CHKD Holiday Hearing Loss Party

CHKD puts on a very special holiday hearing loss party each year.  Blake and Sean look forward to seeing Santa, Mrs. Claus, and the reindeer, I mean St. Bernard dog!  The party is a great opportunity for families with D/HOH children to interact and meet.  The audiologists, therapists, and ENT team members do crafts with the kids and an awesome book exchange.  This years event was extra special, as we were able to get a picture with Sean and his CHKD team: Surgeon-Dr. Moody, CI Audiologist-Mike, HA Audiolgist-Anne, and Speech Therapist-Barb! 

Christmas card

The first card was our official Christmas card! Further below is one I created as a joke for our immediate family, but I couldn't resist sharing on the blog!

It's been 5 months since activation...

Wow, time flies when you are having fun!  This road to help our son hear has definitely had it's ups and downs.  Thankfully we have had more UP's!  It's amazing to see how much Sean's speech and language has developed in such a "short" period of time!  The sky is the limit with this kid! 

Got Static?

This time of year static is always a nuisance, but now it's something we have to "worry" about affecting Sean's processors.  Whenever we are at the playground and Sean wants to go down the plastic slides, we take Sean's processors off.  Of course, it's stressful worrying about all the static around the house as we walk in our slippers, etc. 

"Scout!"

Our elf, Scout, has landed!  He arrives every Thanksgiving to keep a watchful eye on the boys.  Each night Scout "reports" back to the North Pole and lets Santa know how the boys are behaving!  Scout reappears each morning in a different spot.  This year Scout was really creative in his hiding spots and decided to have some fun playing with the boys toys! 

Scout wanted to go fishing in the bathtub!

Scout playing with Legos!

Scout's official landing, with note and all!

Scout decided it was time for some dreidel games with Buzz and Woody!

Scout is a true Skins fan!  HAIL!

3-4 word sentences

Sean has definitely hit a growth spurt in speech and language!
He often will be "talking," we call it jargon because most of the words we have no idea what he is saying, but he knows what he is talking about!  To respond to his jargon, we will say things like, "really?" or "wow, I didn't know that."  But the occasional clear word will appear and that's when we can officially take part in the conversation!! lol! 
A few of the 3-4 word sentences that Sean said this week that had me laughing were:
"Bye-bye baby Peyton" (what a tongue twister!)
"Good job mommy potty!"(so nice to have confirmation that I'm using the toilet properly!)

More than 3 words or words with a lot of syllables make it tough for his brain to process and translate, so we have to break up the sentence.  For example, "Can I have...the truck please?"

Happy Thanksgiving!

We have so much to be thankful for this year!  Most importantly, family, friends, and Sean's new "ears!"  We celebrated Thanksgiving at MeMe and PaPa's house with Auntie Pam and Uncle Buck! 

Tryptophan coma

Showing Auntie Pam pictures from our trip to Disney World!

Disney World

Wow, what an experience! To celebrate our 10-year Anniversary, we decided to take a trip to Disney World with the boys!  We are so glad we did because it gave us a week together, away from home, no routines, no cooking or cleaning, no therapies, no homework, etc.  Magical memories were created and I really feel that this trip is were Sean's speech began to take off!

Terrible 2's times 5,000!

This post is pretty much the reason I have been so behind in blogging! 

Sam and I refer to Sean as "Double Dose."  As in, double dose of stubbornness, thanks to his Taurus mom and dad! 

Sean is a very strong-willed 2 year old, and add deaf to that, an we have a VERY challenging toddler!
We currently are dealing with sleep battles (head butts us, hits us), food battles (very picky eater), time out battles (refusing to stay in timeout).  And when he gets really mad he will pull off his processors and throw them...all the while hoping that he doesn't damage them!  Supernanny we need you!!!

Fun with Mr. Potato Head!

Sean had so much fun at AVT therapy today with Mr. Potato Head!  It was such a great opportunity to practice teaching pronouns, colors, body parts, and taking turns!

