Blast from the past

I’m happily and finally back in the world of blog. It’s been a long hiatus, but I’m excited and hopeful to keep up the posts.

Bliss is doing very well. We feel like we climbed Everest after her second and final cochlear implant last April, and are now on the next leg of the journey; developing her speech. It is both exciting and challenging.

We had a wonderful experience with the REACH Program at Castle in Chapel Hill, and we are now studying privately with a fabulous SLP in our home town, who came recommended to us via our SLP at REACH. We began meeting twice weekly with Ms. K the end of last summer and are now studying with her once a week.

In addition, Bliss is receiving two weekly speech therapy sessions through our local school system, which is great!

This past week Ms. K worked on using “past tense” with Bliss. We sat around a table and each did something. Ms. K clapped and said ” I’m clapping, I’m clapping.”. Then she stopped and said “I clapped. I clapped.”. It was a fun game, and each of us had to come up with a simple activity we could do at the table (snapping, yawning, etc…), verbalizing our action, and then the past tense of that particular verb. Bliss had fun!

We read “The Little Mouse, The Red Ripe Strawberry, and The Big Hungry Bear,” by Don and Audrey Wood. ┬áMs. K broke out her awesome book kit (which I’ll go into next post) and Bliss was entranced….mostly, she is 3. Ms. K uses small representative objects for the various characters that appear throughout the book; basically a mini puppet show that is acted out. It’s pretty cool. She focused on asking Bliss logical questions about the story as she read along. Developing comprehension.

This week we are charged with past tense input, input, input! So since Wednesday’s lesson, we’ve been talking about everything, everything, we do throughout the day, using present and past tense. We’re pretty happy; last night before bed time Bliss spontaneously said “Hey, I dropped my ear!”. (ear is code for implant processor that she wears on her ears). We just have to keep up the consistent blast of past tense input and in due time, it will be achieved….and a thing of the past.

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Buzzwords

It’s been a long time coming, and I apologize for the delay in posting. We’ve had a crazy few months – all good, but a roller coaster adventure.  Bliss has been approved for a second cochlear implant, and we are overjoyed~! 

 

Since the last posting, we have attempted cochlear implant surgery in her left ear, on two separate occasions. The first attempt in December and the second attempt again in January.  Both attempts failed due to congestion and a middle ear infection. 

 

We were deeply disappointed, but also thankful for the care and compassion of her doctors in Chapel Hill.  Although everything was in place for surgery, the amazing team of medical professionals made a hard but smart decision, and halted surgery for another time, putting her health first.  We are now keeping our fingers crossed for another try later this spring.

 

In the meantime, Bliss is doing great!  This week we’ve had two sessions with Amazing E and a great online meeting with her speech pathologist Ms M. at CCCDP for REACH.  We are approaching our weekly goals like workers bees and taking it a day at a time, working on our specific marks each week, and trying daily to reach our goals. 

 

One of our main goals includes weekly “buzzwords” – nouns, verbs and adjectives like “bee,” “run,” “sleep,” “big,” “eat,” “more,” “walk,” and “push” that we focus on and work with daily.  Each buzzword takes a journey – first there is input of the word; then comes comprehension; then follows imitation and finally, spontaneous use.  We’re learning cool and fun techniques to implement each stage of the vocabulary process.  For instance, Amazing E had Bliss make a “bee” out of construction paper that’s sitting in our kitchen as a visual reminder of her buzzword.

 

Each week we’re taking each buzzword and putting it through the paces until we get the end result, the honey, which is spontaneous use. This week it happened at one of our speech sessions when Bliss grabbed a pen and stated “my pen!” She also spontaneously said “toy,” “paper,” and “mama shoe” this week in context. These phrases and words have not been specific buzzwords on our list, however, she’s added them to her repertoire.  We’re abuzz with happiness and hope, and it’s definitely made this week sweet.

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REACH for Speech!

