Natalie Hunsaker and Our Homeschool Project

Happy Ending, New Direction

2013-07-13T07:55:00.001-05:00

If you don't want to read this whole post, I'll just summarize here. Soon (hopefully tomorrow), I'll write about the emotional battle we had to fight through this ordeal.

What Was Wrong?
After a billion diagnostic tests (okay, there were only 3 big ones, but it FELT like a billion), we couldn't find anything wrong with Brynn's implants. And since the left and right ears were both having the same trouble, I felt like a common cause must be at the root. I was worried it might even be her nerve or something that we simply couldn't fix. Suddenly, I realized what it may be:
the implant has a setting where the recipient can hear a mechanized "beep" when the battery is low or the program has changed. We usually have that alarm off, but I discovered that somehow the setting was turned on. Combined with the fact that our batteries are 3+ years old (a year longer than the average lifespan), I realized that her batteries simply weren't lasting a whole day. She was hearing a "beep" as they got low and to say that Brynn loathes "the beeps" is an understatement. So, the good new is: no surgery! The bad news is: this is still a guess of what may be the trouble so this might not be over.

Wearing Them Again
Getting those implants back on Brynn's head again was a massive challenge--one that we're still not entirely through. After her long medical history, the poor thing has the anxiety level of a traumatized war veteran. And during the 5.5 weeks she was totally "off the air," her speech has gone down hill a great deal. So we're not out of the woods yet but as of yesterday, she was wearing her left ear all day on slightly less than full volume. She was ecstatic. She kept saying over and over throughout the day, "I can hear that!" She ran to the piano and played for a while, brought me several books to read, and wanted to call Daddy on the phone. She refused to let me take it off long enough to comb her hair and was hesitant to let us take it off at night. Oh! I am so glad she is willing to wear it again!

Our New Direction
Even if we do get both implants back on at full volume, though, we have still decided to turn a big corner anyway--it's time to go to the LDS Deaf Branch (a small church) in our area. Let me just say that there is nothing like trying for over a month to communicate with a deaf kid who doesn't know the Deaf's native language. I mean, she has a lot of vocabulary words, but as a language...not even close. If this experience has taught me nothing, it is this: NOW is the time to make good on that commitment we made so long ago--that we would give her the ability to choose the Deaf or hearing world as an adult by doing our best to give her both languages as a child.

So that's the short version. Here's some of the details for record's sake:

The tests we had to do were the following:

An "integrity test" that Cochlear does prior to surgery to see if they can find anything wrong. This involved a lot of wires taped to her head and big plugs stuck in her ears...and three adults to hold her down long enough to get the results. Poor girl. She was terrified.
A CT scan to make sure the implant hadn't shifted during growth or something else totally out of the ordinary. This involved having her arms, legs, and head tightly belted down to a table and pushed into a huge circular camera, which for a four-year-old is pretty scary. If she had even so much as flinched, the photos wouldn't have worked, so everybody thought she'd need to be sedated. But, to our amazed crew, she chose to be stunningly brave and we got everything we needed on the first try without any sedation. Way to go Brynn!
A sedated eSRT, which basically measured brain responses to each individual electrode. This told us if any individual electrode had become too loud (which often happens over time for any implant recipient and is why regular visits to the audiologist for updated programming is required). We had to drive to Logan and stay in a hotel to do this test so it was quite an adventure. Thank you, Grandma, for helping us through it so Matt could go on his business trip!
We also tried turning the volume way down on the right ear but she hated "the quiet."
And we tried switching the power usage to manual instead of auto. Sometimes the auto will give too little power to the implant and the sound will cut out periodically as a result. However, this manual power uses more battery so it may have compounded our problem.

