Life is Bliss - Lily's Cochlear Implant Journey

Observation Report of Lily at Preschool

The following is an interesting observation report of Lily at preschool made by her Hearing Resource teacher.

"I arrived just as they were cleaning up.  Lily helped without any reminders.  Then they met as a group. One of the students has a birthday coming up, so they discussed that.  The kids were shouting out--I'm 3, I'm 4 etc.  Lily is saying I'm 6, I'm 6.  I'm trying to figure out what's going on when she looks at the student beside her and says, "April Fools."  Then they went outside to listen to a book, Twas the night before Easter.   Lily participated when her teacher paused-nonverbally asking for a group response.    Next was the egg hunt.  The teacher had told them that some eggs are easy to see and some are challenging, so decide if you want to find the easy ones or the hard ones.  Well, I guess Lily wanted the hard ones, because she passed a lot of very visible ones and kept looking in some very challenging places.  After a little bit, the kids who had found their one egg were taking them into their backpack.  I guess this motivated Lily to find anything she could, because she immediately picked one up.  She followed all instructions/directions, interacted with peers, and participated actively."

Internet Therapy Offered to Nebraska Children with Hearing Loss

Just when things are wonderful in the Cochlear Implant world, they get even better for kids in Nebraska.

We received a note today letting us know about new Internet Therapy for Nebraska families who have children with hearing loss from the St. Joseph Institute for the Deaf.   (see our iHear Nov 2011 blog post)

Our beloved Omaha Hearing School, although now formally closed, has reformed as a foundation and has funded this opportunity to provide speech and language therapy services over the internet to children in Nebraska and Western Iowa.   Services will be provided though St. Joeseph's innovative and groundbreaking internet therapy program called iHear.  

“By 
working 
with 
St 
Joseph
 Institute 
for 
the 
Deaf, 
the 
mission 
of 
the 
Omaha 
Hearing 
School
 Foundation 
to
teach
 young 
children 
with 
hearing 
loss 
how 
to 
listen 
and 
speak 
remains 
vibrant,” 
says
 Britt 
Thedinger,
 MD,
 an
 otologist 
and
neurotologist 
and 
a 
board
 member 
of 
the 
Omaha
 Hearing
 School 
Foundation.
 

SJI’s 
ihear 
program
 enables 
children 
with 
a 
range 
of 
hearing 
impairments
—
from
 cochlear 
implant
 recipients
to 
those 
who 
use 
hearing
 aids
—
to 
work 
with
 skilled 
listening 
and 
spoken
 language
 specialists 
via 
the 
secure
internet 
link.
  

Essential 
to 
the 
program’s
 success 
is 
its 
collaborative
 coaching 
model,
 in 
which 
the 
ihear 
staff
 coach
 a
 parent 
or 
educator 
present 
with 
the 
child
 in 
each
 ihear
 session.  
The 
coaches 
are 
then 
able 
to 
reinforce
 the 
exercises 
and 
lessons 
learned 
in 
between
 the 
therapy 
sessions.  
Children
 enrolled
 in
 the 
program
 typically 
are 
scheduled
 for 
two, 
half‐hour
 therapy
 sessions 
per 
week.

Thanks Dr. Britt 
Thedinger for your commitment to Nebraska's kids.  We'll provide more details on this program as we receive them.  

For
 more 
information
 about ihear,
 visit www.ihearlearning.org

 

 

Kids 18m - 36m with Cochlear Implants needed for research study at UW Madison

We've participated in a few Cochlear Implant research studies over the last four years.  Every time has been a fabulous learning experience for us and for Lily.  We've also felt a great deal of satisfaction in helping to advance the study of Cochlear Implants.   

A new research opportunity for kids 18m to 36m with at least one Cochlear Implant is starting at the University of Wisconsin - Madison.  This study looks at how toddlers with cochlear implants hear in noisy environments and localize sounds.  We're in a similar study which we've blogged about before.  