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A couple of months ago we were in Chapel Hill visiting Bliss’ audiologist at CCCDP /Castle.  As we waited in the lobby, we spent a few minutes with a wonderful speech pathologist. Ms. M., who we met on our initial visit to the office.  Spontaneously, Ms. M. spent a few minutes telling us about a new program they’re initiating called “Reach,” where we would have weekly video conferences with her and/or other speech pathologists until Bliss is the age of three.  Basically, the chance for complimentary speech therapy for Bliss, for another year.  Were we in?  Oh, like Flynn!  

The past few weeks we’ve had the pleasure of working with an awesome IT gentleman by the pseudo name, Mr. R.  He’s just plain fabulous, and after some troubleshooting via telephone, we’re officially up and running!

 

We begin our first videoconference/speech therapy session with Bliss next week, and we can’t wait.  She was in our den/office one of the times we tested our video connection, and she was completely mesmerized by the live moving + talking person on the other end of the computer, Ms. M.  

 

Most of all, we’re looking forward to expanding our knowledge with new training to help Bliss with her speech development and comprehension.  Also, we hope to become better advocates for our daughter.  Ms. M has provided a laundry list of toys and items to help assist with new teaching techniques, and we’re beyond excited at this new learning opportunity technology has given us and all of the folks the program extends to.  

 

Another perk, we don’t have to travel far to connect with some of the country’s most talented and giving speech pathologists.  Their library of knowledge and ability to help is just a mouse click away.  

 

As with any computer based program, there have been a few bumps in the road in terms of technology.  All of that aside, CCCDP/Castle has proven to be committed, patient + progressive…..reaching patients far + wide.  Stay tuned and see what new adventures come our way and the distances Bliss will reach with her evolving speech.

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Sounds of Stillness

The official start of fall is less than 24 hours away…

 

This time of year is hands down my favorite.  Everything begins to shift – the color of the leaves, the temperature, the daylight, and the sounds~

 

With this seasonal shift, my husband and I have begun to realize something pretty cool.  Unknowingly, Bliss has given our family a fabulous gift.  The past few weeks especially, she has pulled us into the moment again and again when she hears something.  Our day to day lives that have been somewhat mundane, are suddenly overflowing with her excitement at the identification and discovery of familiar and unfamiliar sounds.    

 

There was a wonderful afternoon earlier this week.  After I worked, I grabbed the ipad and videotaped while Bliss napped.  

 

In honor of taking time to listen, here are a few seconds of stillness – some faint sounds and sights of a moment in time, just on the cusp of fall….enjoy!  


Turning A Page

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If life were a book, the past couple of weeks for our family have been filled with new chapters. Fall is in the air, and the weather has become wonderfully, noticeably cooler ~ We sadly lost a dear family friend ~ A longtime friend was married ~ The Democratic National Convention came to our Queen City, bringing many people and lots of opportunity for small and big businesses alike ~ and Bliss began a new chapter…..she started preschool.

We decided to send Bliss to a preschool close to home and one that I’d had some really positive experiences with.  The director is top-notch, and has been nothing but helpful and attentive to Bliss’ needs, and the past couple of weeks have proven that we chose well~

Bliss’ teachers are amazing!  They have called each time her implant’s processor has stopped working, due to a battery issue or something quirky.  It’s been great, because if I’m available, I can run her back-up processor to her school, so she has very little time without hearing. And most importantly, we get the sense that Bliss’ teachers want her to hear during time at school. They care, and that is huge!

New words have been springing forth from her, as well as some new sassy behavior:) She just turned 22 months, and she is quickly approaching two.  She says “More” and it sounds like “More.”  She said “Spoon” and it was clear.  She spontaneously said “Cheese!” when I brought it out of the fridge. She is attempting the actual word “Airplane” and also approximated “Olive Oil.” She also has learned “No!” with the head shake. However, her new big word is “Apple.”  It is so clear and in context – it blows me away every time she says it.  What is even cooler, is that her class is currently studying “Apples” during the month of September – she heard and learned “Apple” at school.  It is like a switch has been flipped, and her new environment made up of the best language models possible, her peers, has spurred on her development in a new, unforeseen way.

