Happy 1st Hearing Birthday!

One year ago today, Sean's CI's were activated, giving Sean access to a whole new world of sound through the use of cochlear implants. 

Reflecting back on this past year I think about the countless ENT, Audiology, and Speech Therapy appointments that we have had to help Sean get to where he is today.  We can't thank all of our family, friends, doctors, therapists, and teachers that have helped us along the way.  And let us not forget, that a child with cochlear implants true success is dependent upon the work done at home with the family.  :)  Sean is so lucky to have a big brother who works hard with him to develop speech and language.  Just yesterday at speech therapy, Blake was amazing in asking Sean for two critical elements.  Blake spoke clearly, slowly, and paused to give Sean enough wait time to process! 

While our journey is still not over, we are forever grateful for the love and support we continue to receive.  We celebrated by visiting our library, where we listened to Pete the Cat books and sang songs.  Pete the Cat even made a special appearance!  We spent the early evening playing at the beach then headed home for pizza and a special cookie cake for Sean! 

A year ago today...

Sean had his cochlear implant surgery.  A surgery that would change out sons life forever.  We are forever grateful to Dr. Moody-Antonio and her team. 
Because of Sean's LVAS and Mondini Malformation diagnosis' we had the mindset of "when" Sean needs cochlear implants, not "if," which helped tremendously in transitioning from hearing aids to CI's.  We are so proud of all that our little man has accomplished in such a short amount of time. 

Sean knows his ears!

Sean knows when his CI's are not on the correct ear! Not just because the sound is different, but he now knows based on looking at the color on the CI!  The CI with the red dot goes on the right ear and the one with the blue dot goes on the left!  Such a smart little man!  Mr. Independent would love to turn on his own ears too, but he hasn't mastered holding the on button down long enough to do so. He will sometimes get it by luck, but we would rather him not mess with the buttons right now! :)

 

"Ears broken!"

After a long day and evening spent watching baseball at Harbor Park, Sean brought me his ear and said, "ear broken!" Way to go little buddy!  He now can tell when his CI has turned off or not working.  Pretty impressive that he could tell that just one ear went out!

Dryer buzzer

I guess it's a boy thing, wait a minute, it's a Jennings thing, but Sean gets the biggest giggle out of fart sounds!  See the picture below of Sean playing with the "fart app" on the iPad.  Lol! 
We've been working on having Sean just say "excuse me" when he farts!  That's because he will usually say, "Sean farty!!!"
I can't forget this funny...While in the family room, the dryer buzzed (quite a distance from Sean), and without skipping a beat, Sean says, "excuse you daddy!"  Of course we were proud of Sean's good manners, but even more excited that he heard the sound from such a distance.  Now we must work on discrimination of fart sounds versus the dryer buzzer!

Auditory memory growing

It's been amazing to see/hear how Sean's auditory memory is growing.  Auditory memory is the ability to process information presented orally, analyze it mentally, and store it to be recalled later.
Just the other day Sean said, "See my Buzz Lightyear shirt?"

Happy St. Patrick's Day!

Team "CI Super Heros"

Come join our team, CI Super Heros, as we bring awareness for cochlear implants and support The Children's Hospital of the Kings Daughter's.
You can register for the 8k run/walk, 2mile run/walk, or kids run.
http://www.runwalkforthekids.org/

Letter recognition

Sean amazes us with his recognition of letters.  Thanks to his teacher, Sean and his classmates locate the letters that are in each of their names on the alphabet chart.  So it's pretty cool to see Sean recognize letters when we are out and about.  He will usually say something like, "S, that's my S!"  "B, Brandon." "H, Harper." "L, Laurel, Lacy.""D, Drew." "R, Ramiah." 

Pretty impressive fine motor skills!

Families to Families

Today we attended our first "Families to Families" event in Norfolk.  It was great meeting and interacting with other families who have deaf/hard of hearing (D/HOH) children.  We were pleasantly surprised at the number of people signing.  Of course I loved that the event had a theme, "The Very Hungry Caterpillar!"  All of the activities for the kids were connected to caterpillars and butterflies.  There was face painting, play-doh fun, balloon art, and a caterpillar crawl tunnel.  The parents got together and discussed strategies for reading to our D/HOH children (see below).  The event concluded with a deaf mom signing the "The Very Hungry Caterpillar," while an interpreter read aloud. 
One highlight of the event was talking to a 30-something woman.  She was HOH until 14, when she lost all hearing.  At 29, she received her first implant.  At 31, she received her second implant.  So, she was completely cut off from sound for 15 years before being implanted.  Talking to this young woman reminded me of my need to learn and teach Sean more sign language.  It's his second language/back-up language, if you think about it.  :)  Thanks to the internet there are SO many online resources for learning sign language.

"OMG"

"Oh my gosh!" Words I heard from Sean this morning!!! LOL!

Ringworm, really?!

I can't tell you how many times I have spotted ringworm on my students.  So when Sean developed this weird looking rash right behind his processor, the thought of ringworm didn't even cross my mind!  My first thought was eczema that got a little out of hand, followed by an irritation from the processor.  Never did I think ringworm!  Of course we couldn't let this funky looking rash go without a visit to dermatology!  Diagnosis: ringworm! 
Really?  Of ALL the possible places to develop ringworm, Sean had to get it right behind his processor!!!
This made for an interesting 10 days.  Sean wasn't allowed to wear the processor behind the ear and refused to wear it with my adaptation of a longer coil cable and clip to his shirt.  So for 5 days, Sean had to adapt and listen with only one ear.  Of course I was a nervous wreck sending him to school  and stressing about how tough it would be for Sean's brain to have to adapt to listening with one ear.  Not surprising at all, he did very well! 
The real challenge was when the area was clearing up, we tried to reintroduce the processor and Sean rejected it.  :( It was as if the sound was too loud, not that the processor was uncomfortable.  Talk about another battle with an already stubborn toddler!  After a couple of days of trying, we were able to get Sean back to wearing both processors!  