The researchers play games with the kids, take lots of breaks, give prizes (Lily took home 20 bouncy balls and her very first Barbie) and there is enough time to have a bit of fun in Madison.  The researchers go to great lenghts to make it a wonderful experience for the whole family.  

If you have any interest in particpating in this or similar research, I'd encourage you to contact the lab.  Let us know if you have any questions. 

DOWNLOAD UW Cochlear Implant Research Flyer for kids 18m-36m

New Baby Bodie Graeme

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."  

The Auditory Brain - Carol Flexer - Speech transcript - So Good!

We are huge fans of Carol Flexer an Audiologist, professor, book author and presenter on The Auditory Brain: Conversations for Pediatric Audiologists.  This link is to a transcript of a presentation and Q&A Dr Flexer made on AudiologyOnline last spring.  So, so, so good!  Mandatory reading.  

Apps for Kids and Adults with Hearing Loss

Great blog by Tina Childress on Apps for Kids and Adults with Hearing Loss.  These apps can be extremely helpful when teaching kids to talk and listen in ways they love to learn.  

Tina is a bilateral CI user and used to be with Advanced Bionics.  She gave a presentation at Boystown four years ago, which Lily's Dad loved.  She was one of the reasons we chose Advanced Bionics.

TEDMed Talk by CI Surgeon - CIs and Music

Very interesting TEDMed talk (16 mins) by cochlear implant (CI) surgeon and musician Charles Limb, associate professor, Otolaryngology, Head & Neck Surgery, at Johns Hopkins.  He explains the challenges of CI patients hearing music and the brain research that is being done to help restore the full range of human hearing abilities.  The talk even shows a video of a cat with a CI responding to a trumpet. 

Lily loves music and has recently figured out the phrase "That song is stuck in my head."  Her newest trick is dancing around the house singing "I got the mooooooooooooves like Jager" over and over again.  More focus and attention on music therapy would be an incredible addition to the speech therapy that now helps kids with CIs learn langauge. 

 

Quantity of Communication Matters

We've understood that quantity of communication REALLY matters since the beginning of Lily's hearing journey.  Now one of our favorite researchers, Mary Pat Moeller, has recently given a presentation on just that topic.

According to ASHA member Sophie Ambrose and her co-presenters Mark VanDam and Mary Pat Moeller, all from Boystown in Omaha, the research shows that quantity of communication matters for hard of hearing children. Children whose parents engaged them in more conversations were likely to have stronger language skills than toddlers whose parents engaged them in fewer conversations.

Previous research has indicated that to promote parent–child conversations and to otherwise facilitate the language development of toddlers with hearing loss, parents should use speech that is child-friendly, such as short, simple sentences, and talk about things of interest to the child.

ihear - Long Distance Oral Ed

Distance learning is getting better and better, especially for kids with hearing loss, in remote or rural places, with a lack of accessible services.  Check out IHear by St Joseph Institute for the Deaf. 

CI Video Story: Implanted at 20 months and now a teen

A beautiful documentary on the life of Skye Carter.  She was first implanted as a child (20 months) and now is in her teen years. 

Resource for teachers of students with hearing impairments

Good resource of learning activities for young kids with hearing impairments (or any kids for that matter). It is written by a teacher of HI kids so has language targets, vocab, etc.

 

Videos: Lily's language development 9-48 months

Lily was a participant in a longitudinal study in the Language Development Lab at Boystown National Research Hospital, directed by Mary Pat Moeller, Ph.D. The visits occurred between 9 months and 48 months old. Lily received bilateral Advanced Bionics cochlear implants at 10 months old.

9 months old

 

12 months old

 

15 months old

 

18 months old

 

21 months old - (21 month report)  (22.5 month report)

 

24 months old - (24 month report)  (25.5 month report)

 

30 months old - (30 month report)  (32 month report)  (34 month report)

 

36 months old - Receptive language test  (36-38 month report)

 

42 months old - Language test

 

42 months old - Sounds

 

48 months old - Final Language Test

 

 

Music changes our brains

Excellent article on how music changes our brains.   We've long been a believer in incorporating "music therapy" in all forms in Lily's auditory rehab, as there is growing evidence in its impact for listening and language.    