For the several months we spent working around hospital schedules, frequently traveling to Logan, and trying to figure all this out, she had a lot of time being deaf. Her right implant has been off since April 24th. Her left one was off since June 4th. That made for 5.5 weeks where she wasn't wearing either implant. Her speech was noticeably worse after about 4 weeks. All the consonants requiring the front of your tongue (T and D especially, but also Z, CH, SH, TH, etc) were all moving to the back of her tongue (T became K and D became G, etc). Because she didn't use her signs much (she talked, I signed), and her speech was so deteriorated, I was having a really hard time understanding her. Even when she wore her left ear for a full day, she corrected me when I said, "Let's read Dumbo." She said, "It's not Dumbo--it's Gumbo!" I think I'll just let her figure out the correct word on her own...

As for the beeps, these unfortunate sounds happen not only when the battery is low or the program changes, but also when we update the program for her internal electrodes. In fact, this routine programming is one of the reasons why she hates the beeps so much. Because each time we update her program, it's like moving the furniture on a blind kid--she has to learn to hear all over again with that ear. Ideally, this occurs every 6 months in order to keep her hearing at her personal best, but I have no idea when she'll allow us to update that program again. She thoroughly hates our audiologist now because the integrity test (her most traumatic one) was in his office; and he was present when she got the sedation shot for the eSRT test, too. Lots of negative association with him may very well require getting a new audiologist in Denver or something equally inconvenient. Time will tell. At this point, I prefer less-than-perfect hearing to seeing an audiologist any time in the near future. I have no idea how old she will need to be to understand that the beeps are not going to kill her.

Throughout this experience, I've been inexpressibly grateful she can read. Some days, writing her a note was the only way I could get her to understand what I was saying. It was actually really therapeutic for her, too, and she would often ask me, "Will you write to me, again, Mom?" I should do that more in the future.

I'll talk more about how we got the left ear back on her head and the decision to go to the Deaf Branch in the emotional journey post. As for now, I think that's most of the details I want to preserve. To everyone who has followed our story or worried about my little Brynn, thanks for your prayers.

Surgery Cancelled...or Postponed?

2013-06-10T22:13:00.002-05:00

Well, Brynn's surgery was postponed for the second time due to a random fever and rash. But I am still feeling like it's a blessing in disguise. I still keep hoping that we can somehow escape surgery. Especially when she had an episode with her left ear that was just like the problem she was having with the right ear.

Come on. What are the odds that both ears would fail in the same few months time span?

I've done more research about that very question.
It turns out that athough Cochlear Corp has less than 1% failure rate for all of their internal devices, Brynn's particular device has a 4.2% failure rate. Basically, water leaks in and the electronic parts shut down as a result. The explanations and details about the failures are kept at cochlearcares.com if you care to know more. But the bottom line is this: even though her particular implant line has had more than the usual failure rate, 90% of the failures happen prior to 14 months post implantation. Also, most of them happened in devices that were implanted during the first quarter of 2011 (a year after Brynn's implantation). So what are the odds that three years after implantation that both her implants have failed in the same couple of months? To further decrease the odds, they say the symptoms of implant failures is first, occasional cutting out of sound; and second, device shut down. Brynn's implants still work--they are just painful somehow for her.

So what does this mean? What are the alternative explanations to her troubles? I've been told that there is only one explanation: over time, the fluids in the inner ear can change with diet, hormones, aging, or any myriad of things. If the fluid changes, so does the way the electrodes in the ear react with the nerve. So something that was fine a month ago can now sound really loud (adults don't let it get too loud and take themselves to the audiologist before it gets painful, but with kids it's a whole different story). But even though that is plausible, it doesn't entirely match her symptoms. Because when she reacts negatively, it's usually out of the clear blue sky, with no particularly loud or different sounds in the background. With her left ear, she always complained first thing in the morning so I can definitely see that it was uncomfortable to go from complete silence to a suddenly loud sound. But the right ear was just so random! And then the last time she ever wore her left implant, that one was extremely random too. She just gets this white-as-a-ghost look on her face, with eyes as wide as saucers and then rips her ear off and starts to cry.

