Wednesday Workout - Self Advocacy

This is something we've been working on for quite some time and will continue to work on for years to come. For us, it's happened in stages, each stage equally exciting and ones you never forget - so exciting that it's baby book (or blog) material:

1. Does not tear off CI when put on - actually wears it most of day showing he LOVES to hear.
2. When coil falls off, puts coil back on without assistance - showing he LOVES to hear.
3. When whole CI falls off onto floor, actually PICKS it up and brings it to you to put back on - showing he LOVES to hear.
4. ASKS for CI first thing in the morning or right after bath - showing he LOVES to hear.
5. When processor portion falls off ear (coil still connected), comes and says, "My CI! Help please." - showing he hates the feeling of it just dangling ; )
6. Tells you (with words) that the CI has turned off and is not working (although still on ear and coil attached to head) - showing he LOVES to hear.

and not that it ends there. Not even close. In fact, that's just the beginning of true self advocacy - truly letting people know, "Hey, I didn't hear you" and it has to start now. I don't want Aiden to be shy about speaking up for himself. I don't want him to feel apologetic for missing a piece of information because he didn't hear them. If he's having technicalities with his CIs, I want him to speak up and seek out the help he may need to get that technicality fixed. If he's having trouble hearing due to where he's sitting in class, or standing in a room, or whatever the reason may be, I want him to feel comfortable, not embarrassed, to SPEAK up for himself.

Unfortunately, Aiden has come home a few times already this school year with one of his implants OFF. Yes, OFF. We have Aiden's lights turned on for this reason - if they're blinking fast - he's good to go, slow - something's wrong, off - the CIs off. This is all documented in his notebook, with each error code, what the error means, and how to troubleshoot it. I've also met with his teacher before school started and gave a quick demo on them. It's hard to say if it turned off on the bus, was never turned on appropriately after nap (oh the thought!), fell off, and while the teacher or aide was putting it back on it turned off (not totally uncommon when putting it on - that's why it's important to do a quick ling check or check the lights), etc. I've talked with his teacher each time about it, but if it happens again, I will call the principal and ask to come in and explain Aiden's CIs to everyone who he is with throughout the day.

in the meantime ...

I'm teaching Aiden, that HE needs to tell the teacher or the aide or whomever he may be around - "HEY, my CI isn't working."

note: stop the music to the right. sorry it's so small too!

so proud!

Enough Already ... Really

I am about to pull every. last. hair. out of my head. In my last post, I talked about Aiden dissecting his cochlear implants on car rides. Well, it has gone from dissecting them on car rides, to dissecting them at home, to just plain pulling them off ALL THE TIME!

I try VERY hard not to react, and to simply put them back on his head/ears and keep on going ... only to turn around and have them BOTH off his head and usually in his mouth (I so thought we were over the mouthing everything stage). So then, I take them both off for about 10 to 15 minutes, and try again ... only to have them pulled off once again by Mr. Destructo (our new nickname for our "precious" little man) within minutes. When they are on ...

He still responds to the lings (on and off anyway)

He localizes noise better and better (yesterday as the mowers were outside, he pointed to his ear then pointed to the window AND later that day found me as I hid in a dark bathroom calling for him!)

He consistently turns to his name,

He has started to vocalize more in the last week ... like da-da and bye-bye (buh-buh) and a bunch of babble combinations (nabada type stuff)

He has started inflecting his voice like no get out ... from very high squealed screeches to low "da-da" whispers (I think this is hilarious) ... maybe it's the sounds from his screams he's become so accustomed to are scaring him enough to pull off the CIs ... although they truly are music to my ears!

So why, if he seems that he likes to listen and that he is responding, does he constantly pull off his CIs and dissect every.little.part?

Saturday night we all went out to dinner, then Aiden's sister and I went to a late movie to see G-Force 3D (which we both enjoyed). I came home to this on the counter.

Aiden's dad told me the next day that these were the pieces he collected from the car once they got home. What I didn't notice until the next day, as I put the pieces back together, is that a mic cover was still missing. Like I said ... every.little.part. No more CIs in the car ... just too dangerous.

Later the same day, as I was cleaning up the living room, Mr. Destructo was in the kitchen playing in "his" drawers. After a couple minutes of just seeing him playing so nicely with the Tupperware, I went in to check on him again, and low and behold, no CI. At all. So I looked around and found all of it BUT the coil. Thank goodness for back up parts because for the life of me I could not find that coil.

I finally found it later that day here ...

Oh for the love. All I can continue to hope and pray for is that this is a short phase and that it doesn't give me gray hair because the boy's about to wear me out. I feel like I did about a year ago, when Aiden learned to take his hearing aids out. Only difference being he didn't know what he was doing then, but he sure does now. Little stinker. As Nolan's mommy would say, "Don't make me bust out the pilot caps again!"

