Small Victories

The phrase "My way or the highway" was coined for my son Seth. He is the most stubborn child I know. For a long time he refused to talk completely even though all of his hearing tests have come back perfect since his cochlear implant surgery two years ago. Then he finally started talking at home but would never, ever talk when anyone wanted him to. Not even to say please or to get candy. The fastest way to get him to be quiet was to ask him to say anything at all.

Seth is the kid who will talk up a storm until the camera is on him then clam up. He is the kid who talks right up to the door of his classroom then gives everyone the side eye when they say hello, only to start talking again when he's dismissed for the day. He knows immediately if you're angling for him to talk and he shuts right down, only to disappear into the next room and chat up a storm with a stuffed animal or sibling.

He's difficult, is what I'm saying, and he is a control freak of the highest degree when it comes to talking on demand. In other words, he doesn't do it.

Only recently has he begun deigning to say words in response to questions or even imitation, so this video, while simplistic, pretty much makes my life right now. I'm finally starting to see light at the end of the tunnel with this beautiful boy.

On Going with your Gut

Having a kid with cochlear implants can be challenging. I'm kind of understating that, but I never want to make it sound too intense, because I know that there are so many people out there taking care of kids who make Seth's issues look like a walk in the park. Nevertheless, though, having a son who is reliant on electronic equipment to hear anything at all...and said son being 26 months old and a very rough, very tumble, very boyish boy...well, it can be challenging. Seth breaks things. Seth causes things to be broken. Seth is stubborn and refuses to hold conversations. He talks when he wants, and we'd better listen because you never, ever know when the next opportunity will come around. Since he is so selective with his speech, on my more neurotic days I also wonder what he is hearing, whether he is missing out, whether I'm doing the right thing by mainstreaming him...the what if's are endless.

Especially for someone who overanalyzes like it's her job.

So much of the past two years and two months has been full of hard decisions and the day to day slog of raising a child with hearing loss in a hearing world. I have been second guessed and my choices have been strongly questioned. I have been told I was making the wrong choices, that I was too aggressive or that I was not aggressive enough, that I talked too much, and that I talked too little, that I was expecting too much of him, or that I was not expecting enough of him.

It's enough to make your head spin.

All I have been able to do, in the end, is do what feels right. I can't always explain it, and sometimes the decisions don't seem to make sense, but I go with my gut anyway. For me, that was pushing for a second hearing screening when everyone else was convinced he could hear just fine. It was pushing for a bigger surgery faster, and when our surgeons weren't into it, finding new ones. It was making the choice to learn ASL in case we needed a plan B, but never to sign a word to Seth. It was following my gut this summer and pulling Seth out of therapy for a month of R and R when everyone else was saying we had to hit it harder. It was signing him up for mainstream preschool when he was so clingy I couldn't even leave him at church. It was making the choice to always treat him like he could hear me, even before he could.

Any one of those choices could have ended disastrously. If they had, I'd be kicking myself for sure. But they didn't, and because of that I've learned that I really do know Seth better than anyone else, and I know what he needs, even when it doesn't seem to make sense, even when I'm the only one on my side of the fence. It's scary when we're going through a rough patch...I start to question all the decisions I've made.

But oh, the good times when Seth falls into a groove? Oh, man, is it heaven.

We're in heaven right now.

Kind of, at least. Seth is now happily wearing his ears all day long. Even in the car, which is a HUGE step. In fact, when we're in the car and one of his head pieces comes off, the kids loses it. Completely. Screaming, wailing, "Momeeeee!" yelling fit, until I manage to stop and fix his ear. He wants to hear that bad. So bad that he can't stand to wait until a red light for his head piece to get put back on. It's simultaneously incredibly fulfilling and annoying.

At school the other day, he walked in, put his backpack away, kissed me, then ran off to play without ever looking back. When I picked him up he was grinning from ear to ear. He loves school. He has not taken off his processors one single time at school, ever. He loves it, and his teacher gave him the biggest compliment in the entire world the other day...we were talking about Seth, and I asked how he was hearing and talking. "There is no difference between him and any of the other kids in the class...except that he actually listens better than most of them." Seth blends right in with a class of typical two year olds. This is a mainstream preschool, that has no other kids with any special needs. I almost started crying right there.

