Luke’s Story – Magic Ears

Even though it only took two weeks, it seemed like an eternity while we waited for Luke’s first set of earmolds to be delivered so that he could be fitted with hearing aids. We were anxious for him to get his aids and to see if they would help him.  During the two weeks, we noticed that Luke was responding to us even less.  I was worried that his hearing had worsened, so I contacted his audiologist, Megan.  On the day of his appointment (January 24, 2013), she did a quick hearing test to rule out any progression.  Turns out that Luke is turning into a typical toddler.  So, not only can he not hear everything – he’s choosing to also ignore what he can hear.  Selective hearing starts at a young age, apparently.

After the hearing test, Megan did a test fit with his set of earmolds.  They fit like a glove, although he wasn’t crazy about having them put in.  The molds have a clear tube that funnels sound from the hearing aid to the ear.  The tube has to be trimmed to size after the molds are fitted.  Megan trimmed the tubes and attached the hearing aids.  It was the first time we saw Luke with his new accessories, and he looked adorable.  Megan had to do one more test to determine the distance between the end of the earmold and Luke’s eardrum, and then we were sent down the hall to meet with Luke’s teacher of the deaf so Megan could program his hearing aids.

Laurie, Luke’s teacher of the deaf, started explaining her role in Luke’s therapy.  She explained that she would provide speech therapy several times a month and what the structure of the visits would be.  Laurie reiterated that she isn’t here to judge us, but to help us become effective at communicating with Luke and getting him to speak perfectly.  She’s on our side.  Moog has a book, ‘My Baby and Me’, which is a guide they wrote about how to help your hard-of-hearing child learn to talk.  Each visit, Laurie will give us more pages for the book so we are ingesting it in pieces rather than all at once.  The book goes over strategies for communication and language learning and language learning activities. It also has an enormous resource section for questions and issues that arise from having a child with hearing loss.  Laurie gave us the first few pages and explained how we would be using the book.  She also told us about the toddler class at Moog, and suggested that Luke starts attending once he is 18 months old.

About that time, Megan popped in with Luke’s hearing aids and all the support equipment.  She started explaining the care that they require and my head started spinning.  It was so much to take in, and I felt like I was missing pieces of it.  I felt like I needed to be writing everything down.  I laugh about it now, because I’ve discovered the aids are actually fairly easy.  Even though Alex wears hearing aids, it’s all so new to me.  Megan talked about the batteries and how to test them, change them, dispose of them (apparently if one of the kids swallows one we have to go to the ER), and store them.  We went over all the pieces of the hearing aids and how to take them apart and clean everything.  We picked a Critter Clip, which is like what little old ladies wear around their neck for glasses, so that Luke’s hearing aids will clip to his shirt.  If one comes out, it hangs from his shirt instead of falling to the floor.  Pretty smart when you think about how much money they are and how likely it is that Lucy would eat one.  Megan talked about storage and the drying bricks and desiccants.  The desiccant in his carrying case has to be microwaved after it absorbs moisture, and the dehumidifier is where the hearing aids go at night (be sure to remove the batteries to help their life span).  She talked about the wipes and the best way to get ear wax out of the tubes.  She went over otoease and otoferm.  Otoease is a lubricant that allows the molds to easily slide into place, and otoferm is a sealer that allows the molds to properly seal when the child is outgrowing them (while you wait on replacements).  Megan also showed us how to test the aid to ensure it is working properly.  It was an overload, and we hadn’t even learned how to put them in Luke’s ear.

Megan effortlessly showed us how to put the molds in Luke’s ears.  Now, earmolds are crazy looking things.  There’s a piece that goes down in his ear canal and a piece that sits behind a flap of skin on his ear.  You are supposed to corkscrew the earmold in so that everything lays right while tugging on his lobe to get it pushed in far enough.  I was a nervous wreck and Luke could tell.  Plus, he wasn’t crazy about everyone messing with his ears so he wasn’t loving it.  Alex and I had to take turns putting both aids in and out until we felt comfortable enough to manage on our own.  We were told that Luke needs to wear the aids during all awake hours, except for in the car (until we know he won’t mess with them – they are a choking hazard) and any environment where they could get wet.  When he wakes up, we immediately put the aids on.  And we take them off when he goes in his crib to nap.  Basically, if Luke’s awake he needs his aids.