Potty Training

Someone is very interested in going pee on the potty and does so, on the little kid potty, every night before bath time.  As if learning to listen and process sounds, speech, and language isn't hard enough, Sean B. wants another challenge!  Sean sees some of the kids in his class using the potty, as well as Blake, so it's only natural that he want to "independent," like the rest of them!  Plus Sean is at the age to start potty training.  

Yes, this is very exciting, but now we have another "CI worry" to think about...having a processor drop in the toilet! The damn things cost nearly 9 k each! 

ABC's

Sean sure is learning his ABC's and 1,2,3's! LOL!  It's the cutest thing to hear him walk around the house saying the ABC's (thanks to Leap Frog).  Now, if only I could get a video of him saying it!

Happy Halloween!

Happy Halloween from Ninja Blake and Bumblebee Sean!  Both boys had so much fun dressing up and to our amazement, Sean kept the mask on his face/head the entire night!  It was awfully cute listening to our little man say, "trick or treat" and "thank you," at each house. 

Speech homework

Here are a few things we will be working on the next few weeks:

*Start using and giving examples of asking for things- "Can I have...juice please?"
*Pronoun usage- "This is for you, and this is for me."
*More What and Where questions
*Monitoring Sean's voice levels- he doesn't really hear how loud he can be!

We also have noted that Sean is showing some resistance to the Ling 6 and will respond, "no," when we try and do our morning Ling 6 sound check!

Blake's comments

Funny: Sean has trouble with the /c/ and /k/ sounds and when he tries to say things like "Momma's coffee," it sounds more like "Momma's aooffee."  He tries so hard with the /c/ sound, yet nothing really comes out.  Just the other morning, Sean was talking about my coffee and because the /c/ sound appeared to take a lot of work, Blake commented, "Don't hurt yourself, kid!"  LOL!  Wonder where he heard that phrase from???!!!  Daddy?!  

Sweet: Blake and I were reading in his bed, while Sean and Daddy read in Sean's room.  It was time for bed, and Sean came in to Blake's room to give him a big hug and kiss.  Blake gave his little brother a big hug and kiss, then rolled over, and said to me, "I REALLY love Sean!"  Such sweet and special words for a mom to hear.  :) 

"1, 2, 3, 4, 5..."

Sean really is understanding counting and 1:1 coorespondence!  It's the cutest darn thing to hear him count things!  I've posted a video in the video bar of him repeating us count, but recently he has been doing it on his own to count things! 

"Let's Go Yankees!"

It's music to our ears when we hear Sean say, "Let's Go Yankees!"  See the video on the video bar! 
Now if we can get him to understand that not EVERY team playing a sport is the Yankees!  lol!

The Itsy Bitsy Spider...

Check out this spider that was in our backyard this evening!  Sean was so intrigued!  It was also a great time for us to practice getting that /d/ sound in the middle of "spider!" 

Brotherly love

Just a few pictures to show how much Sean LOVES his big brother, Blake.  I just love the one below where Blake is helping put Sean's processor back on his ear! 

Sean's "hearing age"

Sean has made amazing progress in his ability to repeat words and familiar phrases.  We often refer to him as a parrot!  It's exciting to see how good his articulation is, but at the same time we are noticing that Sean is not truly processing the words and sounds he is hearing.  We must remind ourselves that he is only "3 months" old as far as "hearing" goes and how many 3 months old to you know that are processing speech and language?!!  lol.  Just when we get a little nervous about Sean's ability to process speech and language, we reminder ourselves that is still very young, when you consider his "hearing age." 

Little kid, Big attitude!

This picture says it all...It's a good thing Sean is so darn cute, because he sure likes to give us a run for our money!
Miss Renee has been pleased with his last few ST sessions.  She reported that he now knows his name and responds, "Sean Jennings!"