I'm often reminded of the person who told me "there was no proof, I was wrong in believing this, and that they wouldn't even consider this as a part of LIly's therapy."   Glad we didn't listen to this advice.  

Mild hearing loss = Brain Atrophy in Older Adults = Early Intervention

Interesting article in Science Daily

A new study by researchers from the Perelman School of Medicine at the University of Pennsylvania shows that declines in hearing ability may accelerate gray mater atrophy in auditory areas of the brain and increase the listening effort necessary for older adults to successfully comprehend speech.

What Parents Want from Physicians

Excellent article on "What Parents Want from Physicians" after their child has been identified with hearing loss.  

UW Madison's Binaural Hearing and Speech Lab - Research with CI kids

We spent the last few days at the University of Wisconsin's Binaural Hearing and Speech Lab.  This was our second visit and it's always eye-opening to understand how Lily is hearing. 

Over 2.5 days, Lily participated in a variety of hearing games including:  identifying words and sounds in noise and quiet from various directions, language comprehension, speech perception and production, and non-verbal IQ.  These games were broken up with lots of breaks, stickers, contests and prizes which were real drivers for Lily. 

The researchers that performed the tests were wonderful as well.  They were all  women working as professors at the University or on their undergrad, graduate and post doc degrees in speech or audiology.  And all were focused on careers with CI kids.  Wonderful to see the future of this emerging industry.  Thanks to Shelly, Christie, Kristie, Shelby, Yi, Sara and Sara for all your great work.   

Our observations of the research are that nosie significantly impacts kids' hearing, localization is hard for CI kids and Lily is doing fabulous with her speech, language and listening.  Lily's actual results will come in a month or so.

Here are some pictures of our experience. We also made stops at the Madison Children's Museum, the free Madison Zoo and State Street (downtown hotspots). 

For every family that can make a trip to participate in this research, we highly recommend it.  Check out the UW website for more information. 

Technology has changed the teaching of deaf students

Interesting article from the National Association of State Directors of Special Education concluding that Technology has changed the teaching of deaf students

What parents want from physicians

Great article about what parents want from physicians after their child has failed a hearing test or been diagnosed with a hearing loss.  All these were true in our case. 

Nebraska's Early Hearing Detection and Intervention Stats

I recently started serving on Nebraska's Early Hearing Detection and Intervention Advisory Committee. The staff just released the 2010 Annual Report starting on page 29.    

Interesting Summary

1. All the current birthing hospitals in Nebraska were conducting newborn hearing screening in 2010. All but one had conducted the hearing screenings during the birth admission. 
2. The benchmark of 95% of newborns having a hearing screening during birth admission by December 1, 2003 established by Neb. Rev. Stat. §71-4742 continues to be met. In 2010, birthing hospitals reported screening the hearing of 99% of newborns during birth admission or prior to discharge home for those babies who were transferred to another hospital.
3. The overall “refer” rate during 2010 for initial hearing screening during birth admission was 4.4%.
4. In 2010, follow-up hearing screenings or audiologic evaluations were initiated within one month of birth for 67.1% of those newborns for which follow-up activities were provided.
5. The average age at the time of the initiation of follow-up hearing screening or diagnostic evaluation was 32.0 days.
6. For the 51 infants identified with a permanent hearing loss, including congenital, later-onset and progressive hearing loss, the average age at confirmation of hearing loss was 125.2 days.
7. There are 350 babies born in 2010 whose hearing was not objectively established and there are 109 who expired before receiving or completing a hearing screening.
8. The incidence of Permanent Congenital Hearing Loss identified and reported to NE- EHDI Program (1.9 per thousand screened in 2010) is within the anticipated range of one to three per thousand.
9. Over 70% of the infants with a permanent congenital hearing loss were verified for early intervention and special education services.

 

Hearing Care in Developing Countries

Great article explains promise and challenges of bringing hearing care to developing countries.