Seeing Seth show others that a child with cochlear implants can function very similarly to a hearing child is so amazing to watch. The other day I was sitting in carline, and I saw the teachers all exclaiming over something. As one of them brought him to the car, she asked me if I heard what they had been saying. When I told her no, she explained to me that Seth had been lined up with the entire school...about fifty kids or so. It was super loud in the hallway and he was about halfway back in the crowd, yet when the teacher at the door saw me pull up and called his name, he immediately grabbed his bag and headed to the door. "We knew he could hear with his implants, but we never knew he could hear like that!" She exclaimed. "It's amazing!"

And it is. Sometimes I forget how amazing it is, because it's our every day life. But seeing him surprise other people like that opens my eyes to just how amazing a ride we're on, and I can't wait to see what else he can do.

I'll even put up with the ridiculous screaming in the car because I love that he wants to hear badly enough to scream about it. And we'll keep on going with our guy over here.

And just so you guys can see what I mean, here is a video of the boy in the car. (Don't worry...we were NOT driving at the time!)

Busting a Move

Just a quick note tonight...we've had a long day!

Seth was pretty excited to get his ears back this morning. Right after the fed ex guy delivered them we put them on and cranked up the jams. I had to video tape him...it was the most adorable thing ever. He has the strangest style of dance I've seen in a while, but it's pretty darn cute if you ask me.

This is another, much shorter clip. His moves were getting pretty crazy by this point. It's pretty clear that this little boy loves to hear! At one point all of his dancing knocked one of his headpieces off and he immediately ran up to me and made me fix it, then ran back to the middle of the floor to dance. 

I love watching this boy dance. He makes me smile so much. 

The best customer service ever. No, really.

This morning I went in to get Seth out of his crib (which he will be staying in until he's fifteen, for the record). He patted his ears excitedly and I said "We're going to put your CI's on! Hang on!" Then he yelled at me in gibberish like he does when I don't immediately scream "How high?" when he says "Jump!"

You might understand the rest of this post more if you check something I posted a while back explaining the pieces to Seth's equipment. Click here to see it. 

I got his processors on him and noticed right away something was off. Usually, when Seth's CI's are connected, they blink green. Then when they are disconnected, they blink red. Today, they were blinking red appropriately, but not blinking green at all. I kept trying to trick Seth and get far enough away to test his hearing with the ling sounds without his vision being involved, but that boy is on me like white on rice. He's a stage 5 clinger, for real. 

After I fiddled with things and switched out the headpieces and batteries (which didn't help), I pulled out his back up processors and tried those. Seth started nodding immediately, which, to me, indicated that he was hearing better. 

So that basically fixed the problem, which proved there was a problem, because his primary and back up processors are mapped identically, and should have behaved identically. I thought I'd try out the problematic processors again before I called customer service, and so I went to pull the headpiece (the magnet that attaches to Seth's head) out of one back up processor and plug it back into a primary processor.

Which is when the part of the headpiece "plug" if you will, snapped off inside the processor. I was actually kind of shocked...while there are some little things that happen pretty regularly with a toddler and small, expensive electronic equipment, this particular issue had never happened before. I couldn't get the broken piece out no matter what I did...it had broken off completely flush to the processor. Of course, that made one of Seth's "back up" (read: working) processors useless, too. 

So out of 4 processors, two primary and two back up, Seth was suddenly down to one that worked. That's not the best odds. I called Advanced Bionics Customer Service and they answered within about two rings...a real person, which is one of my favorite things about calling them. 

I told the representative that my son was having some issues with his equipment, and she asked his name. I gave it to her, and she immediately started laughing. 

"Oh, Seth! What did he do now?"

I can't decide whether I am embarrassed or impressed that the customer service rep that happened to pick up the phone today knew my son as soon as I said his name and also immediately knew he was trouble with a capital T. (This actually happened the last time we called, too.) Right now I'm going to go with impressed. 

Within two minutes she had set up overnight delivery for the processor and headpiece to replace the ones that had broken off, chit chatting about Seth the whole time, and had me talking to technical support to try to get the original two working again. When that (equally lovely) lady asked me if I thought Seth's primary processors were getting sound to him, I hemmed and hawed a little. 

"Well, he's two, so he's not the best reporter." I said. "But when I put the back ups on him he started nodding a lot and pointing to his ears, so..." I trailed off, not sure what that proved.

"You know what? We're going to go with that. We have to go off his cues, and I'd rather send you out new processors that we know work than worry about him not hearing."

And that's how, after one short, pleasant conversation, three new processors and a head piece were being overnighted to Seth, complete with programming emailed from his Audiologist so that we don't have to go into her office 45 minutes away to get his new processors set up. 