Pizza and movie night

MAPping and Booth testing

Thankfully we were able to squeeze in a mapping this week because Sean's listening and attending was definitely declining.  Both his teacher and speech therapist noticed he wasn't listening as well, and it wasn't just because he is a "trying toddler!" It was time for a little tune/turn up by Sean's Audiologist, Mike.  Thankfully this mapping was painless and Sean didn't seem bothered by the "black cord" one bit!  Mike made the changes to Sean's programs and it was into the booth for testing.  It's amazing to watch Sean in the sound booth responding to sounds at 30db's.  The three new maps should hold us into the holiday season! 

Speech eval

The past two ST sessions with Barb consisted of our annual evaluation of Sean's speech, language, and listening.  He was given the "CASTLES" test, a Pre-school language scale for listening, language, and speech.  The other test was, the Rossetti Infant-Toddler Language Scale, to determine language comprehension and language expression.
The results of these tests are based on a child's chronological age.  Since Sean's "CI hearing age is only 2 months", it's a bit tricky to to determine how well he is doing.  Overall, Sean's auditory comprehension and expressive communication skills are, "within the average range of functioning based on chronological age expectations!"  The Rossetti scale showed that Sean's language comprehension and expression are solid skills through 18-21 months; and scattered skills thereafter.
We know that Sean continues to require a lot visual cues to listen and does rely heavily on watching the speaker's mouth (lip reading).  We will continue to learn and use strategies and techniques to enhance Sean's listening and spoken language! 

Sick again?!!!

Poor Sean B. can't catch a break! On Wednesday of this week, Ms. Renee called and said that Sean was not attending to any sound and wasn't really himself. We attributed it to being tired from the weekend and the possibility that we needed to "turn his ears up," and move to the final MAP before we see Mike again. Moving him to map/program 4 made a big difference on Thursday. By Friday he sounded congested and by the evening it was all in his chest, making it hard to listen to him try and breath. ;( We had the cool mist humidifier and Vicks vapor flowing last night. It helped some, but I could tell he was very uncomfortable, waking every couple of hours.
This morning was spent at our new pediatricians office, who we really like by the way! Diagnosis: croup! After a Steroid and breathing treatment we were on our way still sounding pretty rough. Thankfully this only lasts a couple of days and he should be good to go for Monday!
I did take a video of him in the doctors office, singing "Five Little Monkey!"you can tell how hoarse the poor kid is. ;( Will upload when I get on my laptop!

Back to school...

Feels like we just got out of school! It's been an extremely busy summer, that's for sure! I couldn't imagine going through everything with Sean and his CI's during the school year! Talk about stressful! It also feels like just yesterday that I was chasing Sean around to put his ears on for the umpteen time!

I have to admit I was a bit nervous about school this year for Sean. I worried about having to teach and educate his teachers about his CI's. Both how to operate/troubleshoot the CI's, and how to best meet the needs of a deaf child who is just "learning how to listen" with this mew technology." In addition I worried about the new classroom acoustics, the fact that there are now 8 kids instead of 4. Then I begin to wonder about the Oral Preschool in Norfolk @ ODU for children 3+! Should we consider looking into that program for when we transition out of Early Intervention (EI) and into the public schools with an IEP? I'm a mom, I'm supposed to worry, but damn I don't need the added stress! ;)
Thankfully Sean is one smart cookie and will do just fine at Barefoot. Plus he will be with big brother Blake for another year!

Asking for ears!

Sean: "Ears?," while looking around the room.

What a wonderful way to start the day with your deaf child asking for his CI's aka "ears."  Today Sean woke up a bit early, 6:10 to be exact, and climbed into our bed.  Sam was on his way out the door for work and I was in bed checking email on my laptop.  Sean wanted his ears so he could hear his favorite movie!! Sean's "moustache" obsession is a bit much, but it helps me finish getting ready for work by letting him watch The Lorax for a few minutes.

Labor Day weekend!

This Labor Day weekend we traveled to Poppy's water house, aka, Petit Tresor!  Blake was in heaven, crabbing, kayaking, fishing!  Sean enjoyed the new sights and sounds (osprey, crabs, waves crashing on the rocks), on the Miles River.

