Life is Bliss - Lily's Cochlear Implant Journey

Postcard Hula

Lily received a postcard today from her SLP Carole, who just happened to take a fabulous trip to Hawaii for spring break.  The postcard said that she missed Lily and wanted to make sure Lily was still working hard while she was gone.  So Lily's vocabulary word for the week was Hula.  The picture on the front of the postcard was of little girls in pink skirts doing a hula dance.  I tired to explain this vocabulary word to Lily and I actually came up with a hula song.

Oh we're going, to the hukilau
Huki huki, huki huki, huki hukilau
Everybody loves the hukilau
Where the laulau is the kaukau at the hukilau
Oh we throw our nets out into the sea
And all the ama-ama come a-swimmin' to me
Oh we're going to the hukilau,
huki huki huki, hukilau

By the Ray Conniff Singers

Who knew it was in the back of my brain somewhere.   We danced around the living room and I imagined we were in Hawaii, as the snow lightly fell outside on the last day in March.  Where is spring?

"Life's Too Short. Live It Up."

We had a good Chinese dinner with our friends Kam and Yvonne this evening. As you can see by the photo, Lily is living up to Kam's motto, "Life's Too Short. Live It Up."

Is She Talking?

Two stories to share, where the other person had no idea how much meaning their questions held.

I was getting my nails done yesterday (an annual event) and was talking with the Vietnamese manicurist.   She had only been in America for a year, so our conversation was simple yet fun.  She asked if I had any children. "Yes, one daughter."  How old is she?  "Almost two."  Is she talking?  "Why YES she is."  Huge smile from me. 

Last week, we were at the library checking out books.  Lily had taken the canvas bag and run over to see this giant stuffed horse that the kids can play with.  I turned around and said, "Lily come back so we can put the books in the bag."  On cue, Lily came back with the bag.   The Librarian said, "Oh she is so smart."  I thought, you have no idea. 

Sushi at Sunset

We attended Sushi at Sunset last night. Sound intriguing?  It is an annual fund raiser for the Omaha Hearing School.  Last year it was in the backyard of the school, but this year it was at an art gallery with encaustic paintings and all the sushi you could eat.  So delicious.  

At the event, we met a couple whose girls had attended the school many years ago.  They were still big fans and said OHS made all the difference in their daughters' lives.  They told us their girls, now in high school, are both on the honor roll, participating in band, driving all over town and looking forward to college.   They were so proud of their girls and helped us to see that everything will be just fine. 

Here is a picture of Heather and I demonstrating our skills with chopsticks. 

49th Annual Pancake Fundraiser

Susan and I volunteered at the annual fundraiser for the local CI Sertoma club. The event was well attended with over 1,200 people partaking in tasty pancakes. The proceeds went to fund a local hearing aid bank and other initiatives like sending CI kids to camp.

A CI Speaking Gig at Rotary

Lily had a speaking gig today at my Rotary Club.  Actually, I had Jeff Simmons, our Clinical Audiologist with the Boystown Cochlear Implant Center, speak to the club and Lily and I did the introduction. 

I think it was a hit, because of the number of club members who made comments about loving it and how they could relate.  I told Lily's story in one minute or less as she was tapping on the microphone and saying down.  In the middle of the introduction, I said that Lily was now age appropriate for her receptive and expressive language, and there was spontaneous applause. Lily clapped too.  I was really proud to share her accomplishments. 

Jeff was an excellent speaker.  He gave an overview of hearing loss, hearing aids and cochlear implants and included just the right amount of "selective hearing" jokes to keep the audience entertained.  Most of the people in the audience seemed very interested in the subject, especially when he answered the age-old question about if a tree falls in the forest and no one is there, does it make any sound....NO. 

I also recruited some local bilateral CI guys, who served as my "models" for the event.  They helped me put a real face to the discussion.  Of course they thought Lily upstaged them.