They didn't make me send the broken things in first, they didn't question me at all, they're sending his equipment overnight from California...they were nothing but nice and wonderful. And this isn't even close to the first time I've had to call about an issue, and they fix it like this every time. Every single time.

Sometimes I thank my lucky stars for going with Advanced Bionics, I really do. I mean, everyone I know is basically happy with their implant company choice, which is great. But I...I am in love with our implant company. I would marry it, I would. For real. And that's why I'm writing this gushy love letter on the internet, because most people, myself included, remember to complain but forget to praise. 

And a company that is run in a way that makes me feel happy every time I hang up the phone after talking to them, whose workers I have had the privilege of getting to know and whose implants I have watched being built...well, that's a company I'm proud to be a part of. 

Over a year and a half ago, when I was still tossing and turning over our implant choice, I received an email from someone I'd never met. She had read my blog, and she worked for Advanced Bionics and had heard that I was leaning in that direction for Seth. Here is a small part of what she said:

"I've also started praying for his device that will be being built in the

next few weeks. The technology is amazing, and I pray that God will be

able to use that to open new doors for Seth and your family."

For me, that sealed the deal. I can't quite explain it, but  it just felt right. Advanced Bionics was the right choice for our family, for Seth, and that email finally let me relax and just feel peace about our choice. 

And every step of the way, in words, actions, and deeds, the people there have kept me feeling that peace. 

And that's some amazing customer service. 

Seth CI Update

I thought in honor of Seth's big one year hearing anniversary I would post a little bit about the progress he's made.

This year Seth has made amazing progress and had frustrating setbacks. We have gone one step forward and two steps back more times than I can count. I decided a while ago that I wouldn't sugar coat this experience...that while Seth has been giving an amazing gift, I would be doing everyone who is interested in or considering implants a disservice by only posting the glowing reviews. And yet...mostly, it is a glowing review. I mean, my son can hear.

Within three months of activation, Seth had "caught up" to his hearing peers and showed now language delay. Of course, that was at age one, when hearing babies aren't saying much and definitely aren't in speech therapy every week, so Seth was kind of at an advantage. Everyone was astounded at how well he heard and verbalized. As we round the corner to two, he has fallen behind in some areas, namely expressive language, but is noticeably ahead in some other areas like receptive language. The kid understands complex directions and will carry them out to a tee. He's capable of saying many words and phrases, meaning I or his speech therapist have heard him say them clearly, but usually chooses to observe and speak only when it's his own idea. He is incredibly strong willed. Within the last month, though, I have seen a big improvement in willingness to imitate and hold a conversation. The main reason I don't really stress about his expressive language is that his booth tests are showing us that he hears very well, as is his behavior. The talking will come.

The hardest thing to get used to was keeping his CI's on every single second. When he was a baby, it was easy, and then, around his birthday, it began to get much harder. He pulled them off. He threw them. He carefully dismantled them into their smallest pieces and threw them every which way. We've lost batteries and ear hooks out the window of the van more times than I can count. For a while he was ruining cables on a weekly basis. Our friends at Advanced Bionics joked about having Seth act as a quality tester because he was so adept at breaking things.

But then, this winter, or maybe even more recently, I can't really remember; he realized that keeping his CI's on meant he could hear. We turned a corner. Now I can count on him to keep his ears on for long periods of time. He'll bring them to me if they come off. It's getting better. He even tries to put the magnets back on himself if they fall off. He wakes up in the morning and pats his head excitedly, waiting for his ears.

Here is a list of Seth's words and phrases at 22 months, 12 months post cochlear implant activation.

1. Show
2. Cross
3. At Table
4. Cup
5. Ball
6. Mama
7. Baby
8. Help
9. Up
10. Down
11. Milk
12. More 
13. I put
14. Blue
15. Boy
16. Blocks
17. Bear
18. Cut
19. I Cut
20. Round and Round
21. Mine
22. Hug
23. Thank You
24. Okay
25. Uh Huh
26. Yeah
27. Bag
28. I do
29. Toot Toot
30. Out 
31. In
32. Went
33. Under
34. Hi
35. Bye Bye
36. Horse
37. Cow
38. Quack
39. Moo
40. Arf Arf
41. Apple

There could be a few more than that, but that's the list that was in my phone and is generally where he's at. One and two word phrases. He also does a lot of babbling total nonsense that clearly is supposed to mean something, I just haven't figured out what it is yet. 

