From Freedoms to N5s

Aiden finally joined the bandwagon and got the (not so) new Cochlear Nucleus 5 system (external) last week (they actually came out within the same year that Aiden was implanted, so they're about three years new and who knows when the next upgrade will be out). We were at a CI clinic who would not submit for an upgrade to the latest and greatest unless the current external equipment was five years old OR it could be proven that the newest equipment allowed for better hearing (which we tried and it didn't work). I get this and we loved our audiologist there, so we decided to just wait it out since his Freedoms were doing just fine. Once I found out though, they wouldn't submit for repairs with his Freedoms either (which were out of warranty), I had no choice but to switch clinics. (Yes, I could have bought the extended warranty offered by Cochlear, but why do that when our insurance will cover repairs/replacements at a cheaper cost ... I just needed a clinic who would submit the claim if anything did happen).

Anyway, it was very hard to switch as we love us some Dr. Rachel. Long story short, she has always went above and beyond for us and it was there that we finally reached a point of stable maps. She was also the one who completely stepped up when I called her from JTC in a tizzy, and said, "I want to try this phonemic mapping approach." As soon as we returned to Ohio, we did just that. She.is.ABOVE AND BEYOND.AMAZING. We are so lucky to have had her as part of our journey, but we had to move on.

BUT, before making the final switch, I called our local CI clinic and asked them if they'd consider the phonemic mapping approach with Aiden, if they wouldn't, we'd stay put. So be it, we met another amazing audiologist who stepped right up to the plate, worked with Dr. Rachel, and Project Talk, to understand this new phenomena of "out of the booth mapping". Our new audi got her whole team on board, including the team's AVT who came in and worked with us AS A TEAM to make sure Aiden's maps were up to par and that he was in fact hearing all sounds of speech (prior to the booth, in the booth, then after the booth). SIMPLY.AMAZING.

and I think this is one of his best maps yet.

OH, and the reason for this post, they submitted for the latest Cochlear N5s.

Some differences:

• much smaller (see pics below)
• Splash proof - he can wear them through sprinklers, in the rain, playing in a pool or in the bath, but cannot fully submerge his head with them.
• older recipients have claimed being able to hear ending sounds crisper with them. Aiden's teacher reported that he seemed more in-tune and chatty since he rec'd them.
• the controller is on the processor - so now it's just the processor, the coil, and the rechargeable battery vs the processor, the controller, and the rechargeable battery;
• the coil and coil cord are separate vs both together; this is good because if one is bad, you just have to pay for that and not both together.
• the processor has a tiny blue dot indicating the left ear and a red one for the right; so helpful t for siblings, grandmas, and friends (and mom & dad) to know which CI goes on which ear.
• did I mention they're smaller??!!! LOVE

Funny story - when they busted out the big ol' briefcase of choices, all Aiden wanted was the PINK CAMO covers.

{SMILE}.

I'm all about encouraging him to play with dolls and play house and all types of toys (in fact, his favorite is his little people house, which I LOVE), but sorry dude, not getting the pink camo covers for your new CIs. His favorite color right now is pink, which is just fine (Ryan always wanted to be the pink power ranger when he was four), but pink camo covers, not happening.

Let's move on. Check out the differences:

front view with Freedoms (and his first ever school picture)

front view with new N5s! you can't see them!

Freedom (minus snug-fit) vs. N5s (which he doesn't wear the snug-fit with since the ear hook is much sturdier and holds on better - we do still use the critter clip though).

Look how much more slender the N5s are

Such a difference! We LOVE them!

and yet to come (once I can get time to edit it), what Aiden thinks of his new CIs.

and for those who haven't switched or recently switched PLEASE NOTE!
We found out the hard way that the 1 magnet on the N5s can be a bit stronger than the 1 magnet on the Freedom. When I was washing Aiden's hair the other day he kept saying "it hurts" so I checked out his magnet sites to find one side was near infection and scabbed over and the other was a little red. I immediately put some Neosporin on the sites and called his doctor and audiologist. I then called Cochlear and they sent me the 1/2 strength magnet (another difference - Freedoms didn't have 1/2 strength), which I received the very next day. He hasn't worn the left CI for two days now as we wait for that side to completely heal. His audiologist told me that she has seen both cases, where the N5 magnet was stronger and on some it seemed weaker. Lesson learned for mom to check the magnet sites much more frequently!

Quick Catch Up

LONG.overdue.UPDATE. 

{in pictures}.
we've been busy.
very.very. busy.

someone got glasses for being farsighted.
more equipment, but have to say,
pure {CUTE.ness}

he also got the new Cochlear N5s!

Check 'em out! You can't even see them from the front anymore!

pure {EXCITEMENT}
(more to come in a separate post)

someone else got a nice fresh hair cut.

because her school had a bout of lice, and unfortunately, so did she.