Also, another unforeseen action has been happening at home. Her processor and hearing aid have been removed a lot, especially when mom and dad are not giving attention like it is desired. Sometimes the removed processor is graciously handed over to mom or dad, and sometimes it’s thrown like a boomerang.  Last week, I lost it, broke down and cried when the processor came off for about the 20th time.  My husband is the man, and he talked me down. With all of the high points of the past couple of weeks, this new behavior has definitely been the most challenging. We think with her new life change of preschool, Bliss is letting us know who is ultimately in control of wearing her “ears.”  It keeps us on our toes and tuned in.  More on that later!

She is making connections easily now too; For instance, I can ask her to get a book without gesturing. She will go find one and bring it to me.  Also, she is the happiest we’ve seen her. WOW! She is hearing, and she is understanding.  Thank you CCCDP, Chapel Hill + all of our speech and language superheroes!

We are so excited about Bliss’ new chapter and can’t wait to see how her story will continue to unfold~

*This post is in memory of Fletcher Green~

 

Music To Our Ears

One of the most exciting doors Bliss’ cochlear implant has opened to her is the world of music. She loves it.  Here’s a video of her playing a musical toy – the green turtle, and doin’ a little groove.

 

Singing songs to Bliss throughout each day is another encouraged activity to help strengthen her listening skills.  The “Itsy Bitsy Spider” is her fave, in addition to “Patty Cake,” and “Open Shut Them.”  We also like to make up songs and sing them to her – it’s fun and keeps us on our toes~

We also went to story time at our local library recently. The brilliant storyteller played the Chicken Dance Music, and the kids went crazy.  Every day deserves some chicken dance.

She is learning how to snap, and sometimes will just break into dance when she hears something musical from her environment or in her mind – it’s pretty awesome.  

Now that the dog days of summer are upon us, we plan on having daily dance-offs at our house. Bliss has a “Music Together” CD that she enjoys hearing, and she’ll/we’ll freestyle dance to it when we can.  It rocks, it’s fun and it’s freeing.

On that note, Bliss also has really increased her mimicking, both verbally and vocally.  If one of us lilts our voice or slides from a higher pitch to a lower pitch, or vice versa, Bliss attempts to repeat what she’s heard.  Her dad has a great ear (yup, he’s a daddy-o musician), and they have fun playing repetition with sounds + songs.

This new world of music is a definite score, and we can’t wait for whatever comes next, as Bliss’ discovery of music and expression grow…..for us, it’s a high note.

Sound Bites 

-Yesterday Bliss heard a train in the distance, looked at me, and said, “choo choo.”

-We looked at a book of farm animals yesterday and after a couple of weeks of not repeating “whoo whoo” for owl, she pointed at the picture of the owl and said “whoo whoo.”

-She consistently declares “all done” when she finishes a meal.

-When asked “where is your sippy cup?” she will find it and pick it up.

 

 

 

 

Summer Reading is Sound Medicine

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Every time we visit Bliss’ audiologist, Jennifer, or meet with Amazing E, we’re reminded of one important action that we’re strongly encouraged to take.  Read 10 books a day to Bliss.  This is her daily medicine.

There are other recommended activities that are incorporated into Bliss’ day, however, reading to her seems to be the one action that always resurfaces and that parents and caregivers are encouraged to implement.  It’s benefits are far-reaching and strengthen language development in addition to overall success in literacy.  Check out this article available online, that maps out why reading aloud to a hearing promise child is so beneficial, just click here.  