New Stem Cell Therapy May Lead To Treatment For Deafness

Interesting new article on Stem Cell Research from Science Daily (Mar. 23, 2009) and its future potential to treat hearing loss.  The following is a brief excerpt:

Deafness affects more than 250 million people worldwide. It typically involves the loss of sensory receptors, called hair cells, for their "tufts" of hair-like protrusions, and their associated neurons. The transplantation of stem cells that are capable of producing functional cell types might be a promising treatment for hearing impairment, but no human candidate cell type has been available to develop this technology.  A new study led by Dr. Marcelo N. Rivolta of the University of Sheffield has successfully isolated human auditory stem cells from fetal cochleae (the auditory portion of the inner ear) and found they had the capacity to differentiate into sensory hair cells and neurons.

Baby Lab Report - 21 months

Another good baby lab report.  Lily was really tired, but amazingly enough she used more words than ever.  Here is the summary:

Wonderful talkative session.

1.  Majority of spontaneous talk was words.  The words are getting clearer (opa has two syllables now - open, more = consonant + vowel, Minnie was close, etc.).  Likes telling you what she sees and does; names ojects and actions. Uses words socially - hello, yeah/no

2.  Diversifying vocabulary (dad vs. man vs girl vs Minnie)  Maybe emerging chains (a: boom)

3.  Vocabulary is exploding - Mom counts 70+ words expressively.

4.  Starting to hear fricatives (sh) - horse (shush)

5.  Jargon sequences (foreign language sounds) are cool.

6.  Comprehension is great. She identified 24 objects + verbs today!  Wow!

LENA Developmental Snapshot

We found an interesting new Developmental Snapshot for children 2 to 36 months.  The LENA Foundation, maker of the digital recorder that counted our words and interactions, has now developed a 52-question parent survey that assesses both expressive and receptive language skills and provides an estimate of a child’s developmental age. 

In their promotion piece, LENA said, "In the summer of 2007, when the LENA Foundation first offered the assessment, more than 13,000 people used the service in a single two-month period."   Not sure what the fee was at that time, but now it is $19.95.  LENA is also now a not-for-profit, instead of a private company, and is dedicated to developing advanced technology for the early screening, diagnosis, research, and treatment of language delays and disorders in children and adults.

We haven't tried the Developmental Snapshot yet, but it certainly sounds like a useful tool.  Of course  how many developmental snapshots does one baby really need? 

Smart Guy Making CIs Better

Here is a link to a retired HP Engineer's page - citheory.com.  Mike Marzalek has a CI and has been using it to work on a next generation CI speech processing strategy. 

Specifically, he is looking at music and provides a Virtual Piano so people can determine which frequency regions are too loud or too soft and a different way to optimize CI performance. 

This innovation is fantastic to see and needs to be supported.  We need more of the world's best and brightest engineers, doctors and audiologists thinking about how to make CIs better.  I can't provide much help in this area, but I'm happy to blog about it.  Go Mike Go!!!

Listening to the Birds

Three times today, Lily heard the sweet songs of birds ready for spring.  She would either tap her cheek or whip her head around to search for the bird making the sound.  Makes me want to scream for joy, the same way Lily screams when she sees her friends Emma and Ivy or the neighborhood park in the distance.

Sounds like a Foreign Language

When Tiffany and I were growing up, we had big imaginations.  Sometimes we would pretend we were in a foreign land and coincidently we could always speak the language.  We never just said Blah Blah Blah.  It would always be a complicated set of tones and words, pitches and slides. 

When Lily is really babbling, I am reminded of this foreign language.  It sounds convincing.  Lily seems to believe she is saying something with meaning.  She will answer every questions, although sometimes, I have no idea what she is responding with.  At night when she is stalling, she will go into very long strings of babble or babble song.  Then she laughs or waves her hands in the air for a big finish. 

I wonder if another baby would understand?  A secret language of sorts that the SLPs haven't cracked.  Hopefully, that foreign language becomes more and more clear, with each passing day.  As you can tell from the expressive word list on the side (65+ words and losing count), it certainly seems to be working.  Receptively she understands so much, it is hard to put a number on it anymore.  Exciting times.

OPA, OPA - Happy St. Patrick's Day!

