Life is Bliss - Lily's Cochlear Implant Journey

Memories

I met a family the other day of a 10-month old with hearing aids.  This adorable little baby girl looked just like Lily at that age.  The baby only had a mild hearing loss, but her little hearing aids were neatly taped behind her ears.  The mom said she found double-sided tape in the intimate apparel department. Very clever. We had always used the toupee tape from Sally's Beauty Supply,

I'm not sure why her aids caught my eye, but Lily's Dad saw the family in the parking lot and the baby caught his eye too.  Maybe its "Ear-dar."  The never ending quest of searching for others with hearing aids and CIs. 

As Lily is getting bigger, her CIs seem to being getting smaller.  When she was so little, those hearing aids seemed to take up half her head, even though they were very small compared to hearing aids of years past.  Maybe I am getting used to seeing the CIs on her head now or maybe as her little wispy hair is growing in, the CIs don't seem like they are so prominent. 

One of the most memorable things another Omaha Hearing School parent said to me very early on, when it seemed that Lily was all hearing aids, was, "When we see your baby, we see your baby and yeah she has hearing aids.  We don't see her hearing aids and then see your baby."  It is a fine distinction, but it really made a huge difference for me to know someone was seeing her that way.   Maybe a mini lesson for a grieving parent. 

Seeing this 10-month old baby brought back so many memories of when Lily was little and all that we have been through.  And then I have to laugh because Lily was that little just eight months ago.  My how things have changed. 

Passing out Gifts

Lily served as Santa's little helper this year by passing out the gifts.  She'd pick up a gift and we'd tell her, "Give it to Uncle John, Give it to Grandma, Give it to Grandpa."  She had no problem understanding where to take the packages.  What a wonderful Christmas Gift.

Snakes and other Sssssss

During a graduation party held at the Nature Center, we were entertaining Lily with snakes, both the stuffed kind and the live bull snake varieties.   We asked, "What does a snake say?"  And Lily responded Sssssss.  Yeah another Ling sound down. Lily loved the snakes.  I, on the other hand, could do without them.  Lily also uses the Sssss sound for the water coming out of the faucet.  We still need Shhhh and maybe Ooo to complete the six Ling sounds.   

Lily is also whispering and singing, on request.  She whispers when she puts the babies to sleep and she sings both when we ask and when she is listening to ABBA, of course.

As I look ahead to next year, I can't even imagine what Lily will be saying or doing.  I'll predict she will be saying Merry Christmas and I Love You, asking tons of questions, singing with actual words, and talking non-stop.  Think positively. 

Yell It Like You Mean It

A few days ago we were at Noodles having lunch.  A lady came up to us and said, "She is the cutest baby."  This happens quite often, so we said thanks and finished our meal.  When the lady left she came back and said "Bye Bye" to Lily.  Lily said, "Bye Bye" and waved.  The lady walked to the middle of the restaurant, turned and waved again.  Lily responded with a wave and hollered, "Bye Bye."  This time with more of a southern accent.  Finally the lady walked to the restaurant door and turned again.  Lily screamed, "Byyyyeee Byyyyeeee" and waved again.  

Although my child was yelling across a restaurant, it was so funny and wonderful, I started belly laughing.  Lily had not only engaged this stranger, but Lily knew she had to raise her voice for the lady to hear it across the large restaurant.  And somehow the intonation of her usual Bye Bye was now varried in more of a southern twang, like she had said it a million times before and was just mixing it up for kicks. 

Merry Christmas - Lily Gives Daddy A Big Present

For the past couple of weeks I've been asking Lily for one thing that she could give me for Christmas - for her to say DaDa. Well I can report that Christmas miracles do in fact happen. This afternoon at lunch I was in the kitchen when Mommy asked Lily where Daddy was. Lily turned around, pointed to me and said DaDa as clear as day. She's been making the occasional D sound, but never consistently or in the context of "Daddy." I was beginning to worry since she's mastered most everyone's else's name but mine - Mamma, Ivy, Emma, Elmo, etc. Needless to say it is something I'll never forget. We'll have more stories and photos from Christmas in the near future, but for now cheers and happy holidays to all!