Preschool Update

Lily is now in her second year of mainstream preschool.  She attends two different preschools and is loving it.  She has grown from a more reserved three year old, to a eager four year old answering and asking endless questions.  

For Lily's new preschool this year, we (my public school SLP, TOD and I) met with the teachers before class started and discussed good teaching strategies for kids with hearing loss, as well as "how tos" with her CIs and FMs. It's the "how tos" and the "this could happen but probably won't" that scares the teachers the most.  We also asked the preschool to use static spray on the plastic slides and plastic play structure.

They took it all in, asked great questions and have placed static spray around the building :).  We've had no problems with the CIs or FMs at preschool.  In fact one of her teachers said she loved the FM.  Great to hear.   I love the FM too.  Such a great tool, especially in noise.  

Already during the second week of preschool, Lily was eager to serve as a host for a new student, showing her the ropes. Lily's made lots of new friends and is off to a great start. 

We continue to work with our public school SLP three times a month, through home-based services and have a TOD visit once a month, typically to Lily's preschools or on-call for technology issues.   This has been a perfect fit of services for our family and has helped Lily to thrive.   

An intro to FM - Terrific Phonak Seminar/Video

Here is a terrific seminar/video on FM technology from Phonak.  Well worth the time to watch.  It covers everything from SNR to how scores for "hearing in noise" improves as people get older. It also describes those who would benefit from an FM including children and adults with hearing loss (even unilateral hearing loss), people with MS, children with autism, non native learners, those with auditory processing disorders, etc.

 

$1 in EI Services = $2 of Benefit

Social and economic benefits of early intervention for deaf children far outweigh investment cost says new report.

"Every dollar invested in early intervention services for deaf children produces almost two dollars worth of social, educational, vocational and economic benefit"

Parents Magazine Covers Cochlear Implants

Great article in the most recent Parents magazine discussing kids and cochlear implants.  

The author, Debbie Waldman, did a great job capturing a positive story about the very engaged Bennett family and their 4-year old daughter.  

It is a real story about a little girl who receives Cochlear Implants and now talks like a champ in a mainstream environment.  This story is sure to educate all families about hearing loss and give those families hope who find themselves on a hearing loss journey.  

It also avoids the old tired story that is often covered in the media which says deaf people hate cochlear implants.  While there certainly are haters, this attitude is rapidly changing.  

Ironically, Lily was going to be the featured kid in this article.  

We spoke with the author at length, multiple times, over two years ago.  It seemed that because Lily was implanted at 10 months (before the 1 year FDA guideline), Parents Magazine editors were worried about running her story.  

Alas...Cochlear Implant implantation before one year is fairly standard and the research continues to show that earlier is better.   While we're disappointed Lily's story wasn't told, we are thrilled that this article ran.  It's a story that should be told every year!!   

Thanks Parents magazine for covering an important issue that impacts thousands of families everyday.  

 

 

Therapy idea: Using old cell phones

Great article on using old cell phones to help kids practice talking and listening.  

From articulation to turn taking, from tone to giving details, here's a new life for an old broken cell phone.  

IEP - 4 years old

At 4 years old, the following are Lily's IEP goals for the next year.

- Given visual/verbal cues, Lily will improve her speech production of /l/, /l/ blends and initial and final /th/ from the baseline of 10% accuracy in imitation of single words to 80% accuracy in sentences and structured speech as measured by the LPS SLP Articulation Data Collection Chart.

- Given a structured activity, Lily will produce phrases/sentences with correct use of comparatives and superlatives, words denoting time, nouns with two descriptive adjectives, and a variety of prepositional phrases (at least 12 each) improving from a baseline of 25% to 80% as measured by the LPS ECSE Grammar Rubric.

- Given an interaction with a teacher or a peer, Lily will improve her social communication skills (maintain/stay on topic of conversation for 3-4 turns, advocate for herself when she doesn't hear or understand a peer's comments or questions), improving from a baseline of 2 points to 4 points,as measured by the LPS SLP Social Skills Rubric.