{EW}

what a trooper she was.

what a wreck her momma was.

my first born turned SIXTEEN.

wow. it can't be possible that I'm the mother of a 16 year old.

{SIGH}

He also got his first job. at Wendy's.

and no, he doesn't have his driver's license and this momma

is in no hurry for him to get it.

in due time, right along with good grades and that one word - responsibility.

{smile}

then there was also the first dentist appointment.

Do you know how AMAZING it felt to sit back and let Aiden

answer all the questions the hygienist asked?

{MIRACLE} 

of cochlear implants.

Ryan and Kailyn have really stepped it up with their little bro.

they read to him.
play with him.
have conversations with him.
argue with him.

teach him.
more so than ever before.

pure{LOVE}

...just because

my boy's gross motor skills and motor planning skills

have skyrocketed.

he's not stumbling near as much anymore, but instead

jumping and running and leaping and everything else in between.

pure{BOY}

he loves to {LEARN}

asking questions ALL.the.time.

enough said.

We lost our kitty Bonz.

 we had him eight years,

he was a part of our family.

it's been difficult for all of us,

(especially his brother Baby)

and he is dearly missed.

{RIP} sweet Bonezee.

Not sure which I'm more shocked from ...

his sentence,

"No thank you mom I don't want to eat no chocolate cake, sorry." 

count them - THIRTEEN {yes, 13!} words!

Or,

the fact he honestly didn't want any homemade chocolate cake.

wow.

the post in which he reads

Aiden was born with a profound hearing loss in both ears; he couldn't hear a jet airplane's engines if he was sitting right next to it. My husband and I immediately dove right into what our options were for raising a deaf child. After we were told about cochlear implants, we read study after study and attended conference after conference and we learned, our son's world didn't have to be a silent one nor one with limited literacy abilities.

We learned we could choose a world of listening, speaking, and literacy for our son.

We learned, that with the proper technology (cochlear implants in Aiden's case) and services (i.e. audiology and auditory verbal therapy), Aiden's auditory centers of his brain could still be accessed, stimulated, and developed into a strong foundation for listening and speaking, and therefore, reading.

We learned quantity matters. In order to stimulate and develop these auditory centers, it was imperative that he wear the proper technology everyday, all waking hours, AND that we talk, and sing,  and point out every.little.thing we hear, and narrate every.little.thing we did, then do it all over again; continuous input to feed his auditory brain. So we did and we still do.

We learned to read, read, read - TEN books a day - yes, TEN. And it's proven very effective.

We learned (first hand) quality matters. REALLY matters (see my past posts on phonemic mapping).

"Speech perception is the only thing that really matters. That's how they learn language, that's how they gain literacy."--Jane Madell

We learned all the above not only directly impacts Aiden's listening and spoken language, but also his phonemic and phonological awareness, and overall, his literacy skills.

We learned this journey is not easy, yet very rewarding. Aiden has been hearing with cochlear implants for three and a half  years now, but it hasn't been until the last year that I can honestly say he's had a strong and stable, QUALITY, map. He still has CI mappings every three months. He also has sensory processing challenges which have presented a barrier to his spoken language, an obstacle that we're starting to break down, through the guidance of our amazing OT.

and with all we learned above, a TON of hard work, an amazing team of professionals, dedication, patience, and consistency, ladies and gentleman, I am proud to present, three and a half years hearing, my deaf son, is actually reading. Everywhere we go, he reads signs (and most of his pronunciations are phonetically correct, sometimes  a little off), and is always asking, "What that say mom?" His interest in letters making words, and words making sentences, and sentences making a story, is soaring.

Take a look at simply amazing moment #678 and add it to my "I can't believe my deaf child is______" list. (and by no means is this a book we read every night. I have read this to him a handful of times, and it's been about six or more months since we last read it - promise).

First Day of Preschool 2

Oh my gosh my blog hates me. It's been so neglected this summer and I have so much to catch up on! Now that all three kids are back in school and our "in-school" schedules are firming up, I hope to have a little more time to things I like to do.

Aiden and I started talking about him going back to school a few weeks back and at that point, he wanted nothing to do with it. He words exactly, "No mommy! I don't want school! I stay home with mommy!" Ugh.

Then we went to meet the teacher. He has the same lovely teacher and aide as he did last year (from April to June), but his classroom is now in the new elementary school and is a lot bigger, has even more center areas, more toys/books, and overall just AWESOME. By the time we made it to the car, he was counting the days until school started.

