Our daughter Lily Bliss was born in June 2007 with profound hearing loss. At 10 months old, she became one of the youngest in Nebraska to receive bilateral cochlear implants. This blog is the story of our hearing journey and the proof that Life really is Bliss.
We are excited to introduce our son Bodie Graeme. He's a perfect little sweet pickle (as Lily calls him) and we couldn't be more thrilled. The details...
What about the Name?
Bodie is a name we love. It's happy, sounds good with Lily and doesn't come with a lot of stereotypes or rhyming words. It's also not in the Top 10 most popular names. Of course when we picked LIly, the name was not very popular and now it's likely in the Top 20. We were going to call him Bodin, with Bodie for short, but why not just go with the nickname. Bodin can be used for the serious situations.
Graeme (sounds like Graham) is a nod to Graeme Clark, one of the first inventors of the multi-channel cochlear implant, and Alexander Graham Bell. Two people who changed the course of history for our family.
In my reading about Professor Graeme Clark of Australia, they said he was called Crazy Clark, because his goal since the 60s was to help deaf people hear. His colleagues doubted him and thought the goal was unreachable. This story is a good daily reminder to me to believe and reach for the impossible. Never be detered if that is your goal and always say YES, even though it's much easier to say NO.
I hope this name will give that determination to Bodie. I know Lily's already got it. Yesterday she was determined to go outside in 50 MPH winds and snow and fly her kite. I said NO, it won't work. She did it anyway, and wouldn't you know...the kite flew...twice.
Birth Story
The Birth Story is quite uneventful, in a positive way, compared to Lily's birth. With a scheduled C-Section it was peaceful, planned, no drama, no NICU, and no tears. Well, maybe a few tears of joy. Everything was calm and quick. Loved it.
When Lily first met her new brother, she came in, climbed up on a chair to see him in the bassinet and introduced herself. "Hi Bodie, I'm your big sister Lily." So sweet.
Having another child
For years we never thought of having another child, because we didn't want to take our focus off helping LIly succeed. At some point, as Lily's abilities have skyrocketed, we felt that adding another child to our family would only enrich our experience and Lily's life. Hearing or not, we were prepared to take the hearing journey again, if need be, and we would meet every need of this child as we have for Lily.
Nebraska's Newborn Hearing Screen
In Nebraska, the Newborn Hearing Screen is a state mandate (with no enforcement). Today, approximately 99% of all babies born in Nebraska are given the hearing screen, with about 50 babies annually having some sort of hearing loss.
About 50% of the hospitals, including ours, are using ABRs for their initial screens. ABRs have a much lower refer rate (4%-5%) than a tradition OAE (8%-9%). A refer rate means "failing" the test. Failing could be for other reasons, besides hearing loss, like fluid in the ears. A reduced referal rate means a lot fewer parents have to go through the emotional journey of understanding if their baby can hear, reduced cost and reduced use of limited resources. Bodie passed.
Is there a difference?
With a newborn baby, it's extremely difficult to tell if the baby is hearing. Especially for first time parents, if you are not watching for a reaction to sound, you just might miss it. We see Bodie and LIly with very similar baby behavior, but you can see that Bodie quiets to the Shhhhh sound and reacts to many noises.
I have noticed that we've gotten used to making lots of noise while Lily sleeps. Unfortunately or fortunately, gone are the days when we could turn up the TV or music, bang around, cough or vacuum. Restful sleep is a definite advantage for LIly, espcially when Bodie is wide awake in the middle of the night.
Language
I am very interested to watch Bodie's language develop. We've been trained by some of the best language pros in the country, and talking everyday all day and creating good listening environments is what we do.
A few Lily quotes
"It's great to be a big sister. " And this morning, "It's hard to be a big sister. I don't get any attention."
Lily visited Santa this year on the first day he arrived. A little shy at first, Lily informed Santa she would like a pogo stick and a pink sled. She later remembered she forgot to tell him a bike (already purchased), so she followed up the visit with a letter that she wrote (Dear Santa I want a bike Love Lily.) She said the period was so Santa knew the letter was over.
When Santa asked if she's been good, Lily informed him that she had been a very good helper that morning putting up all the Christmas decorations.
Communication was easy. Mom and Dad just stood back and watched the magic happen. So much to be thankful for this year.
Lily's preschool class has been working with an artist on screen printing. Here Lily is with the artist describing her masterpiece (flower and bird).
All kinds of new vocabulary was included like squeegee, silk screen, color theory (red and yellow make orange), etc.
Lily's teacher gave the artist the FM, which made listening easier for LIly when the artist discussed each child's artwork/t-shirt design.
Exposure to different experineces and language is so important. This was a unique one.
Halloween has become a wonderful week-long celebration this year with many parties and events to attend. Lily's costumes have included both a puppy and a turtle. Mom's preference is the turtle because there is nothing over her CIs.
We also attended a family art night where we were given a clay pumkin and then were encouraged to transform it into anything. Thus the creation of the Halloween Fish, Black Cat and Witch. Any guesses as to who did which one?
Recent article about research at the University of Wisconsin shows significant language progress after two cochlear implants.
During our recent trip to participate in the WI research, we got to meet Christi who is quoted in the article. (see picture below) Very fun to meet the next generation of practitioners who are passionate about serving kids with CIs. In this photo, Lily and Christi were teasing each other about who would win the Nebraska-Wisconsin Football game.
An ongoing study of 45 deaf children who had two cochlear implants finds that their language skills are within the normal range..."It's a huge success to see these children making such strides in language acquisition," says Christi Hess, a Ph.D. student in communicative disorders...Many, after as little as one or two years with the implant, have language scores within the normal range, especially those who got the implant before age two....It's known that implants made at a younger age deliver results more quickly, and that a second implant helps children both locate the source of a sound and understand speech in a noisy room. But until now, it was not clear if the second implant would improve understanding of spoken language. "The most exciting finding is that having two implants does correlate with an improvement in receptive language," says Hess.