 

Wrightslaw Boot Camp for parents - Advocacy Training

Providing advocacy training for parents of children with special needs (Wrightslaw Boot Camp)

July 29 & 30, 2011

9:00 a.m. to 4:30 p.m.

Scottish Rite Temple
332 Centennial Mall South
Lincoln, NE 68508

All children qualifying for special education services are required to have an Individualized Education Program (IEP).  The IEP specifies the special education and related services necessary to ensure the child a free appropriate public education.  The IEP process can be overwhelming for parents due to complex federal laws and regulations.  Down Syndrome Association for Families (DSAF) is hosting an intensive, two-day Wrightslaw training on special education and advocacy.

If you are a parent or guardian of a child receiving special education services, or a professional wanting to better serve kids with disabilities, you don't want to miss this 2-day training!

Participants will learn about:

• special education statutes and regulations to get answers to their questions
• tests and measurements to measure educational progress
• charting out test scores
• writing SMART IEP goals and objectives
• using No Child Left Behind as a tool to open doors to services
• creating paper trails and writing effective letters
• advocacy strategies to negotiate for appropriate special educational programs

For a Schedule and to Register

Deaf Education Evolving with Implants

This article describes the impact of cochlear implants on teaching methods for kids who have hearing loss.  Like the Omaha Hearing School, the article provides a good description of the Clarke School for Hearing and Speech, an oral preschool.  While teaching methods are not one-size-fits-all, when children have access to sound at a very young age, an Oral approach maximizes that opportunity for listening and spoken language learning.

Omaha Hearing School....How do I love thee?

This weekend we attended a fabulous fundraiser for the Omaha Hearing School.  It was at the top of the Midtown Crossing Condos overlooking the city.  A perfect space, with fabulous food from local restaurants, a giant deck with temperatures like bath water and a packed room of supporters.  

At the end of the evening, the Director asked if we would address the crowd and tell Lily's story.  

Talking about Lily comes easy, as did my gratitude and thanks for all the support we've received.  Since Lily was two months old, we've worked weekly with the Omaha Hearing School.  They've shaped the way we teach Lily to talk and listen, with remarkable results.  They've provided unending support for our family.  They've set our goals higher than we ever thought possible.  

After Lily turned three, driving to Omaha for the mainstream preschool twice a week has been a major commitment. However, we sleep well knowing Lily is in an incredibly language-rich environment with great acoustics, and teachers who are highly skilled and committed to maximizing the technology.   The Omaha Hearing School staff is extremely flexible to Lily's needs and they take parent input seriously and act upon it. Dreamy, I know!

After we spoke at the event, a Omaha Hearing School graduate spoke, who is now age 26.  She is a gorgeous young woman who graduated from college at the top of her class and is a successful CPA.  Her family still generously supports the school and feels they can never "Repay" the school for how they have helped their daughter. Her Dad gave us a squeeze and through a few tears said he agreed with everything we said.   Pretty special.  

To any of our readers who want to invest in a organization that changes lives, here's your chance.  The Omaha Hearing School is an incredible 501(c)3 which is making a major difference in the lives of kids who have hearing loss in Nebraska and the surrounding area.  We hope you will consider a contribution.   

All Preschool Programs are Not Created Equal

Good article on Hearing Families called All Preschool Programs are Not Created Equal.  The article examines a study of 8-to-10 year old children with hearing loss who were all in mainstream elementary schools and had always used oral language.

When they compared the outcomes to a comparison group of kids with normal hearing, they found that half of the kids with hearing loss were far behind normal hearing children their own age. But the other half, showed age-appropriate skills, despite their hearing loss.  When they tried to understand the split in the hearing loss group, they saw that all of the kids on age level attended preschool programs that were either specifically for children with hearing loss or private preschools with low teacher-student ratios. The kids whose skills fell behind the kids with normal hearing, all attended special education preschool programs that were not specifically for hearing loss, but had kids with many different kind of disabilities all together.