Concussion

Talk about scary...Blake and a buddy collided into each other at a pool party and Blake unfortunately fell backward nailing his head hard on the ground. After a little confusion, ice to head, drowsiness, and finally throwing up, we headed to the ER. Blake was such a big boy as he underwent a CT scan in the "big donut!" Thankfully his scans came back clear of any further damage and we were told to have him lay low for the next 7-10 days. What would be an ER visit without having Sean join in on the "fun?' This same day Sean had been running a temp of 103 and just looked miserable. His fever wouldn't budge and he messed with his ears a bit. Being that it was a Saturday we opted to play it safe and make sure he didn't have an ear infection! Thankfully his ears were clear and whatever he had was viral! Both boys seemed back to themselves towards the end of our long ER wait. They both scarfed down pizza since we had not eaten dinner!

"Mustache!"

Sean's FAVORITE movie, The Lorax is by far his biggest obsession! I'm sure it's because the mustache resembles that of Poppy's! Or it could be the upbeat music that he can now hear and likes to move to!
This picture below just goes to show you how obsessed he is! Movie playing on both the iPad and iTouch!

"STOP!"

If I hear Sean say, "stop," one more time, I'm gonna scream!!!  LOL!  "Stop," is his favorite word to say these days and boy is he one stubborn, independent, toddler!  We had to laugh tonight, when reading and singing before bed, Sean decides to take off his ears and say, "stop!"  I guess he didn't like my singing of, "I've Been Working on the Railroad!" 

I've been so behind in updating the blog, probably because we are so busy "learning to listen" and speak!  Sean is like a little parrot, attempting to repeat every word and phrase!  Some words are pretty clear, others will come with time!  I will do my best to get some more video footage up of our little guy, especially some footage of him saying, "STOP!"

Congenital Deafness

We have been requesting genetic testing for a year now, unfortunately insurance kept denying our request.  Thanks to our wonderful and persistent team, we were able to get genetic testing results, giving us more information on Sean's hearing loss.

Sean has the three following syndromes.  The last one, Pendreds, is a new diagnosis.
All three are complicated disorders, but are often interconnected in people with hearing loss:

Enlarged Vestibular Aqueduct Syndrome (LVAS/EVA)- An abnormality of the inner ear, which causes hearing to fluctuate, hearing is progressive, and causes issues with balance and vertigo. 


Mondini malformation- Sean's cochlea did not fully form correctly in utero.  This was observed by Dr. Moody in April, on Sean's CT Scan. 


*Pendred Syndrome- Genetic testing came back positive that Sean has Pendred Syndrome.  Receiving this news means that in essence it is deafness associated with thyroid disease.  As Sean gets older, we will need to monitor his thyroid, as he has a good chance of developing a goiter.

Pendred syndrome is autosomal recessive. Of course I had to do a little research on what this means, but basically, Sam and I are carriers of a gene for hearing loss and Sean ended up with both recessive genes, causing hearing loss.  1:4 chance of hearing loss, IF both parents are carriers of the recessive gene causing hearing loss.  Below is a cute picture of how to easily understand this genetic stuff, plus a great link too!

      http://raisingdeafkids.org/hearingloss/genetics/inheritance/recessive.php

Awesome week of "Audition only" during speech therapy

Sean was on fire this week listening and repeating Ling 6 sounds, colors, and animals! 

Coincidence?

I think not!

A weekend on the water would not be complete without eating the crabs we caught.
Poppy and Blake cooked the crabs and I prepared the table for our feast!  Newspaper from 12 years ago was in the shed to be used for crab picking!

Look what article was on the front of the Health section as I prepped the table!!!

3rd mapping and booth testing today!

