All of the CI Candidacy appointments are now complete except for the CT scan, scheduled for Friday, May 29th. The CI team is supposed to go ahead and review her on Thursday, May 28th, pending the results of the CT scan. They aren't expecting to find any surprises from the CT scan since Lily has Connexin 26.
The pre-CI audiology appointment was last week. We picked the colors and brand of cochlear implant we want for Lily. We are going with the Nucleus Freedom from Cochlear for Lily. We didn't look very closely at the other brands because the internal part of the implant on the Freedom is smaller than the other brands. Our audiologists explained that the surgeon prefers this brand for babies since it is so small. We definitely want a brand that our surgeon and audiologists are comfortable working with. The audiologists also told us that Cochlear does a good job of making their upgrades backward compatible so that Lily will be able to take advantage of the upgrades without having another surgery. Basically, the newer and better external parts that will come out in the future should be compatible with the internal parts Lily will already have.
In her blog, Aiden's mom wrote a fantastic summary of the 3 different cochlear implant brands and the reasons they chose the Nucleus Freedom from Cochlear. Lily's daddy and I like Cochlear for many of the same reasons that Aiden's mom highlighted. Right now the only decision I'm not sure about is the controller option. Our audiologists highly recommended the bodyworn controller option and the babyworn controller option as a back up. They think we should start with the bodyworn because it beeps if the coil (the external magnet) comes off of Lily's head. This lets us know if Lily is without sound. Although I like that feature, I think I would prefer for her to wear the babyworn controller. The babyworn just clips to her clothes, whereas the bodyworn has to be worn in a harness, in special onesies with pockets, or in pockets that I would have to sew on all of her clothes. I'm thinking I want 2 babyworn controllers, one to wear and one as a back up. We would get one in beige for her to wear now (since she has very little hair) and one is chocolate brown for her to wear when she gets more hair.
Any experienced CI mommies have any thoughts? Which controller option do you use and why do you like it or not like it? Thanks in advance. I don't know what I'd do without the help of those of you who've already been there!
Hi, I found your blog via Jennifer's (Lucas' mommy). We got the babyworn because it easily changes into the BTE. For two months Monrovia wore it clipped onto her clothes. It is hard at teh beginning no matter what, because she didn't like us putiing them on. It was similar to how she fought us at teh beginning of hearing aids. She's now fine when we put them on, but at first was tough.
ReplyDeleteFor US it became easier to just take off the snugfits (they kept breaking- the metal inside of them breaks off because her ears are so tiny that we'd have to push them together really tightly which essentially broke them after only 3 weeks every time!), switch the babyworn into BTE configuration (you can ask your audiologist to show you how to do this if you want to see). The pinning on the clothes became too much of a hassle. We use wig tape on the back of the BTE and stick it on using that. It has worked out GREAT and if we ever feel like we need to switch bak over to clipping it on her clothes, we can because it works both ways. We have a set of two, which is standard for our doctors practice: silver processors with brown coils (which we use now) and beige ones with brown coils.
If you have any other questions, feel free to comment on my blog or email me susannaheloyse(at)yahoo(dot)com
You can also look on landry's blog to see how she does it (it's where we learned it) with teh BTE.
I would not get a bodyworn! We were forced to get one, and it has sat in Drew's closet for the last 20 months. We used it for 2 months, then the babyworn came out and we've been using that ever since. The lights on the BTE can tell you if the coil is on and working, so there is no need for the audible alert. We like that feature, but it's not the end of the world not to have it, and it certainly isn't a large enough reason to get the bodyworn. You'll want the two babyworns to help when parts break. We always have an issue having enough parts when we need spares becuase we only have 1 Babyworn set up.
ReplyDeleteHi! I would also definitely go with the babyworn. The idea is essentially the same - being able to wear part of it on the body instead of the ear - and the babyworn easily becomes a BTE, whereas the bodyworn does not. You'll be stuck with the bodyworn when Lily's ready to where it all on her ear. I think the beeping might get annoying too. The blinking light lets you know just as easily that it's not on her ear. Hope this helps!!!
ReplyDeleteHi! I'm Ava's mom. Ava also has the Freedoms and at 10months of age she is already using the full BTE set-up like Landry and Monrovia using wigtape. This works really, really well for us and is just so much easier with less equipment. We tried the babyworn set-up at first but the snugfit kept falling off and with the extra cables and pinning controllers on either side of her body, it was just.....too much stuff. I think the bodyworn seems too cumbersome and bulky with a harness and again more cables to fiddle with.
ReplyDeleteWith the BTE, if the coils fall off her head, the BTE flashes a blinking light to let you know.
Oops, meant to post our website: cochlearimplant.net
ReplyDeleteWe used and use Med-el's baby configuration with our boys. Med-el has always had the baby configuration which can pin to the shirt collar. By age 3, they can go immediately to wearing it BTE by just switching out the battery pack and adding back the earhook. With Med-el, all the parts are interchangeable so that you don't have one or the other kind, specifically, but parts which go together. My boys were both age appropriate by age 2, and we highly recommend the Med-el engineering!
ReplyDeleteAmy
I wouldn't get a bodyworn either. In fact our audi suggested against it right from the get go. I like having two babyworn set-ups so, like Drew's mom said, if something breaks or needs to be sent out, you can interchange the parts. Plus there are so many different ways you can wear it! I just posted about this on our blog too, because with our crazy boy, we've been having to find what works best day by day. Thanks to Susannah and Landry's mommy, we've discovered it really is possible to wear the whole BTE on Aiden's tiny ears.
ReplyDeleteI'll say a prayer for you all tomorrow that the CT scan goes well! Can you believe you're already at this point!?! Wow! Before you know it, Lily will be hearing with her CIs!