Oh... and even though we're not set for an audiology appointment for another two months, I have a call into The Listening Center to schedule the next possible appointment. Maybe a mapping adjustment will cure all.

101 Ways to Wear a Cochlear Implant

OK, well maybe not 101, but I feel like we've tried just about that many. In the past two months, we have found that there are things we fight, and things we don't. In the beginning, we fought and fought and fought to keep the processors on Aiden's ears ... needless to say, after mommy was about to have a nervous breakdown constantly chasing baby around to put the processor back on ear and coil back on head ... baby won.


Option #1 - Cochlear Babyworn System: Where it all started ...
What you need:

1) Nucleus Freedom BTE (separate processor and controller)

2) 6" coil (what we use anyway)

3) Babyworn Accessory Pack - This consists of two retention cases to hold the controller which is held onto clothing using either the ONE alligator clip or the ONE safety pin that comes with the pack. Oh yeah, and it comes with a hook and loop fabric panel too ... no clue what it is or how to use it.

4) Snug-fit (or you can use longer ear hooks, I like the snug-fit for this setup) - Adjustable upper and lower earhook to help the processor stay on the ear. The trick I learned from Drew's mommy is to adjust it to the right fit, then LEAVE IT! It's so hard to try and fit it on an active baby each and every time you put the processor on. Exhausting.

5) 10" cable to connect the processor (on the ear) to the controller (clipped/pinned to the clothes)

6) Wig tape - Christian's mommy recommended I use Topps. I'd tried the generic brands in the very beginning and they just don't work as well as the Topps. It does help keep the processor on, but once it's ripped off, it usually doesn't stick again and has to be replaced with new tape.

7) Oh yeah, and a whole lot of patience.

Check out the complete diagram here on the Cochlear website and below on Aiden's ears.

I love this because the processor, which houses the microphones, sits on the ear. This provides better sound localization, gets Aiden used to wearing the device on his ear, and allows for transition to the full behind the ear (BTE) setup, which you'll see in the third option below.

I don't like this setup because of all the cords, but that's little compared to what it does for him.

Aiden constantly pulled the processor off his ear in the beginning and this is how it always ended up ...

,.. which in turn meant mom was constantly chasing baby to reapply coil because the weight of a hanging processor pulls the coil off. Time. and. Time. Again.

So after this rough week, I decided enough was enough and called our audiologist, "This is not working. We need another solution or I'll be the one checking in at Hopkins."

and so onto ...

Option #2 - Full BTE Pinned/Clipped on Shoulder - Where we're at most of the time now

What You Need

1) Full BTE setup all together.

2) Something to hold the BTE on the shoulder. We use the retention cases for now, but as you can see HERE, "Toes" mom uses hairbands and a safety pin, which we'll be going to once all of our retention cases break.

3) A longer coil cord. Since it has to reach from the shoulder to the head, we traded in our 6" coils for 10" ones.

4) Patience. The coil still falls off ... he's a VERY active baby, it's going to happen. Plus he still rips the coils off his head, yanks on them hard enough to tear the BTE from the retention case and then uses it as a teether or as a whip on the cats. Yes ... LOTS of patience.

From behind (you can see that nothing sits on his ears) and from the front you see the BTE pinned to his shoulders and the wires connecting the coil, but nothing on his ears.

Again, lots of wires and you have to be careful not to cover up the processors (i.e. with a jacket) since the microphones need to be exposed to process the best sound quality.

*Note: the retention cases can hold, but are not meant to hold the complete BTE unit and therefore break easily. It is around $32 for a Babyworn Accessory pack which includes ONE alligator clip, ONE safety pin, and that hook and fabric loop panel thingy. So, all in all, these two clips for $32 do not last long.

So I decided to try option #3.

Option #3 - Full BTE on Ear - Where we'll eventually get one day (hopefully)

What you need:

1) Full BTE setup all together

2) 6" coil (what we use anyway)

3) A WHOLE HELLUVA LOT OF WIG TAPE ... I'm excited to try the 3M wig tape which Landry's mommy recommends. You can get it here.

4) and once again ... lots of patience.

(check out that bedhead!)

What I love about this set up is that the only wire is the coil. Aiden actually didn't mess with this as much as the babyworn set up, but this seems so heavy on his ears and I find myself constantly replacing the wig tape, because once the BTE falls off, the tape is done and you don't have the snugfit to help keep it on the ear. This is hard to do when you're out and about, which with three kids, is ALL the time.

PLUS, if it falls off his ear, and I don't see it fall off, there's no retention case holding it to his clothes ... very scary when these things are worth more than my husband's Harley!

So there you have it. Three ways we've tried wearing the Cochlear Freedom. If anyone else has any other suggestions, please, please chime in! Options are always a good thing!