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!
16 comments:
great summary, Tammy!
In the BTE setup, there shouldn't really be any weight on the ear since the processor, etc. is taped to the side of his head (not on hi s hair because it won't stick as well). Is it still bothering him?
When we're home, I leave her "cord-free" but if we're out at the zoo, etc. where it could easily fall off without me noticing, I slip on a tiny little string and pin it to her shirt so that if they come off, they're at least still attached! :) I'll see if I can find the brand (we used EarGear for her HAs)
ah, yes. patience.
yes, tammy, we too followed kelli's example with landry's bte and it is working SOOOO much better. i swear the processors come off much less and she is getting sounds more consistently. wig tape is the key; i just make sure to pull the hair back all the way so it doesn't stick and pull when we take them off. one of the therapists at monrovia's school was amazed last week when she saw her just wearing bte's. i said, "we learned from landry!" (landry goes to the same oral school as monrovia.
soon after you commented on my blog, monrovia's babyworn configuration didn't work. her snug fits kept breaking because her ears are so small. i am just using a random brand of wig tape from a local wig store, although when we get low i will order the stuff landry has.
anyway, if we pick up any more tips i'll let you know!
Kelli - Thanks for the tips! I don't think I'm putting enough wig tape on, because they still fall off (well, him pulling them off doesn't help either). Great idea using the cord for security when you're out and about. I think I know what cord you're talking about, but if you find the brand, I'd love to have it. I really do like this setup!
Susannah - Hope I didn't jynx m's babyworn setup from my comment! ; )LOL! Aiden's ears are tiny too and that snugfit just doesn't want to sit on them right. Thanks to his mom, he has no earlobes to hold the bottom part on that well! UGH.
Hopefully you'll find a set up that works really well for him. The processors worn completely on the shoulder look like the easiest set up for a baby's small ears. I love, love, love those baby blues in that last picture!
I love your post! For some reason, the babyworn setup works really well for us... maybe because we only have to deal with one ear? I still use wig tape most of the time too, in addition to the snugfit and alligator clip, but today I didn't put any on, and it stayed just fine.
I look forward to the pure BTE setup one day when his ears are strong enough... for now, the wig tape irritates his skin waaaaay too much to try taping it to his head.
Allison never used the babyworn(they did not have those when she was first implanted) she had a regular size bodyworn. We were able to make a cloth pouch which she wore under her clothes. Once she moved to the BTE, we tried the snugfits, but they just did not work for her. We finally tried an earmold(like for a hearing aid) and it works great. Just a thought for future reference.
Leah - the processors on the shoulders is definitely the easiest set up for mom and dad! But I have to say, I'm not getting as much exercise since I'm not chasing him as much! lol
Jennifer - I didn't think about the tape irritating his skin, although with the little we've used, it hasn't yet. It's great Lucas doesn't mess with the processor on his ear, that's our biggest battle.
Shelly - I thought about the whole ear mold thing, but was so happy the day we got to stop wearing HAs because of the ear molds. But it's always in the back of my mind! Thanks for the tip!
tammy- i am using enough of the wig tape to go the length of the straight part of the bte, which is probably at least an inch and a half's worth...sometimes i can even leave it on through naptime and it is fine. and monrovia is super active, so...
great post!
here are two more ways for you,
1. we wear the babyworn, but instead of the snug fit like you have tried, we are using the flexiable plastic loop that is given to you in your kit. you need a long ear hook when you use it.
hmm, does that make sense? it stays on the ear better and it is not a bulky.
okay, the other way is use an ear mold from his hearing aids. it helps the processor stay on the ear.
i hope that make sense.
I have no idea how you do this. I have an Aiden (Aidan) too.... and he keeps me on my toes already.... I think I'd have to check myself in as well if I were adding this to my list of responsibilities, but I have to say Aidan is so cute!!! Love the blue BTE!
AidEn is so cute... spelling his name with the "a" is just a habit. ;-)
Hi Tammy, I know this is off subject for this post but...I read on cicircle yahoo group that your son has EVA. We just found out that ben does also. I'd love to hear how/if this changed Aiden's hearing journey. Thanks, Jen
jharris1013@yahoo.com
mbishopp - Hmmmm. I was wondering what the other piece in the babyworn accessory pack was for. Do you have pictures? I'll check out your site. We're always looking for another option!
Michelle - I am laughing so loud! Our Aiden is a HANDFUL too! and a little brother Aiden from our older son's bball team is a HANDFUL too! Must be in the name! It's Irish ... what can we expect!
Jen - I just emailed you. If you don't get it let me know! Good luck!
I have 2 sons ages 2 1/2 and 4 both implanted with freedom. My 4 year old wears his on his ear now but my 2 1/2 year old I use a 10 inch coil and drop the whole BTE in a bag like they use at weddings to put rice in the little mesh bags. I find them at dollar tree in louisiana. There is 6 in a bag for $1.00 and the material is all mesh so the microphones are never covered up. Simply use a safety pin and pin the mesh bag with the BTE in it to the back of the shirt. That way you only have to deal with the coil that keeps falling. Hope this helps. My email jl_305@yahoo.com
We found a head band from joybands.com, then made loads up with the same design for my 16month old daughter and have never had aproblem keeping them on, they hold the processors in place right above her ears and stay on really well.
Have you tried BTE Mic Locks from Cochlear (REF Z60314)? The are soft silicon ear loops that hold the processor on the ear in a much more soft fashion than the SNUGFITS. You can use them with a BTE or body worn set up.
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