Trying to get her to tell us what's wrong is like trying to cut onions with a toothbrush: you don't really get anywhere but in the end you have a strong urge to cry!

Sometimes she'll just stare at us blankly. Other times she'll simply say, "Don't ask me questions." Yet it breaks my heart because she wants to hear so badly. It's just that her 4-yr-old understanding can't help her past her anxiety.

She's been totally deaf now for three days. She is not at all happy about this. She is extremely emotional and angry (she pinches Paul's arm, takes Heidi's toys, whines endlessly, and fights everything from getting dressed to eating, etc). She is cranky and frustrated and it's rubbing off on the rest of us.

But yesterday, we were sitting at the piano and she said, "Mom? I want to hear the piano." (it's amazing how well she talks even with zero hearing). I told her we were going to fix her ears so that yes, she could hear the piano sometime soon--but does it count as a lie if I believe that's true without knowing how on earth it's going to happen?

None of the puzzle pieces seem to fit any of the experts' guesses. So honestly, your guess is as good as mine.

We've tried to just turn down the volume on the implant as a whole but she hates anything that sounds different than what she's used to and has a complete meltdown. As soon as we turn it back to its original volume, she does fine until the next white-as-a-ghost episode. When we change the program, she'll meltdown with double the drama (changing an implant program is like moving the furniture around on a blind kid--they have to re-learn how to hear).

So we're going to try sedating her and doing ESRT (measuring brainwave responses to determine the loudest tolerable sound the implant should send for each electrode); and then we'll have to get an all-new program to determine the quiet sounds for each ear (if she'll cooperate, which is highly unlikely). But then what do I do? FORCE her to wear something I know she won't want to wear? If I FORCE her, how do I know I'm not ruining her trust by forcing something painful?

I can hear all my Deaf friends now: "Told you so. Implants don't work. You should have just done sign language." But I'm telling you, Brynn loves her implants. She LOVES hearing. And she has excellent speech--in fact, no one knows she's deaf unless we point it out. She still prefers talking to us instead of signing, even without implants on. She asks if I will give her her ears every day since being deaf (then breaks down in anxiety if I actually go get them for her). So implants DO work (in the right cases); but I'll agree they definitely don't come without a few challenges. One thing I wish to thank my Deaf friends for, though, is giving me the proper motivation to teach Brynn sign language in addition to speech. Let me tell you, my life would be SO miserable right now without her current sign vocabulary!

Well, I really should stop rambling. I guess I am just going on and on because I have no idea what I should do. Wait? Pray? ESRT? Maybe surgery as a last resort? One thing is for sure: take a day at a time...and keep my chin up with the ultimate expectation that it will all work out according to the best. In the meantime: sign, sign, sign.

Darla Isackson

2013-03-21T15:29:00.000-05:00

I found this to be a very informative series, originally published through Meridan Magazine, and republished here by permission from Darla Isackson.

Article 1: Education as the Early Prophets Saw It
Article 2: The Rise and Demise of Church Academies
Article 3, P1: Role of Religion in the Education According to the Founding Fathers and the Constitution, Part 1
Article 3, P2: Role of Religion in the Education According to the Founding Fathers and the Constitution, Part 2
Article 4: Public Schools vs. the Fundamental Purposes of Education
Article 5: Can Parents Counterbalance the Negative Influences in Public Schools? 
Article 6: Back to School: Readers Open Talk about Public Education and Tough Choices
Article 7: Charter Schools
Article 8: Creative Combining of Options: Could Dual Enrollment Be Your Solution?
Article 9: Education Reform from the Bottom Up
Article 10: Saints Seek Solutions to the Education Dilemma
Article 11: Mom Schools and Co-ops 
Article 12: To Homeschool or Not to Homeschool? 
Article 13: Education Series, Part 13 ABCs of Homeschooling
Article 14: Joyce Kinmont, Homeschooling Pioneer