Pediatric Audiology Free Online Conference - March 14-18

AudiologyOnline Virtual Conference starting tomorrow - Pediatric Audiology-Raising the Bar - Tremendous!!!   Worth signing up if you only listen to Carol Flexer.  A lot of other top notch pros as well.  

MIT Scientist Captures Son's First 90,000 Hours and First Words

Incredible article and real sound illustration in Fast Company about how sounds develop into words for babies.   Mind blowing!!

Auditory Verbal/Auditory Oral - Why being language focused is critical

This is an excellent blog, written by two Moms of kids with Cochlear Implants.   They advocate for Auditory Verbal Therapy (AVT) and early implantation of Cochlear Implants.   Two things I believe in strongly. 

The blog references interesting articles on How Babies Process Langague and Baby Talk which reinforce the importance of early langague input. 

Another recent early langague article with a twist is called Why Rich Parents Don't Matter.  It speculates that:

When it came to the mental ability of 10-month-olds, the home environment was the key variable, across every socioeconomic class. But results for the 2-year-olds were dramatically different. In children from poorer households, the choices of parents still mattered. In fact, the researchers estimated that the home environment accounted for approximately 80% of the individual variance in mental ability among poor 2-year-olds. The effect of genetics was negligible.

The opposite pattern appeared in 2-year-olds from wealthy households. For these kids, genetics primarily determined performance, accounting for nearly 50% of all variation in mental ability. (The scientists made this conclusion based on the fact that identical twins performed much more similarly than fraternal twins.) The home environment was a distant second. For parents, the correlation appears to be clear: As wealth increases, the choices of adults play a much smaller role in determining the mental ability of their children.

In Nebraska, it is critical that we increase the number of certified AVT and AVEd (Auditory Oral) teachers, especially working in early intervention (birth to five).  This should be a top policy priority.  With advancements in technology, it is vitally important that we continue to develop these skilled AVT/AVED teachers and reinforce auditory communication teaching strategies at every level. 

The Ls have come

Lily is starting to get the /L/ sound.  While this is a much later developmental sound, she has been making good attempts at the sound consistently for the past week.  You can see her stop to think about getting her tongue to the top of the mouth before saying light, lollipop or leg.  With a name like Lily Bliss, that L sound is so important.  Thanks to her great SLPs and lots of attention to L words.

2010 - A Year in Review and Looking Forward

I've been trying to recall what happened in 2010 and the implications or impact on our lives.   It was a busy year that went in many different directions.  Lily has grown in so many ways.  She is a little girl who sees no boundaries. 

Hearing issues still remain a major focus for our family, but it is now very manageable.  Our friends and family have been patient and listened to our never ending rants about hearing loss, technology and the challenges we deal with.  It has become who we are. 

Lily started two mainstream preschools this year and is keeping up or exceeding her peers in all areas.  We still work with SLPs and hearing resource teachers at Omaha Hearing School and our public school. The focus and upfront services have paid off and Lily's expressive and receptive language is extremely strong.  

We were fortunate to start using an FM system in preschool, throughout day at noisy times and in the car.  This has made a big impact.   Hopefully 2011 will bring a new BTE and ClearVoice from AB which Lily would transition to this fall.  Hopefully our advocacy with the public schools for improved acoustics in  elementary schools will mean all kids can have better options for hearing.  

Our passion for travel continued this year and we were fortunate to travel abroad, as well as to Chicago, Pittsburgh, Madison for a hearing study, and we attended AG Bell in Florida to both continue our education and represent the Bionic Ear Association.

LIly is rapidly developing her own interests including dancing, swimming, nature, music and art.   She's starting to read and never stops singing or dancing.  She loves her family and her life-long friends. 

Our families continue to provide major support to making our crazy lives work.  Without them, we wouldn't have the flexibility to go in so many different directions.  Thank You!!  It means the world to us and Lily thrives from your involvement. 

I think 2011 will bring many new ideas and activities, improved hearing and more advocacy, and maybe a grand adventure or two.  Lily loves surprises and so do we.  Who knows what the future will hold.