Two Cool Toys - Kitchen and Little Linguist

Lily is getting the Little Tykes Kitchen for Christmas.  We figure this is probably the last Christmas we can talk about her presents without her knowing.  It took us three hours to put the kitchen together this afternoon and we are still not done.  The kitchen will provide all kinds of language possibilities: open, shut, on, off, twist, turn, in, out, on top, sink, oven, washer, cupboard, put, hot, cold, on and on and on....And it comes with a cordless phone, so maybe Lily will stop trying to take ours. 

The other language toy that Lily just received from Grandma Diane is Neurosmith's Little Linguist.  I could only find it for sale on E-Bay, but it is fantastic for language learning.  Kids play with the toy by placing a character (animal, vehicle or object) on a big white base.  As this happens, the toy recites the character's name.  And if you push the other button, the toy will make the sound the character makes.  At upper levels, the toy teaches colors and more complex sentence structure.  Little Linguist features an advanced computer chip that tracks the child's progress and automatically responds with increasingly challenging play.  Lily can listen to all the character names and place them into the toy when requested.  We are still working on all the sounds and saying the names of the characters. Ours came with a French cartridge, but I see others may have a Japanese and Spanish cartridge as well.  A very good toy.

Addicted to Oswald

We don't let Lily watch TV yet (at least we try not to). However I've occasionally turned on Noggin (Nick Jr.) and let Lily watch a few minutes. For whatever reason the cartoon Oswald always seems to be on. Lily had only seen this show twice before falling madly and utterly in love with this octopus. She also has a Dora The Explorer book that we read. On the back cover is basically an ad for other Noggin characters, including a picture of Oswald.

Last night Lily's Mom was reading this book and came to the picture of Oswald. Lily became excited and started telling Mommy to get up while pointing to the picture. She wanted to go somewhere and wanted to go there now! 

Lily has become quite the communicator, so after a few moments of back and forth, Mom figured out that she wanted to go to the basement to see Oswald on the TV. They headed downstairs and sure enough Oswald was on. Once she saw him, Lily calmed down and began to giggle. When he went off screen she protested to us as if to say "Hey, where did he go and where did you take him?"  I suppose there are worse addictions, but what do they put in those TV characters to make them like baby crack? At least Lily can tell us what she wants  ;-)

Repeating Words

Lily has started to repeat our words with more frequency.  Sometimes they are even very close approximations.  Today I tried saying to her, "Say this, Say that..."  And amazingly enough she will.  We've heard a very soft and gentle Grand-ma, Emma, Ivy, ABBA, Pap-Pap, Elea (elephant) and numerous other words, including a very clear "Burp".    

320 Receptive Words +?

Just finished the MacArthur-Bates Word Inventory and I've marked about 220 words/phrases that Lily knows receptively.  There are also numerous words that aren't on this list that I know LIly understands.  So I am adding at least another 100-150 to that total.  Everyday we are totally amazed by her comprehension.   She seems to continue to learn about 2-3 words a day.  There will be more to report from the last Baby Lab soon, like the baby game tests she took that comprised of blowing bubbles, eating crackers and playing with blocks. Nice!!  But we wanted to send in a more representative sample of her babbling, because once she gets in that Baby Lab with all the fabulous toys, she gets quiet and focused on playing. It is just like what happens to Lily's Dad when he goes into the Apple Store. 

Deaf Children Can Speak - Free E-Book

I just finished reading a free e-book titled A Father's Love - Teaching a Deaf Child to Hear and Speak...Perfectly, written by the Dad of a five-year-old girl with profound hearing loss.  The book documents his family's journey to Cochlear Implants, auditory-oral learning, and beyond.  It is a book filled with answers to the questions most commonly asked by professionals to a family with a newly diagnosed hearing-impaired child.  It is the first book I've seen that gives definitive answers about WHAT to do to help your child achieve remarkable speech and listening.  He is very direct and to the point. 

We share a similar philosophy that we too are doing everything possible to help Lily acquire excellent speech, language and auditory skills.   We only get one shot and there is no time to waste.  Whatever Lily achieves will be great; however, we want to give her the best head start to life we can.   

Here is an excerpt from his website:

"This book is written for parents of deaf and hard-of-hearing children who absolutely want their child to communicate in a hearing world. It is written from the personal experience of one father who did everything possible to help his young deaf daughter acquire excellent speech, language and auditory skills. Along with exceptional hearing and speech, this remarkable child has perfect articulation and above-age-level cognitive skills! You will not find a more comprehensive, to-the-point parents’ guide that explains everything from insurance, the oral language process, the IFSP / IEP process, the necessary three to five year commitment, and everything that must be done at home. Four years of self education and searching for the right answers are in this 75 page step-by-step guide."