Lily had a great Irish feast tonight at out favorite Greek restaurant (Long story short, every year the best Irish food is served up at our friend George's greek restaurant for one night only). In addition to the usual boiled potatoes, cabbage and corned beef, a troop of Irish dancers entertains. Lily loved it. What a great day to celebrate. Here are a couple of pics below (and don't forget to see more photos at Lily's Latest Pics on the right side of the blog).

Dreaming about CIs

When Lily was first diagnosed with her hearing loss, I used to dream about something hearing related almost every night.   I'd try to solve problems, come up with new people to contact and think about why this had happened. 

Last night, I had another dream about hearing loss, but this time it was my own.  In my dream, I had bilateral cochlear implants and when they would fall off, I could still hear, although not as well.  The sound was a little distorted, but even when people would cover their mouth, I could still tell what they were saying.  I would repeat everything and say, "I can still hear you." 

I could have been thinking about losing residual hearing once a CI is inserted in the Cochlea.  Doctors have typically believed that all residual hearing is lost once a CI is inserted.  Now they are finding that sometimes, the residual hearing still remains, but they are not sure why. 

I have also recently heard of a study at the University of Iowa that was inserting a long array in one cochlea and a short array in the other, with a aim to preserve the residual acoustic hearing in one ear.  I can't wait to see where science takes us next.

Coming To A Cochlear Implant Center Near You

We're always on the lookout for up and coming technologies that will make Lily's life easier with her cochlear implants. This often times means looking to Europe or Canada for the latest offerings from the cochlear implant manufacturers. Because of FDA regulations in the US, it often takes longer for these new offerings to make there way through the approval process and to the market. This can sometimes be frustrating - especially for some of these accessory offerings like new battery options or harness options that don't really impact the actual cochlear implant device or the sound processor. However, its nice to know they are looking out for our kids. 

One of the new devices we'll be interested in taking a look at is Advanced Bionics new off-the-ear battery options that will allow Lily to use a behind-the-ear Harmony processor, but not have the bulk of a big battery on each ear (see picture below). We've heard that the behind-the-ear Harmony offers a lot of advantages (like t-mic options, better positioning to take advantage of one's ear anatomy, and digital sound processing). For now, the body worn processor with the single magnet and microphone combo is really ideal for an active toddler, but we'll keep looking for better.

An Interesting Idea? Nutritional Supplements

As parents of kids with hearing impairments become "experts" in the field of speech pathology, they learn about various speech disorders like Apraxia.  I don't think Lily has Apraxia or any oral motor issues, but I stumbled across a new website offering nutritional supplements, when one mom introduced the idea as something to help with language development.  

I have no idea in the validity of the website NourishLifespeak, and frankly it seems like they could be  "Selling Snake Oil" (in this case fish oil), but it is a very interesting idea.  They present some initial research studies, but again, I don't know anything about this or if these studies are credible.  Check with your Doctor before taking anything.  Their idea is that certain nutrients play a key role in reducing inflammation and oxidation which appears to be a formidable issue in individuals with verbal, oral and motor Apraxia.  This is commonly seen in children on the Autism spectrum.

Food processing has changed so much in recent years.  I can't help but think certain disorders, in both adults and children, are linked to what we put in our body or don't put in our body.  Just something to think about.  Now I must go plant my organic garden. 

John Tracy Baby Course Graduate

I have officially completed the John Tracy Clinic baby course and am now on to the preschool course.  The John Tracy Clinic, founded in 1942, is a non-profit from Los Angeles that specializes in spoken language development by providing free distance learning for parents around the world, in addition to other services like a summer parents training session. 

To participate in the distance learning course, parents register with JTC, read a document full of ideas and questions that helps guide them in working with their baby, and then a few weeks later fill out a "report".  That is it.  Then parents get a new document that is developmentally appropriate to their child and do it all again.  JTC even sends parents a "customized" letter giving encouragement and answering any questions they might have had during the past month.  There are ten lessons in the baby course and another ten in the preschool course.

This is a simple and inexpensive way to provide ideas, advice and lessons about spoken language to parents around the world with children who have a hearing impairment. 