Assistive Technology Advocacy

Interesting new article on Assistive Technology Advocacy

Audiology Visit - 2.6 years post CI activation

We made our semi-annual visit to the Audiologist this week. 

Lily was tested in the sound booth first.  Left/Rt ear thresholds (quietest electric stimulation she could recognize) at 250 Hz 25dB/10dB, 500 Hz 15db/10db, 1000 Hz 15db/15db, 2000 Hz 30db/25db, 4000 Hz 15db/10db, 6000 Hz 30db/25db.   

Then they plug her in to the computer and adjust the map (software on her CIs).  Lily saw the cord and said, "Look, I have a leash."  Every electrode was tested on both sides.  Those around the 2000 Hz and 6000 Hz were adjusted up to see if we could improve Lily's thresholds in those frequencies. The rest were working well and only slightly adjusted.

They also did a Nu-Chips test which is a open-set word recognition/repetition test (R: 24/25 and L: 24/25) and a TAC Subtest 6 where she had to remember four critical elements and then match it to a picture (14/15).

Conclusion - Lily continues to do very well!

Chickens, Cakes and Cold - K and G Sounds

LIly has been working hard in speech therapy.  Here is a note we received last week from her SLP at OHS.

Just wanted to let you know how great LiIy is coming along with her "g" and "k" productions especially at the beginning of words.  She sometimes needs a reminder to put her tongue back but when she is focused on that sound she does real well.  In spontaneous production she still needs quite a few reminders, but can correct her production when I repeat her mispronunciation.  These sounds at the end or middle of words is still harder, which is expected.  She is still working hard to produce the "l".  She has been comparing this sound to the "n" sound which is placed in the same spot but with a little length difference. She can make the "n" sound several times before attempting the "l" to help her place the "l" tongue tip in the correct spot instead of flicking it...So she would say "n", "n", "n" (quietly) "lion."  Hopefully this will encourage her tongue to not flick so much. 

FMs - Thanks to Faye

Lily has been wearing a Phonak Microlink CI S receiver with a MicroLink FM transmitter during preschool, noisy activities, and therapy, until last week when one of the wires on her receiver pulled out of its casing.

I called Faye, our public school Hearing Resource teacher and within two hours, she brought a new receiver to our home.  This is AMAZING customer service!!!!   THANK YOU FAYE!!!  We really appreciate her responsiveness and attention to Lily's needs.   Lily never missed a beat and loves wearing her FMs.  They make a huge difference, especially in noise. 

Phonak, the maker of Lily's FMs, now owns Lily's Cochlear Implant company Advanced Bionics.  We are looking forward to a next generation Cochlear Implant that combines both of their technologies with out of this world results. 

Learning To Read

Lily has always loved books and reading. Here's a quick video of her taking a stab at reading herself. She's getting a good start for a 3-year-old. When Lily was first diagnosed I would have thought this impossible. Don't doubt the power of great early intervention, spectacular AB technology, tons of hard work, and a lot of love along the way.

 

Wisconsin Study and Bilateral Cochlear Implants

Interesting article about the Wisconsin research study on bilateral Cochlear Implants that Lily was involved in and more proof that bilateral CIs make a big difference. 

Hearing Loss in Children - Great Resource by the CDC

The U.S. Center for Disease Control recently launched a very thorough page on Hearing Loss in Children.  Worth some time reviewing, especially those newer to the hearing journey.

Deaf people can "rewire brains"

Interesting article from the BBC about the power of the brain and what happens when you don't use parts of it.  People with hearing loss likely have a better visual field.  

This has always been my theory about young children learning language and why it is critical to frontload all services to take advantage of early brain development.  

Carving Pumpkins = Talking Lily VIDEO

Carving a pumpkin seemed like a perfect time to play around with the video camera.  Our thought was to ask a range of questions to highlight the depth and clarity of Lily's language.   The pumpkin didn't turn out to be too scary, but it did get bilateral BWP Cochlear Implants.   

 

Screening Newborns for Hearing Loss - New Research

New research supporting the benefits of the Newborn Hearing Screening.  