There are several different tracks parents and caregivers can choose from in terms of how a child with hearing promise can learn to communicate.  All are wonderful. All are valid.  Each family in NC with a hearing promise child, is able to choose the path of communication that is best for their child and their family. There are no right choices or wrong choices.  We chose the Auditory Verbal Approach via cochlear implant for Bliss. With this choice, our focus is dual in strengthening her listening and verbal skills during all waking hours, so that listening and speech will develop as if her hearing promise was already fulfilled at birth. Reading is a big part of this development. Moving forward, I will refer to hearing loss as hearing promise.  I heard the term “promise,” in another context, from a fabulous advocate for children, David Griffin.

With the start of summer and warm days ahead, there’s no better time to dive into reading!  Board books are our favorites, with lots of pictures.  Mostly we try and read about 3 to 5 books after breakfast.  Then we read about 3 or so right after lunch and pre-nap. Finally, her dad reads to her every night before bedtime. Now let me interject, we try our best to meet the 10-book-a-day quota. Some days are better than others, and sometimes we meet it and sometimes we don’t.

Another fabulous adventure we’ve discovered is the Public Library!  My sister-in-law, a talented teacher, told me about story time for children at the library.  She encouraged going, and we went…we love it!  Not only is Bliss surrounded by other children, but the readings, songs and bubbles are rockin’.  Not to mention the best part, it’s FREE! We’re spending a lot of time at the library this summer; between story time and free theatre, we feel like we’ve hit the jackpot. Our public library is a brilliant hybrid which consists of a children’s library + our city’s professional children’s theatre, all under one magnificent roof.  Check it out here.

Keeping up with the book quota and other activities for Bliss’ hearing promise, we have had little time for TV.  We decided early on that she would not watch TV during her first couple years of life.  I know, we’re crazy.  It was a personal decision.  On a realistic note, there have been occasions where I’ve needed the arms of an octopus, the patience of a saint when the implant’s processor was being eaten, and the discipline of I don’t know who, when I wanted to rip my hair out….and that fabulous TV has been a life saver, buying me a few minutes to deal with what’s at hand.  Backyardigans, I could kiss you!  Ironically, Bliss seems to have very little interest in TV, and usually watches for a little bit….then she’ll wander back to her toys and eventually her books, wanting mommy to read. Blessing or curse? Perhaps a little bit of both.

Reading has also helped us connect with Bliss in a fun, creative way. She understands the action “turn the page,” and anticipates page-turning like nobody’s business.  She is beginning to respond and anticipate changes in stories as they unfold. For instance, she’ll scream or hide her face when the bear wakes up in “Bear Snores On,” and she’ll relax in dad’s arms when she hears “Goodnight Moon.”  She is also pointing to specific characters and making appropriate sounds (i.e. “woof woof” for dog, and identifying the pictured dog with her finger). When she is in her playroom, she hangs out by her books.  Sometimes she’ll just take books off the shelf, one by one, and sometimes she’ll pick out which ones to be read next. Empowering.  

Some of our favorite reads include, in no particular order, “Stellaluna” by Janell Cannon; “Goodnight Moon” by Margaret Wise Brown; “Have you Ever Tickled a Tiger?” by Betsy Snyder; “Gossie” by Olivier Dunrea; “Pooh and Friends Marching” by Healthy Kids; “Farm” by Usborne; “Clifford The Big Red Dog” by Norman Bridwell; “Colors” by Bright Baby; “Bear Snores On” by Karma Wilson + Jane Chapman; “Wheels on the Bus” by Troubadour Learning; “Mr. Wishy- Washy” by Joy Cowley; and finally, “Madeline in London” by Ludwig Bemelmans. 

Also, below are a few fun links about reading – check them out!  Summer is here, and while there is plenty to do outdoors, be sure to take time and get in your daily dose of reading….for us, it’s sound medicine.

Summer Reading Inspiration:

Barnes + Noble Summer Reading

New York Times Best Seller List – Children’s Picture Books

PBS, Raise a Reader this Summer

Reading Rockets

Scholastic Summer Reading Challenge 

Quick Sound Bites:

-One morning this week, without her implant processor on, Bliss said “poo poo,” to let me know it was time to change her diaper.

