Chris Schuette – Indiebear Music
  • Hearing Loss
  • March20th

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    Every so often, I like to post quick little movies of Isla doing, well, Isla stuff.  I think of them as moving snapshots…with sound.

    The other day, Isla’s bedhead was of a particularly vertical nature, so I took out the camera to record it for later embarrassment.

    It just so happens that she was watching the “Signing Time” video where they teach signs for getting dressed, brushing teeth, etc. I was lucky enough to catch the oh-so-timely lesson for basic hair care.

    Obviously, this sort of thing runs in the family:

  • February22nd

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    If you’re reading this (and I practically guarantee you are,) you may have noticed the big honking link on my right sidebar. You know, the one with Isla sporting the adorably asymmetrical pig-tails. Well, Isla is raising money for her school, Northern Voices, with a little help from her mom & dad.

    Northern Voices is an incredible school that teaches deaf and hard-of-hearing how to speak and listen. All of the kids wear listening devices such as cochlear implants just like Isla. I’m not exaggerating when I say that the work they do there is amazing. Isla has been making incredible progress and is making many new sounds and even a few words. She loves her new school and looks forward to going every morning. The staff, honestly, rocks.

    Our family is walking a 5K in May to support Isla’s school. If you would like to make a contribution, you can do so by clicking on Isla’s fundraising page. Donations are accepted online starting as low as one dollar.

    Thank you in advance for any support you can give, and to learn more about the great work they do at Northern Voices, check out their website at northernvoices.org.

    Admit it; you’re also a bit curious to see if I can walk a 5K without stopping for several naps.

  • December7th

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    Today was a very big day for our girl.  One month ago, Isla had her second cochlear implant (CI) surgery, and today was the day they activated it.  As we hoped, everything worked perfectly and Isla can now hear out of both ears.

    Now the real work begins. Speech and language development will be the first priority; followed, of course, by a thorough study of Miles Davis’ Kind of Blue

    Those A-flat Mixolydian modes aren’t going to appreciate themselves!

    To say we’re relieved and overjoyed would be an understatement.  Even though the surgery went well, there was still a bit of apprehension.  Luckily, Isla is getting used to the experience like a pro.  I can’t imagine having a whole new world open up for me like that.

    Of course, now I actually have to be the kind of father that is worth listening to.  I’d better work on some new material or this kid is going to get BORED!

    Patty & I want to thank everyone for the incredible amount of support we’ve received.  Like any parents, we just want to provide the best life possible for our girl.

    And so far, she seems to be appreciative.

  • December1st

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    With the activation of Isla’s second cochlear implant coming up next week, several people have asked me about what we would do if either of Isla’s cochlear implants became lost or stolen. Well, knowing myself pretty well, I’m reasonably certain that a well-choreographed “freak out” would be in order.  It’s a good question, and one that warrants a serious answer (in a hopefully humorous way, of course.)

    Well, obviously if it’s stolen, you file a police report immediately. That’s the recommendation of the manufacturer, Med-El. Coincidentally, it’s also the recommendation of Jor-El (pictured)

    His other insights are less helpful

    The warranty for Isla’s implant covers the internal electronics (the part under her skin) against failure for ten (10) years. The external components are covered for three (3) years from the date of activation against “mechanical or electrical defect,” but not for “theft, loss or accidental damage.”

    HOWEVER (and it is a BIG “however”) our warranty provides a “One Time Loss and Damage” option. Which basically means that if anything happens to the external components within three years from the date of surgery, the manufacturer will replace the external components one time only.

    (DISCLAIMER: Bear in mind that this information is taken directly from the warranty for Isla’s implant and may not apply to other implants or implants from other manufacturers.  Be sure to carefully review your own warranty for coverage and specific limitations.)

    Another option is look into obtaining a rider or endorsement for your homeowners insurance policy. Some companies will charge an additional premium to apply broader coverage for things like cochlear implants and hearing aids. Talk to your agent for details and ask a lot of questions!

    A third option would be seek coverage from other companies that specialize in insuring medical equipment. A Google search will start you in the right direction, but this will require a lot more research on your part since coverage, costs, and the reliability of the insurer can vary widely.  Talk to other people who have cochlear implants and find out what they recommend.

    Fortunately, Isla’s implant is working fine and we are constantly watching to make sure the exterior components haven’t mysteriously disappeared or been thrown in the lake in a fit of frosting-related toddler rage.  We also use “wig tape” like the kind I use to keep my toupee in place to prevent the control unit/battery pack from sliding off her ear as she leans forward to check out her hilariously oversized shoes.

     Adorable moments like this, frankly, scare the crap out of us

    I’m checking with my homeowners insurer to see if they offer additional coverage. I’ll let you know what I find out. Likewise, if any of you have any experience with this, please feel free to leave a comment. I’d love to hear it.

  • November29th

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    Patty & I brought Isla to the Minnesota Children’s Museum on Sunday for some much-needed “burn off all your excess energy so you can for-the-love-of-God take a nap” time.  We have annual passes to the museum, so we tend to go there a lot.

    As you can imagine, Isla loves any place where she cannot possibly run out of things to do.  This time, she decided to hang out in the “Our World” exhibit, which includes a toddler-sized “Main Street,” complete with a mini doctor’s office.  Considering how much time Isla has spent in the hospital, it was a bit of a relief to see her enjoying the surroundings.  She couldn’t wait to try on the lab coat and play with the stethoscope. She even attempted to break my leg in the hopes that she could take a real x-ray!  (I’m still a little disturbed by that.)