A Touching Sweet Moment with a New Friend

I've been emailing with a new friend whose baby was recently identified with profound hearing loss.  Their family is in the "research phase" trying to figure everything out.  They are asking all the right questions and learning everything they can. 

She shared with me the following story of a touching sweet moment that they had with a stranger.  It is interesting that sometimes such peace can come from someplace so unexpected. 

My mom and I were at a local bookstore with my baby daughter, looking for books that would be a good resource to us! An older lady came over and started talking to her just like she was 10 years old and could completely comprehend the conversation. 

She sort of chatted with her a bit and then pulled back her hair and said, ”Look…I just wanted to show you that we match,” as she showed her hearing aids.  And then she told my daughter that “everything will be just fine.”

It was a touching moment for me because her approach was brilliant and so sweet! I loved that she was just addressing my daughter before she filled me in on why she came over.  She said that she saw the Phonak bag sticking out of my diaper bag, so just thought that she would come over. 

She spoke very well, but hears very, very little from the aids. When you spoke to her directly head on she could lip read.  She said that she has been researching the options of a cochlear implant for herself right now.  She has been deaf since birth.  I can’t wait to meet more people just like her in this journey!!  How lucky is my daughter to have acquaintances like that!

AB Hearing Journey for Babies and Toddlers

A new section on Advanced Bionics Hearing Journey website, targeting babies and toddlers, has just been   launched.  This is an excellent site for free activities and resources to support the development of speech, language and listening skills.  The site features works from Dave Sindrey, AVT and Chris Barton, Music Therapist. 

Always Check The Equipment

When Lily was running around getting ready for bed tonight, we noticed that her left ear processor unit would occasionally beep. This warning beep typically happens when the headpiece comes off or the battery on the speech processor gets unseated, but tonight it was intermittent and didn't appear to be a battery issue. 

Well after 10+ months of heavy usage from an active toddler we discovered that one of her headpiece cords finally gave out. It started to fray at the base where you plug the unit into the speech processor. Luckily we are very diligent about checking all of the equipment each night (and during the day for that matter). For a more detailed test you can check the cord by plugging headphones into the unit and seeing if there is any static when the cord moves. We could tell right away that the cord was fried and quickly found the place of the problem. Luckily, we have a couple of spare cords which we swapped out and got Lily back on the air. 

We've heard that the milage varies for how often people need to replace cords (I'd image it would be similar to wearing your iPod headphones continuously for months - not sure how long they'd last either). Since replacement cords are $39.95 we treat them as gingerly as possible and Lily's good in that she doesn't pull or play with the cords. We've heard stories about parents needing to replace equipment monthly because the kid chews, pulls, or damages the cord on a regular basis. 

In the end it was a good reminder to check the equipment and keep some spares handy. Crisis averted.

OtoChip - Advances in Genetic Testing

For families of kids with a hearing loss, the "why" seems to be a common question.  Why did this happen?  What did I do?  Why is the why so hard to figure out?   I've heard many stories about Moms blaming themselves for "doing something" when they were pregnant to cause it.  Most often these worries are totally unfounded and just come with the guilt that Moms and Dads feel about having/causing a child to have a special need.  

Research shows that cause of hearing loss, for around 50 percent of children, is genetically linked.  For many families, genetic testing has been expensive and difficult to obtain.   It is often not covered by insurance, because a genetic test doesn't "do anything" for the person's health.  This of course doesn't take into account the piece of mind of knowing the "why" question or understanding if there are any other issues that are genetically linked to the disability or the implications/chances of having more children with this disability, etc.  For example, for children with Usher's syndrome, vision loss is connected with hearing loss.  By detecting the vision loss early, families can plan, understand and implement any new sciences that prevent the vision loss. 

One of the more common genetic tests for hearing loss tests the gene defect in GJB2/Connexin 26/30.  About 50 percent of hearing loss is linked to this gene. 

Genetic testing is also not right for everyone.  There are all kinds of issues to consider like what do you do with the information and how can your child be discriminated against with a known genetic issue.  There is a new federal law preventing discrimination from happening, but who can predict the future?  Typically genetic results are provided to you by a Doctor or genetic counselor and these very important issues are reviewed. 