Nebraska has mandated newborn hearing screening and that is how Lily's hearing loss was identified.  

Even when babies fail their hearing screens in the hospital, not all parents are following up with immediate tests. That means many deaf and hearing-impaired babies aren't getting the early intervention, such as hearing aids and language therapy that they need for long-term success. 

Doctors aim to provide babies with hearing aids by 3 months, although they can be fitted with the devices as early as 1 month.  The earlier that kids get help, the better.

 

Playing in the Leaves and READING

Playing in the leaves was a perfect way to spend a beautiful fall day.  

Lily knew that leaves rustle and crackle.   And of course they "fall from the trees because winter is coming."   Leaves and trees have been a theme at Nature preschool which she continues to enjoy.  

Speaking of Crackle - Lily is starting to read.  The Rice Crispy Box was in front of her and she sounded out "POP!"  "And there is an exclamation point," she said.  We also put the bowl of cereal up to her microphone and she said she could hear it cracking.  Now that is a very quiet sound.  

Last week she also read her first sentence in a library book that she had never seen before.  It said "I Love Dogs."  What an exciting moment.   Who would have ever imagined that she would start to read at 3.4 years old.    

 

Music Therapy Research - CI Rehab for Toddlers

We receive emails and comments from people all over the world on our blog.  The most common topic people have thoughts or questions about is Music Therapy. 

A few weeks ago we received a note from Felicia, a music therapist from Australia, who is interested in working with children who are deaf and hard of hearing.

She found this great article supporting our argument for including Music Therapy in rehabilitation. The article discusses that a Music Therapist in Israel, working with children with CIs, found that spontaneous communication was more frequent and prolonged when music was used.  This is a rapidly growing field of study and one which should be immediately implemented in rehabilitation strategies.  

We didn't know what to do with Lily and music.  Our approach was a gradual one.  According to this research, that seems to be the right approach.   Now Lily demands music in the car, in the house and pretty much anytime she can get someone to turn it on.  She's had a music therapist, been to Kindermusik and now she has music in preschool.  She sings, she twirls, she makes up songs, she picks up words and says "don't turn it off yet.  I want to listen to the whole song."  

Music is critically important to language learning. 

DVDs Don’t Turn Toddlers Into Vocabulary Einsteins

More research showing that putting your kid in front of the TV doesn't work. Reported on in ScienceNews. What does work is to bathing them in language. Talk, talk, talk.

Omaha Hearing School - Two-Way Mirrors

One of the things I love about the physical structure of the Omaha Hearing School besides the unbelievable acoustics are the little observation rooms attached to every classroom.  What an incredible way to promote parent interaction without disturbing the class and teacher.

Does your kid act the same when you are not around?  Now you can find out.

Here is a picture of Lily working with her new SLP Lisa.  It was taken through a two-way mirror.  When I showed it to Lily, she said "How did you get this picture.  You weren't there."  Oooops.

Lily's Public School Teachers

Here are some of Lily's favorite teachers Faye and Carole. They have both been with our public school for more than 25 years.   Faye (left), a hearing resource teacher, has worked with Lily since she was two months old, and Carole, an SLP, has worked with Lily since she was nine months old.  Both of them were kind enough to come visit Lily's new Nature Center Preschool and help her teachers with different tips and tricks.

They will both periodically be monitoring Lily in her mainstream preschool to make sure she is hearing (with her new Bilateral Phonak FMs - So excited about this technology - WOOOHOOO), engaging with her classmates and meeting her IEP goals.

Lily was tested in the sound booth with and without her new Phonak FMs in noise.  Without an FM, Lily heard 50%-70% of what was said when the noise level was equal to the speakers voice.  When she had her bilateral FMs on, Lily heard 100% of what was said.  Incredible!!!!!

It is such a nice option to be able to put Lily in a mainstream classroom (in addition to her mainstream class at Omaha Hearing School) and still have the support of our public school.  With the proper supports upfront, these kids with hearing loss are reaching new heights and will be able to be mainstreamed earlier with minimal support.