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A boy and his ‘magic ears’!

Megan made it a point to tell us that First Steps pays for Luke’s first set of hearing aids (he’ll wear loaners for a few months before his set is ordered) and all the support equipment.  However, we will be responsible for buying the next set in about 3 years.  Because hearing aids will set you back about $5000, Megan said to start saving now.  So, we are.  Just so we are on the same page – we are saving for a set of aids that Luke will use after the set that we haven’t ordered yet.  And remember, we have two hearing aid users in our house.  The men in my family have expensive ears.

You’re looking at about $10,000. I wish I was joking.

Megan put the batteries in the aids and flipped them on.  Luke immediately perked up and sat a little straighter.  He was kind of looking around the room when I said, ‘Hey Luke’.  He instantly jerked his head toward me and smiled.  My eyes filled with tears.  It was obvious that he heard me.  I talked to him some more and he soaked it up.  I soaked it up.  My little man could finally completely hear me!  It’s something that I’ve taken for granted until recently.  Laurie gave him a toy cow that mooed when you pressed a button.  Luke sat there and pressed the button repeatedly.  I just watched in awe.  I will never forget that moment.

Our plan was to work with Luke during the following weekend to keep the aids in before he started wearing them to school.  He was 14 months old, so we figured that he would instantly pull the hearing aids out as quickly as we put them in.  He hardly touched them.  I think he knows that they help him and he leaves them in.  In fact, now, he points at his ears in the morning before I get his aids in.  He actually likes them.  Don’t get me wrong, he has pulled them out.  But, it’s only been a handful of times over the almost two months that he’s had them.  We don’t punish or scold him.  We simply put them back in and move on.  Luke even wears them in the car now because he doesn’t take them out.

The next day, we had a meeting at Luke’s school.  Megan and Laurie came and instructed Luke’s teachers and the directors about why Luke needs hearing aids and how to care for them.  Since Luke is with them all day, it’s vital for them to know how important the aids are and how critical it is for Luke to wear them.  Everyone seemed to be on the same page and comfortable with everything, so Luke started wearing the aids at school the following Monday.  As Luke ages and changes classes (or as his teachers change), they will each have to learn about his aids and how to care for them.

Alex and I have noticed a major difference in Luke since he started wearing his aids.  We thought that they would help him a bit, but we never dreamed that they would make this much of a difference.  It’s been fascinating to watch him.  There are things that he is hearing that we didn’t realize he hadn’t heard before.  For example, one of the first nights that he had the aids we were sitting down to eat dinner.  I was filling glasses with ice and Luke jumped when the cubes hit the cup.  He hadn’t heard that sound before and it scared him.  He actually started crying from being startled. We (and his teachers at school) have noticed that Luke is repeating more words and sounds.  He is interacting with communication and attempting new words.  He loves books now.  Before his hearing aids, you had to hold him down to read a book.  He didn’t want anything to do with them.  Now, he brings books to us to read and wants to turn the pages and point to things.  Luke always loved music and being sang to.  He’s now singing parts of songs.  When I sing ‘Twinkle, Twinkle’ to him, he’ll say ‘up above’.  It’s amazing!  He’s also more interested in shows on TV (always Team Umizoomi because that’s Anna’s favorite and Luke doesn’t care at this point), and he’s interacting with his surroundings.  We have noticed that he tires out in noisy environments and seems to get a bit overwhelmed.  And, he still has a bit of a hard time picking out my voice in a noisy environment although he is hearing it.

Overall, there has been a night-and-day difference in Luke’s behavior, speech, and hearing since he started wearing the hearing aids.  He’s been amazing about keeping them in and I can now slip them in his ears with one hand.  He also sits quietly when I’m putting the aids in or when his ears are being checked.  I think he knows that they help him.  It has been one of the most amazing experiences watching my son fully explore his world.  The fact that the aids have helped him so much in such a small amount of time is complete affirmation for everything that we are doing.

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2 thoughts on “Luke’s Story – Magic Ears

    • Oh sorry! Didn’t mean to make anyone cry. I’m just hoping that by putting this out there that we can help someone else who has to go through this too. Plus, writing is really therapeutic for me!

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