But now for the really exciting news.  Harvard University, is coming out with a genechip that is able to test 8 genes, at the same time, that are all related to hearing loss.  It is called the OtoChip.  This, in theory, is supposed to bring down the cost considerably and speed up the time it takes to process the test.  It will also be testing for gene mutations that are less common and might not be ordered by your doctor. 

Watch the Harvard website for more information. The clinical test will be able to be ordered by a physician.

Regional Planning Team Parent Rep

Nebraska is divided up into "special education" regions that are monitored by the state.  Our region is just our town's public school district, but many rural areas represent multiple towns and counties.    Each region is represented by a Regional Planning Team which is made up of service providers, school staff and parents.   I am on that Regional Planning Team as a parent representative.  It is the first time there has been a parent representative of a child with a hearing impairment. 

The goals of the regional planing team include marketing the early intervention services, monitoring the process and time line from referral to identification to IFSP/IEP, and parent involvement and awareness. 

One of the parent initiatives has been to create a Google Group/Listserv for local families of children with a hearing loss.  The online group will allow parents to ask questions of others, post information, discuss hot topics and help families of newly identified kids.   If the models works, we will look to replicate this tool.  Some special needs groups in our community are very organized, interestingly the families of kids with a hearing loss are not.  This could be because kids with hearing loss represent a range of needs (signing and not), loss (mild to profound), technology (CIs, hearing aids or bone conductors) and other additional issues.  

Whether this tool is successful or not, our aim is to create a stronger bond and voice for local families of kids with a hearing loss. 

Experience Books

I've created two more experience books for Lily on our trip to Disney. Our hearing resource teacher Faye will be so proud.  They serve as powerful language tools and personal memmories that keep Lily's attention.  Here is a wonderful article on finding the value of experience books.

Fast and Furious

The words are coming fast and furious.  I can't even keep up with the expressive language (ok this is a little exaggeration, but we are hearing 4-5 new words everyday) and I've all but given up on tracking receptive language.  Lily is constantly surprising us with another new word she knows.  She is not talking in sentences or even two words together, but if you say "what is this" she'll say purse or Big Bird or Dora or Ivy.  Lots of nouns.  She is also repeating everything, especially words at the end of the sentence. 

Today we also attended the SNRP Bowling Day for students who have a hearing impairment.  Lily dazzled them with her Kindermusik Walk Around Rover Song and her Good Bye song from library story time.  She hears these songs well and does all the actions including getting on the ground and "shaking her tail."  She was even saying "run, run, run" as she ran around Mommy fast and furious, for the second verse of Run around, Run around, Run around Rover...

Perfect Morning

Lily was on her game this morning. Carole brought over a board game to play with her. On the board were nine pictures of everyday items like apple, dog, sheep, telephone, umbrella, fish, etc. Along with the board came matching cards that Lily could place overtop of the pictures. Carole would ask Lily where each item was and hand Lily the matching card when she pointed to the right item. Not only did she get every item matched properly she spoke every word as well. She's also adding a ton of "expressive" words to her list, including, go, shoe, socks, roll, heart, flower, and cheese to name a few. Ahh, progress!

Sounds In The Morning

Lily gets a huge smile on her face every morning when we pop on her CIs and say "Good Morning." It must be a rush to have a sense "turned on" and immediately accessible to you - at least that's what I'm imagining when I see her big grin. I'm looking forward to the day when she can describe it to me.

Additional IFSP Goals

One of the great things about working a lot of different professionals, is that you get lots of different ideas.  Sometimes we have tried to coordinate our IFSP goals, but this go around we seem to have created lots of different goals.  You can never have too many ideas or goals that you are working on at this point, because it is all part of the bigger puzzle. 

I thought I'd post some of those additional goals that we've set in the Omaha Hearing School IFSP, for the interest of others that may walk in our shoes.

From the beginning, the professionals have been asking us, "What are your goals for Lily?"  Goals?  Do all parents set goals for their children every six months from the time they are born?   Yes big life goals like go to college or travel around the world or marry someone fabulous, but not many have goals like families in some kind of special education do, for every developmental area of their child's life. 