As Aiden headed off to play with all the kids, I scoped the room. I was nervous because I knew the room was going to be a lot bigger, with windows, and no carpeting. I spoke with his teacher last year about making the new classroom a good listening environment for Aiden, and I have to give her a big kudos as she did a wonderful job making it as acoustically appropriate as possible. Such as:

• Huge area rugs throughout. Now it's not completely covered, but each center area has it's own big rug.
• Tennis balls on the chair/table legs.
• Walls very well covered with bulletin boards, posters, etc.
• The room is broken up into small centers/sections with tall bookcases, shelves, etc as dividers. 
• Soundfield all set up and ready to go
• Classroom is at the end of a hall that is not busy and the outside noise is very minimal since the room is on the opposite side of the building as the playground.

The only thing that didn't meet my checklist was that the two windows did not have curtains. 

This year, Aiden is going back to our district's special education preschool. There are eight or nine kids in his class and four of them are typical peers. He attends from 8:30 to 11:00 five days a week, and it is beyond perfect! This way we are able to fit in AVT, OT, and of course, MT (mommy therapy). I'm not ready to give him up all day and I absolutely love this schedule!

So without further ado, my four year old PRESCHOOLER, who LOVES going to school, knows all his classmates names already, and tells me about his day without me having to pull it out of him!

"Hurry mom! Where's my bus?"

"Mom! I HEAR the bus! It's coming!"

Oh my gosh I'm so excited!

Such a big boy!

Dear Blog,

I promise I have not abandoned you. You have been on my mind so much this summer, but when the kids are out of school, I can't provide you the full attention you need. This summer has been extra hectic between (sometimes) up to five therapy appointments a week between two kids. But it hasn't been all work and no play, in fact, we've been having a TON of fun between all the appointments. 

It's been a summer of "firsts" (and some seconds & thirds), such as, 

Kailyn attending a sleepover camp for six days.

 Aiden feeding his first calf, and

 camping/swimming in the beautiful state of Wisconsin with grandma, (ok, definitely not a first, but it is the first time Aiden will remember it).

So much fun to catch up on, so many updates on all levels. 

So don't give up on me quite yet, there's much more to come.

In TEN days I will have a tenth grader, a sixth grader,

and a {talking quite a bit more, and so much crisper} preschooler.

Until then, I'm off to enjoy what's left of summer with my darlings!

the change (OT)

Last summer, we took a three week adventure to The John Tracy Clinic. Besides hearing phenomenal stories about it, we wanted to get an outsider's opinion on Aiden, as he just wasn't getting those thoughts into words, and words into sentences. Some of our team at the time said he was fine and he'll get there, some said they couldn't put a finger on what was going on but knew something was off, some mentioned apraxia. We had no clear answers and not a clue where to turn. So we turned to JTC.

last year, there's no way Aiden could've worn flip flops, much less dodge his sister's water gun aim; here, he's running in flip flops while yelling, "STOP IT KAILYN", and proceeds to jump over the hose to reclaim his water gun.

While in California, we learned SO MUCH, but the two biggest things I walked away knowing that changed Aiden's journey are:

1. PHONEMIC MAPPING - read more HERE, and HERE
2. PRAXIS/MOTOR PLANNING/SENSORY PROCESSING challenges that were affecting his spontaneous expressive language (among other things). I write about this HERE and pretty much sum it all up HERE.

Although his mappings weren't completely off, the phonemic mappings definitely helped us know he's hearing all sounds and we went from a good map to a great map - big difference. The identification of his praxis challenges made me call and get on a waiting list at a specialized OT clinic before even leaving California. 

Praxis? Motor planning? sensory processing disorder? I still get confused about them all, how they're related and how they're different. They can go hand in hand or not. Aiden has never been officially diagnosed with any certain medical term, but definitely has "tendencies" and challenges of them. So here's my best stab at explaining it (and I am in no way a professional OT, this is just from all my reading and notes taken at Aiden's OT):

What is praxis?

The ability to quickly and efficiently take in sensory information, process it, and respond. It includes, IDEATION (planning the idea in the mind); MOTOR PLANNING (making a plan for the action), and EXECUTION (doing the activity). Different praxis challenges can include apraxia/dyspraxia (both deal with difficulty in motor planning); ataxia (loss of coordination of the muscles); and more. Any of these can be mild to severe.

What is sensory processing disorder (spd)

Sensory processing (or integration) is how our nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. SPD is when these messages do not get organized into appropriate responses, which creates challenges in performing everyday tasks (including speaking and balance). Children with SPD often have difficulty with varying motor skills and other everyday skills which can lead to social isolation.

NOTE - there are SEVEN senses that can be affected - not just vision, auditory, taste, tactile, and olfactory, BUT also, the sense of movement (vestibular system) and the positional sense (proprioception). Aiden has definite disconnects in his vestibular and proprioceptive world, along with challenges having all his senses work as one as they should. And when any of these senses aren't "working together as a team", the child (and the world around him) seems out of sync.