-She spontaneously says “bye bye” now, in context.

-She is pronouncing the word “more” with improved clarity every day…especially at meal time!

-She pointed, identified and said “ball” when she saw a picture of a ball in one of her books.

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Goodbye Ms. Willow Oak

Fairies

When I was a little girl, there was a big tree beside our house.  My mother told me and my sisters that fairies live in trees, and that it would be good to bring them gifts like acorns, leaves and surcies that fairies would find lovely.  She also encouraged us to have pretend parties beneath the tree – basically, to imagine and enjoy.  I am 41 years old, and I remember this.

Today we said goodbye to a faithful friend, Ms. Willow Oak. She lived in the front yard of our house we believe for 90+ years, and she weathered a lot.  She was a bad ass tree.  So this morning, the Butterworth Tree Angels arrived to carry her down to earth and bring her back to dust.  

Then several things happened as the day unfolded….

I posted a pic of her best angle on Facebook this morning, and several friends posted comments. Lucy Hazelhurst, a talented and wonderful woman, suggested we read “The Giving Tree” in honor of Ms. Willow Oak. I think Bliss will love it (It will also fulfill the daily book quota we adhere to for speech therapy, more on that later).  

Our friend, Jory, suggested we have a tea party on Ms. Willow Oak’s stump (brilliant idea!).

And finally, mid-morning, we enjoyed a playdate with our friends visiting from Alabama, Patty, Sofia + Nathan. When we arrived, Sofia was wearing green fairy wings, and called herself the “Fairy Queen.” Her mom, Patty, then found a pink pair of wings for Bliss to don.

Tree, tea + fairies….it feels like life has come full circle.  

So on this day and in honor of reading, and most importantly, imagination, we raise a teacup to Ms. Willow Oak~

Ms

 

 

Sounds like a Superhero Strategy

As soon as Bliss was diagnosed with severe and profound hearing loss, support nets began to fly in. North Carolina is a great state to live in if you are hearing impaired.  The combined state supported programs that are in place to help parents, children and caregivers serve each and every child with hearing loss until s/he is is 21 years of age.  Let me tell you, these programs and their employees have been a lifeline to me and my family.

Within days of her diagnosis, Chapel Hill had effectively communicated Bliss’ situation to all of the proper agencies, and they in turn contacted me.  In less than one month, we had a team in place to support us: Amazing E with the NC Early Intervention Program for Children Who Are Deaf or Hard of Hearing, Marvelous M + Soawesome S with Mecklenburg County Children’s Developmental Services and Gogetem J with Beginnings (yes, they each deserve a superhero name).

These folks came to our home, explained their roles in Bliss’ development and designed schedules, strategies and lessons that were immediately put into place.  Was I shocked + overwhelmed, like Lois Lane in Superman? You bet.  However, as a result, we meet weekly with Amazing E, monthly with Marvelous M or Soawesome S + at 4 years of age with Gogetem J. Pretty darn cool if you ask me.

From these meetings, come the core of Bliss’ development and the pearls of her growth.  We’ll share specific strategies that are used day in and day out and hope to give several “sound bites” each post, about Bliss’ daily discoveries.

On that note, I have to thank a friend of many years, Michael N., who is behind the superhero inspiration for this post.  Michael N. recently told me about a fabulous new Marvel Superhero named “Blue Ear,” who uses a special listening device for super-sonic hearing.  “Blue Ear” was created in honor of a four year old hearing impaired boy. It is an inspiring and heartwearming story, check it out. Just click here to read more, and be sure to stay tuned….

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Woof Woof

Tonight my husband read Bliss an Elmo book, where Elmo is searching for his dog.  Ironically, today we worked on Dog, woof woof, as one of her identifying animal words.  He asked her on each page where the dog was.  She pointed to the picture of the hiding dog on each page, and accompanied it with “oof oof.”  We are toasting B tonight with a glass of vino!