Elmo Exposure

While we were playing in the toy room today, Lily pointed to a diaper box and said "Elmo" very clearly.  I thought I was interpreting something she may have said, but then I looked at the box and sure enough, there was a tiny little Elmo.  Lily's Dad even heard it from the other room. 

Lily has had very little exposure to Elmo, except for the time at Target when she refused to leave the display of talking Elmo's saying, "Elmo loves you. Kiss Kiss."  Lily threw the kisses right back.  Oh and the videos on YouTube of Elmo and Chris Brown (excellent), Goo Goo Dolls and just about every other singer/actor you can name, including Kermit the Frog.  Showing her YouTube on our phones and on the computer was a bit of a mistake.  Now we can't answer the phone or check our email without Lily demanding to watch the screen. 

Lily's Dad and I have hypothesized that Sesame Street must have tested and retested the most lovable and easy to say name for toddlers.  Although my favorite was always Grover, another word, said with such clarity thrills us to no end. 

Tango's Brother Joined the Circus

When we got Tango from the pound he had a brother that was taken by another family. Well, we may have found where he ended up (probably not, but there is an uncanny resemblance). Anyway, he appears to have joined the Banana Derby circus with his monkey friends. 

This may also explain Lily's passion to ride Tango as well.

A Visit With Santa and The Star City Parade

Lily had a busy day today, starting with a "Breakfast with Santa" fundraiser. Here she got to meet Santa and sit on his lap with Mommy. Well, as you can tell by the photo, it didn't go well. She was fine as long as there was a 5 to 10 foot distance. She did compose herself to wave and said "bye-bye" after the incident. Oh well, maybe next year.

After meeting Santa we headed on over for a front row seat at the annual Star City Parade. It's supposedly the largest parade in a five state region (probably because it's always held on a cold winter Saturday - at least it wasn't a snow storm as has been the case in the past). Anyway, Lily got to see the floats and clowns and big balloons of Nemo, Elmo, and Cookie Monster (seen here). We had a great time.

International Quilt Museum Video

Lily and I visited the International Quilt Museum yesterday and one of the staff people started asking me if anyone had given Lily a quilt. 

I said actually YES. Then she asked me to record a "testimonial" story about the quilt to be saved in the archives and of course viewable online (search for Susan and Lily) as well.

This was a spur of the moment deal, between shopping in the gift shop for teacher gifts and making sure Lily didn't tear down any of the 200 year-old quilts.  Lily loved making the video (we did it three times) and I couldn't pull her out of the testimonial room.  Very cool technology.

I wish I would have had time to prepare and even bring the quilt, but we simply wanted to express our gratitude to Grandma Carla's brother, who is an audiologist, for the fantastic quilt and of course the high powered hearing aids before Lily had her CIs. 

A Little Bit of Normal Goes A Long Way

While it's sometimes hard to forget that Lily can't hear without her CIs, it's getting easier to feel that we're living a "normal" life. Sure, most parents don't have a bedtime routine that requires charging batteries, testing equipment, and taking your kid "off the air," but since we've been living this life from the beginning, we really don't know any different. 

Yesterday was one of those days where it was just me and my daughter, not my hearing impaired daughter. Lily and I went to the mall for some Christmas shopping while Mommy taught her evening class at the university. We walked around window shopping and came upon the carousel at the center of the mall. Lily's eyes widened when she saw the horses going round and around. She literally started jogging to get a closer look. After a few minutes of watching other kids with excitement how could I resist her pleas of "mor, mor." We settled on a horse that I thought was anchored, but turned out to go up and down as well. With Daddy by her side, she hung on tight and road like a champion. It was a great feeling. 

These experiences are coming daily now and give us perspective as to just how far we've come. More importantly, they give us a glimpse of the future and provide strength for any potential obstacles we'll face on the journey.

Saying Grandpa

Lily has started to repeat lots of our words and sounds recently.  The best one by far has been Grandpa (a soft gran-pa) - much to the glee of Grandpa.    Of course this came (three different times) when she was trying to get Grandpa to take her downstairs to listen to ABBA.   Lily was as thrilled as we were when she said it.