A. Jean Ayres, Ph.D., said it best in her book, Sensory Integration and the Child, 

"Good sensory processing enables all the impulses to flow freely and reach their destination quickly. Sensory integrative dysfunction is sort of a 'traffic jam' in the brain. Some bits of sensory information get 'tied up in traffic' and certain parts of the brain do not get the sensory information they need to do their jobs." (Ayres, p. 51)

So how has all this affected Aiden and what has OT done to help?

First, it was clear our lil' dude's environment was out of sync - both in motor planning, execution, and sensory. For example:

• On off balance days his speech was greatly diminished.
• Some days Aiden would say clear 4-5 word sentences (mainly those that were repetitive to him like, "I want milk please"), others his speech was very jumbled unless speaking in one to two word sentences, and sometimes we couldn't understand him at all.
• Speech involves motor planning of many different muscles and breath control - Aiden had (and still has) difficulty coordinating these two to work together - especially with multi-syllabic words and sentences longer than 3-4 words. 
• Aiden was the kid who played alone, at a table doing puzzles or building with blocks (something stationary and away from the crowd), while all the other kids were running around dressing up, pushing trucks along the floor, etc. It was almost as if it was "too much" for him to handle - visually, gross motor, noise, proprioceptive, and balance wise ... I'd watch this from the two way mirror at JTC ... and it broke my heart.
• Aiden had difficulty performing two different sensory tasks, for example, walking across a set of six balance buckets while talking or following a simple direction, standing still on a simple piece of material to catch a ball, balancing himself while sitting on a peanut ball or moving swing while throwing a ball or picking something up.
• It takes a lot of input for things to register - his muscles need extra input to know where they're at, to know what to do to execute. Aiden does not talk if his actions are too sedentary, it's almost as if he needs to move - to run, to push/pull heavy things, to jump, to swing - to get all the wheels in his brain to work together to produce speech and much more. At his old school, he was having more off balance days than usual, he was not speaking that much, and I attribute this to the classroom way of more "sitting and doing", rather than "moving and doing".
• He wasn't crossing mid-line (reaching across the body with either arms or legs), which is a very important prerequisite for appropriate development of various motor and cognitive skills. He still doesn't have a hand preference, which is not uncommon though with kids with sensory issues.

I can't speak enough of how much Aiden has grown from this therapy. Nine months ago, I walked into our first OT session with Miss Amie. That same day I knew we found our miracle worker and ever since she has been magic. She works with Aiden and doesn't let him stop, doesn't let him fail. She works his sensory systems to train them to work together - heavy lifting or spinning to get his motors moving; obstacle courses that involve a combination of climbing, jumping, visual tracking, listening to directions, balancing, swinging, etc. ALL THE WHILE PROVIDING AUDITORY INPUT and demanding verbal responses from Aiden. She makes him speak and does not go on until she gets a clear answer while he's performing some other demanding task.

And here's what we have received:

• 9 MTHS AGO: Aiden was rarely crossing mid-line; TODAY: No problems 
• 9 MTHS AGO: 2-3 words per sentence, speech was slurred/choppy; TODAY: 5-7 (sometimes more) words per sentence, words definitely more crisp and understandable (although he still can have his off days).
• 9 MTHS AGO: Aiden couldn't stand on one balance bucket without holding onto someone's finger; TODAY: he can walk across six without falling off AND even stop, keep his balance, bend over to pick up a toy on the floor (after listening to a verbal direction), stand back up, and keep on going!
• 9 MTHS AGO: Aiden did not like moving objects - such as the swing at the park; TODAY: He not only loves to swing, but he is balancing himself on a moving object, while visually tracking Amie's hand, to grab "whatever it is" she is holding, then throwing it into a basket in a completely different location. THIS.IS.HUGE.
• 9 MTHS AGO: Aiden could barely walk up the curb without holding onto my hand and he definitely wouldn't walk down our two front steps alone. TODAY: Aiden is jumping two feet from the top step over the bottom step and landing without falling.
• 9 MTHS AGO: When Aiden tried to jump, his feet really didn't leave the ground. TODAY: He HOPS and GALLOPS and JUMPS in nearly every step he takes.
• 9 MTHS AGO: Aiden rarely initiated peer play, rarely talked to peers, and my heart broke that he may be the loner child; TODAY: Aiden is the one approaching kids at the park and yelling, "HEY BOY! C'MON LET'S PLAY!"

I even see a difference in his pain tolerance. While he still has a high one, I definitely see that pain registers quicker than it used to. Aiden is still uneasy on bumpy surfaces and can still have off balance days. He has EVA and I believe that his off-balance days are going to be something he'll learn to compensate for.

We still have a ways to go, and not sure when the end to OT will be, but with our "amazing Miss Amie", along with our other recent changes (school and therapy), we've found our Yellow Brick Road!

and that alone right there, gives me tears.