It's hard to believe that we were back at CHKD this morning for our 3rd mapping!  Thankfully these last 2 weeks have been much better than the ones prior!  For the most part, Sean is doing a great job of keeping his processors, aka "ears," on and is now seeing, or should I say, "hearing" the benefits of the processors!
Our appointment today was at 8:30 a.m., which was a bit stressful getting into Norfolk during rush hour, but ended up being the best appointment yet!  Our Audiologist, Mike, had Sean go in the booth to play a listening game of "Hi bunny!"  Testing how well Sean is hearing with one processor at a time.  Each time Sean heard the "noise," he would turn and a bunny would light up. Then  Sean would say, "Hi Bunny!" It was the cutest darn thing seeing him so excited about testing back in the booth!  Blake was a big helper, as he quietly sat in a chair behind Sean.  Mike even let Blake do his own "animal show" by pressing the buttons making the sound booth animals move and groove!!
After booth testing, it was on to make changes to Sean's processors.  The #3 and #4 maps he had the last two weeks we will keep and then add two new ones that will allow for us to turn Sean's sound up a little more!  Should sound be too loud, we can always back the sound down some.
Thankfully I am not feeling as overwhelmed by this whole process and starting to see Sean "Growing by leaps and sounds!" 

"Monkey See, Monkey Do"...

More like..."Blake do, Sean do?!"

Toddlers imitate what they "see and hear" other children and adults doing.  Prior to our second mapping, Sean wasn't hearing much of anything.  D/HOH toddlers, rely so heavily on their sense of sight, that often they see something done once and they will imitate it!  It's scary how quickly Sean picks up on EVERYTHING he sees us do and at the same time, it's pretty cool seeing the wheels turning in his head. 
It's quite comical watching Sean imitate "animated" facial expressions and body language that he has previously seen us doing! On the other hand, he has started this "whack and point," where he will hit us and point at something to be seen.  Guess the last few months of "tapping" Sean to get his attention has come around to bite us in the ass! LOL.  So now that Sean has Sound, we rarely have to tap him and will now be teaching Sean that, to get "our" attention, he simply has to call our name and point! LOL.  I have to admit, it was pretty darn funny when he swatted me on the cheek and pointed to what was on TV.  Of course, I didn't let him know that!!

AVT (Auditory-Verbal Therapy)

Every Monday afternoon, we travel to CHKD for Auditory-Verbal Therapy (AVT), with Miss Barb.  Today Sean had an awesome AVT session, demonstrating that the CI's are working and that he is making great progress, in such a short amount of time "hearing!"

Q: What is Auditory-Verbal Therapy (AVT)
A: Auditory-Verbal therapy is a specialized type of therapy designed to teach a child to use the hearing provided by a hearing aid or a cochlear implant for understanding speech and learning to talk. The child is taught to develop hearing as an active sense so that listening becomes automatic and the child seeks out sounds in life. Hearing and active listening become an integral part of communication, recreation, socialization, education and work.

LVAS/EVA

What in the world is LVAS/EVA, the cause for Sean's hearing loss?

Large Vestibular Aqueduct Syndrome LVAS, also known as Enlarged Vestibular Aqueduct (EVA) is.  This is what Sean has and unfortunately causes several issues with hearing.  Hearing fluctuates (day to day, hour to hour), hearing is progressive, and any bumps to the head, ear infections, or changes in barometric pressure can cause a drop in hearing.   I guess we can say that it's been a blessing that Sean's hearing has been wiped out, requiring him to get CI's now.  In addition to hearing loss, LVAS/EVA causes vestibular issues...balance, vertigo, and tinnitus.  Another part of this RARE 
Thanks to technology I have been in contact with a NC family who's daughter also has LVAS/EVA (Enlarged Vestibular Aqueduct Syndrome).  We met online through the LVAS/EVA support group.  Sarah is the same age as Sean and is doing very well with her hearing aids.  It's been great having another mom to talk with who totally gets the frustration of having a child with hearing loss, due to LVAS/EVA.  While in Greensboro, NC at our family reunion, we had the pleasure of meeting face to face and boy were Sarah and Sean awfully cute together!  LOL!