For some parents, this may have been an easy question, but for us I am not sure that still today we can answer this question with any confidence or authority.  My primary goal or vision for Lily has always been to have her talk and listen as well as she can and love doing it.  I look to the professional on the steps to get us there. 

Here are some of those additional steps we are working towards - from now until Lily is 2.1 years old. 

1.  Lily will name familiar things in response to the prompt "What's that?"  Continue with "Where's...?"
2.  Lily will respond to more novel directions outside of her regular routine.
3.  Lily will respond to familiar 2-step directions.
4.  Lily will say 75 new words to label and to intentionally have her needs met including her own name, 10 action verbs, 5-7 descriptive adjectives, 2 prepositions of location
5.  Lily will use 2-word combinations: N+N, N+V, V+N, A+N, P+N, Question + N, N+N
6.  Lily will sing songs with a sustained voice and pitch changes
7.  Lily will imitate all Ling sounds
8.  Lily will look at people when they are talking to her and will look at people when she is talking to them, unless it is in a natural situation when she is working side by side with another adult or child. 

Speech Therapy - The "Wh"

Today's focus at speech therapy was the Wh sound, as in Where, What, Wait, Watch, Owie, etc.   We said things like what's that, where is.., mama watch, wait, weee, does baby want water, etc.  We rolled cars down the ramp, fed a giant baby on the front of a box paper food, and played with a puzzle that had vehicles for its pieces.   The ambulance of course went woo woo. The other goal for the day was focusing on the second syllable of words.  Lily now says O-pen, instead of ooooh. I noticed she is also saying Ba-by instead of ba-ba.    Homework includes putting band aids all over a baby and talking about her owies. We're sure to have the Wh and the second syllable of words down in no time. 

Insurance Coverage - Our Story and the Nebraska Legislature

The Nebraska Legislature is taking up a bill, LB 493, introduced by Sen. Karpisek.  It is the same bill as Sen. Schimek introduced last year.  It says:

"Notwithstanding section 44-3,131, an individual or group sickness and accident insurance policy,
certificate, or subscriber contract delivered, issued for delivery, or renewed in this state or a hospital, medical, or surgical expense-incurred policy, except for short-term major medical policies of six months or less duration and policies that provide coverage for a specified disease or other limited-benefit coverage, or a self-funded employee benefit plan to the extent not preempted by federal law shall provide coverage for single or bilateral cochlear implants for persons diagnosed with severe to profound hearing impairment."

Makes sense, right?  Insurance companies should cover cochlear implants, a proven medical technology with a 30-year history.  However, some of the insurance companies believe otherwise.  Last year, a half dozen insurance companies in Nebraska, bankers, and the Nebraska State Chamber of Commerce testified against the bill. This year, the same thing happened. Why?  Their argument is that insurance mandates equal increased cost for employers and the end-user.  It is the same argument used on every insurance mandate bill regardless of its merits.  Mandates = bad.  They argued the market should drive insurance coverage.  Sure, until you have a disparity of some insurance companies covering two cochlear implants, some covering one and some still covering none. If you are lucky enough for your employer to have chosen the right coverage, then great. If not, tough luck.

One lobbyist even suggested that parents should have had the foresight to know their child may be deaf or hard of hearing and inquire if their plan had coverage for Cochlear Implants before having the baby.  This lobbyist must have not known that 90% of hearing impaired kids are born to hearing parents.  And when challenged, the lobbyist responded that, "Well if you didn't know they were deaf until after they were born, then you should buy coverage then."  Right.

So what happened last year to the bill?  It died in committee with no vote taken. What will happen this year?   We'll see.

This story brings back some old memories.  A year ago this week, we were applying to get Lily's CIs covered by insurance.  Months before we officially applied for “Official Approval” we asked twice and received two emails from our insurance company saying YES they did cover bilateral cochlear implants and there were no age minimums or maximums.  We were so relieved and thought well now we can cross that off our list as something to worry about.  We were wrong.