterday I had an experience with a child who has a different disability, but it made me think of Lily immediately. A little girl in a wheelchair was crying because she couldn't get in one of those big blow-up bouncy obstacle course things. Through her tears, she was telling her dad that she wished her legs were as strong as all the other kids' so she could play with them. It made me think of a time in the future when Lily might wish her ears worked like all the other kids she will know. Will she wish she could hear while going down the plastic slide on the playground? She has to take her CIs off to go down plastic slides because the static electricity could scramble her programs. Will she wish she could hear in the swimming pool and in the bathtub? At slumber parties will she be afraid she'll miss something if she takes off her CIs to go to sleep?
And then today I read this blog post that directed me to a video of some teen CI users. The teens in the video are advocating for themselves and telling the world how they hear. It touched me. I hope that Lily will have as good an attitude about her hearing loss as the teenagers in this video. You should watch it.
A few weeks ago Lily went for a soundbooth check at 6 months post activation. She responded to speech at 20 dB in her left ear and 15 dB in her right ear. She seems to be doing great. Her newest word is "ball." Cochlear implants are truly a miracle.
Here are some pictures of Lily and mommy and Lily and grandmommy with the snow princess Lily's daddy and our friend, Jason built.
Cute story. . .Lily is with me at the elementary school where I teach quite a bit. Therefore, many of the kindergarteners, first graders, and second graders see her often. A few days ago someone asked who the baby was. One of the second graders responded, "Oh that's Lily, the school baby." My sweet Lily, you are loved by many.
Lily keeps adding new words to her list of spoken vocabulary. Of course the words aren't perfect...probably only those close to her would understand, but she is definitely talking to us. Her new words are baby, thank you, belly, eye, book, duck, kitty cat. Yay Lily!
I can't believe my deaf baby girl is actually talking. Four months after her CI activation, Lily is saying 4 words pretty clearly. She can say meow, more, moo, and ho ho ho. She approximates several other words as well. When we ask her what the bunny does, she says "h h h" for hop hop hop; she says "uh uh uh" for up up up when she wants out of her car seat or out of her highchair or she wants me to pick her up.
Her receptive language is growing also. I think she understands a lot more than we give her credit for (I think hearing babies do too). We know that she understands "all done" because she signs it when we say it or when she sees that something is all gone. She waves when we say "bye bye," she gives us a mean look when we say "no," she gives kisses when we ask for them, she runs in the kitchen when we ask her if she wants to eat.
We got some video of her saying "more" and dancing on Christmas morning. Enjoy! Sorry for the poor quality on the dancing video.
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.