    I know she’s just playing, but it’s amazing to watch her figure things out while also having fun.  Patty & I aren’t pushy parents, but we just want her to know that she can do anything she wants to in her life. She’s becoming a more confident little girl every day, and something tells me that she won’t let a little thing like hearing loss slow her down.

    I just hope I can keep up.

  • November8th

    4 Comments

    Credit: Stereostack.com

    (To read about Isla’s first cochlear implant surgery, click here.)

    Thank you to everyone for the amazing support for our little girl, Isla.  Isla had her second cochlear implant surgery yesterday at the University of Minnesota Amplatz Children’s Hospital.  This time it was for her left ear.  In another month, they will activate it, and if everything goes according to plan, she will finally be able to hear in stereo.  That’s right, she’ll soon be able to appreciate my Living Strings albums as much as all kids do.

    It was a tough day for our girl, and the post-op experience was a little different this time.  She had a more adverse reaction to the anesthesia.  I figured this out when she projectile-vomited on me as I was holding her close.  Yeah, it was a mess, but you know what? I didn’t even flinch.  That’s right, I held on to her until the nurse and Patty could take her. She’s MY girl and I hang on to her no matter what.  Plus, I’m a U of M alum and a musician, so I’m somewhat familiar with being vomited on.

    Seeing your child in real pain is one of the worst experiences a parent can have.  When I first saw her after surgery, it wasn’t just her pain that hit me, it was the look of sad confusion on her face. She clearly has no idea why any of this is happening, and although we can hold her close and let her know we love her, there is nothing we can do to explain it to her. All she knows is that it hurts.  This is what I mean when I say that this wasn’t an easy decision, because I would do anything to not see that expression on Isla’s face ever again.

    The good news is that she is going to be fine. Soon enough, she’ll be running around, laughing, climbing, and just being a regular happy little girl again.  I can’t wait.

    Oh, and despite the long exhausting day, Patty was amazing. She was always right there to comfort Isla and give her everything she needed.  Some would say that’s all part of being a mom, but to me, it’s the most beautiful thing in the world.

    I’m the luckiest man I know.

  • November4th

    2 Comments

    Isla has another big day coming up. As I mentioned before, her cochlear implant for her right ear has been working out very well.  As a result, Patty and I have decided that she will have the second implant for her left ear. The surgery is scheduled for this coming Monday.

    Even though we’ve been down this road before, we’re still nervous about any kind of hospital visit. This isn’t a decision we take lightly, but Isla loves being able to hear the world around her, (or at least the world to the right of her.) With the hard work of some amazing medical professionals, we’re confident that she will be able to experience so much more, such as that really boss surround sound system in the rumpus room.

    Patty has been absolutely amazing through all of this. While I’ve been posting “Simpsons” clips and writing about allegedly drunken Presidential candidates, Patty did something truly special for our little girl.  There are lots of dolls out there for all types of kids; dolls with glasses, dolls with wheelchairs, but Patty was unable to find a doll with cochlear implants. So she made one.

    Using only puffy paint, a doll Isla picked out at Target, and her innate MacGuyver-esque talents, Patty painstakingly applied the paint to form two little cochlear implants on the doll.  You can read all about it at Patty’s site, but she was kind enough to let me post some pictures here. What a great mom!

  • October31st

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    More

    Posted in: Baby, geek, Hearing Loss, Video

    I’ll be honest, I can’t remember if I ever posted this short video of Isla doing the ASL sign for “more.” Well, if I did, here is is again.

    I’m actually posting this to test out whether I can do a video podcast.  In case you haven’t noticed (and judging by the stats, you haven’t,) I have a neat little Podcast over at iTunes.  Whenever I post an original piece of music here on my blog, it automatically gets added as an audio podcast on iTunes.  You can subscribe by clicking on the “iTunes Podcast” button on the right sidebar. Oh, and it’s free!

    Well, I am attempting to see if I can add a video podcast as well.  If this sounds very geeky and if I lost you 5 minutes ago, you’re finally starting to understand what a conversation with me is actually like.  Either way, I hope it works, and I hope you enjoy the short (23 second) video.

  • October18th

    3 Comments

    Isla spent most of this summer listening…to everything. Her cochlear implant was activated in July, and it works like a dream. The implant is for her right ear, since that was the ear with the most hearing loss. As a result of being able to hear better, she is now vocalizing more and learning how to make the various sounds that will eventually develop into words. She is also attending speech therapy, as this is essential for learning how to hear, as well as listen. (Yes, there is a distinction between the two.)

    Most importantly, Isla is happy. She loves learning new things and is excited when she can show off her newfound skills, such as book reading, book tossing, and book attempted-eating.

    She has also moved on from simply laughing at her dad’s antics, to actually trying to crack me up as well. This is her scary face:

    Kid’s got some serious comedy skills. There’s no way this will ever lead to something bad, right?

    Right??

  • June17th

    4 Comments

    Our little girl came through her surgery with flying colors, which is a bit strange since flying colors are strictly prohibited in that part of the University of Minnesota Amplatz Children’s Hospital.  Everything went the way it was supposed to and the cochlear implant will be activated in a few weeks. Isla is sleeping and will be receiving much deserved cuddling/frosting for the foreseeable future.

    Patty & I also want to thank everyone for their incredible support.  Seriously, we’re lucky to know so many wonderful and kind people.  We’re also keenly aware that this surgery is only the beginning of a long and challenging journey. After the recovery and the activation of the implant, Isla will need to learn how to hear. She’s a tough little girl, though, and she has two parents that will do just about anything for her.  I plan to start by teaching her the difference between Mozart & Led Zeppelin and then working our way up from there.

    Here are a few Wifey-Approved photos from the big day.

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