Happy Valentine's Day!

The Doctors

The television show, The Doctors, aired a very powerful cochlear implant story today.  If you missed it, you can click on the link below to view!  

The story is about a mom who lost her hearing close to the age of 30.  She has gone without sound for the last 15 years.  She finally decided to get a cochlear implant and hears her 8 year olds voice for the first time!  

The story is a little graphic, but definitely gives awesome details of how a cochlear implant works! 


http://www.thedoctorstv.com/main/show_synopsis/1184?section=synopsis

Preschool Eval and Audiology check

Today was filled with appointments for Sean!  Preschool Evaluation and Audiology check-up.

Music to OUR ears...

"Sean is one of the most impressive preschoolers with cochlear implants to come through our doors!"  
We received these comments from the City of Chesapeake Public Schools Preschool Evaluation team.  I can't tell you how much joy these words brought to my heart.  We (Sean's team) have worked so hard to get Sean where he is today.  It's amazing the progress, in just 7 months, our little man has made, learning to listen and speak.  There's no denying that the last 20 months have been VERY challenging!  Filled with understanding and accepting multiple diagnosis' (bilateral sensorineural hearing loss, mondini malformation, Pendred Syndrome), hearing aids, ENT appointments, audiology appointments, booth testing, speech therapy 3 x's a week, cochlear implant surgery, activation, "learning to listen," and not to mention the "terrible 2's!"

Sean has been receiving speech therapy services through Early Intervention for the last 18 months.  Once he turns 3, this April 6th, these services come to an end and the next step is to be evaluated by the public school system to see if Sean is eligible for continued services.  Based on Sean's medical diagnosis, Deaf/Hearing Impaired, he should be eligible for special education within the public schools.  So, as excited as we were to hear from the preschool evaluation team, we now worry that because he is doing so well, it may be tough to receive continued services.  It's clear Sean still has a ways to go "learning to process language."

Oh, I can't forget to mention that the nurse that served on the Preschool Evaluation team was Buzz Lightyear's Mom!! LOL.  At first, I thought she was joking that her son was a huge Buzz fan and just "thought" he was Buzz Lightyear.  Nope, her son is THE Buzz Lightyear, in Disney World that is!  

Sean did amazingly well with his Audiologist, Mike, today.  He got a little teary eyed when the "black cord" had to be hooked up to Sean's processor for some "fine tuning" of sound.  I guess it's the association of the "black cord" being connected to sound that scared him at activation.  It was pretty neat hearing Sean be able to let us know when the processor was turned on or off!  Such a smart boy! 
Once the processors were fine tuned, we headed into the sound booth!  Lucky for Sean, Anne, his first Audiologist who fitted him for HA's, was at CHKD, and she got to go in the booth with Sean and do his first "conditioned response" booth test.  So instead of listening and looking for sound and having an animal light up and make noise, Sean now has to listen for the sound and once he hears it, he placed a ping pong ball in the bucket!  Thanks to Anne, Mike, and a third Audiologist, Sean did amazingly well and is a start CI student in the booth!

How are the implants?

I wish this conversation could have been video recorded because me trying to retell won't do it justice!

While at a going away party for one of our fabulous parent volunteers, the following comment occurred during conversation with two of my co-workers. 

Jill: (knows about Sean's CI's) So, how are the implants doing? 

Andrea: (new co-worker, who does not know about Sean's CI's) - Nearly chokes on her food, is speechless, and shocked at such a question!

Me: (laughing hysterically)- I clear up the misunderstanding that Jill is referring to my son, Sean, who is deaf and received cochlear implants in June!  And that these "girls" are real! LOL! 

Putting his processors back on!

We've been working hard to give Sean some "independence" and confidence when it comes to putting his processors back on.  In the past it was so frustrating (for both mom and Sean!) when the magnet came off his head, while driving in the car, and Sean wasn't able to fix it.  I'm happy to report that when the magnet comes off of Sean's head now, HE is the one that fixes it!!  :)  Next step, work on putting the entire processor on his ear correctly. 

Snowflake in Timeout!

Sean cracks me up with how well he can imitate and repeat words and non-verbal gestures.
Just the other day, Sean took his little stuffed horse named, "Snowflake," and put him in our "time-out" spot.  Hilarious!  Sadly I was too late getting the camera.  

6 month check-up

It's hard to believe that it's been 6 months since Sean's surgery and activation!  We met with Dr. Moody today and she was thrilled to see how well Sean was doing with his CI's.  I know she enjoyed hearing Sean say, "Dr. Mood-dy!"  Sean's implants are doing exactly what they should be right now.  Our visits now with Dr. Moody will be annual, unless any issues arise with the internal device. 
I noted, and Dr. Moody agreed, that Sean's neck looked to have "thickened" some over the last few months.  Dr. Moody will be monitoring Sean's thyroid for the next few years, since he tested positive for Pendreds and has a good chance of developing a goiter, and will then refer us to an Endocrinologist.  

Clarity of sounds

Sean is doing amazingly well "learning to listen."  I've noted some issues with clarity of sounds and how Sean comprehends them.  For example, while driving to school we were talking about it being "Thursday."  Well, Sean thought I said, "Birthday," so he started singing, "Happy Birthday!" LOL!
Guess it's time we make an appointment with Audiologist Mike to do some fine tuning.  :)