I am, without reservation, thrilled that we implanted Seth as early as we did and especially that we implanted him bilaterally. He localizes sound effortlessly and I can tell a major difference when he only has one ear on versus two. His therapist also says she sees a big difference in localization between unilateral kids and bilateral kids. It's a very, very big advantage. He seems to hear very naturally. He loves music and dancing, and he can really bust a move. 

At the same time, he's a kid, and a stubborn one at that. I think a lot of his refusal to vocalize when asked is more about being a toddler and trying to gain some control than about his CI's, but I am really, really hoping for a language explosion soon while still reminding myself that he's a kid and he's going to do things in his own time. It can get so easy to get caught up in quantifying his progress when it's really about his quality of life, which is very high. 

And last but not least, so you guys can actually see a casual therapy play session in action, I have a video for you. And let me tell you, I am going to have to post the outtakes sometime soon, because they are ridiculous. But here is about five minutes of different types of listening activities we do with Seth. Plus he's just a cute kid, and I know it's been too long since I've posted him in action! He's come a long way, and I hope you enjoy seeing what you guys helped us accomplish so far!

(For whatever reason, part of the picture is cut off of the video when watching the embedded version. If you click through to You Tube you see the whole thing.)

Joy to the World

Christmas Carols were huge in my family growing up. Every Christmas Eve, we would have a huge party with all of our extended family, and after dinner, when all the guys had escaped into another room, all the women (and a token husband or two) would gather around and sing carols together.They were fancy singers, lots of harmonies and things like that. All the big, popular songs, and some that I've never heard sung anywhere else, like one about a snowman who gives up his life to save a family from a housefire. That one always made me cry.

I can remember being really small and sitting on the stairs, peering through the banister and watching, and then another year playing along on a xylophone in a particularly talented way (or so I thought...the carolers may have probably disagreed). As I got older, I joined in singing with everyone, and then my cousins taught me to sing harmony by teaching me this little three line song that ends in "joy to ma-a-a-an." It still gets stuck in my head all the time.

The point is, we are a family who loves Christmas carols. I grew up on them, and sometimes it just doesn't feel like Christmas anymore when I'm not spending the night before around a table with my mom and all of my cousins and aunts and listening and singing along with the awesome acappella singing of my grandmother and her three sisters. When I was young, my great grandmother would sit at the head of the table, just listening to everyone sing. Funnily enough, she couldn't carry a tune in a bucket, but she loved listening to the music.

Once, at a family reunion during the summer I was fifteen, one night was spent sitting outside singing. I may be remembering it wrong, but I could swear that even then, some Christmas carols were sung.

My kids, although they haven't had the benefit of growing up spending Christmases the way I did, have definitely inherited our love of singing. Christmas carols seem to be right up their on Ava's list, too, as she's woken me up every morning this week belting "Hark the Herald Angels Sing." Every year, the kids participate in our churches Christmas show, where all the preschool and elementary kids are basically herded up on stage and we all cross our fingers and hope for the best. For the record, "best" usually means that at least half the kids sing, most of them do the moves, and no one falls of the stage or burns themselves on the lights. Last year, Jace burnt himself on the lights. But they're adorable and everyone loves watching them every year.

Today was the rehearsal for tomorrow's show, and I sat off to the side while the kids practiced with Evany in the bassinet and Seth on my lap. He was very cuddly today, sitting facing me and patting my back at regular intervals.

Suddenly, the kids started a version of "Joy to the World" that sounded vaguely like a Glee mashup, and suddenly, Seth sat straight up and looked around. Then his face just lit up and he started swaying back and forth and bopping along with the music, holding my hands and making me clap. I was laughing and swaying with him, when suddenly it hit me.

Seth was hearing Christmas carols for the first time.

This time last year, Seth couldn't hear anything. He's never heard a Christmas carol, never been cheered up against his will by a particular song. While I've known that he's loved music since his activation, something about Seth hearing his first carol and responding automatically hit me in a way I haven't felt in a while and I started to tear up, and the enormity of it all hit me all over again.

This Boy;

This baby  toddler who I thought would never hear me read him a book, tell him I love you, yell at him for misbehaving...he was given a huge gift almost nine months ago. We prayed for a miracle, for a cure, but instead God gave us very specific opportunities to help Seth. He left clear signs for us to follow about the right things to do for Seth. When I thought it wasn't my place to "choose" CI's for Seth, he put people who had gone before us in our path. When I wasn't sure about which surgeon to go with, we walked in the door and saw Seth's personal verse emblazoned on the wall of the center of the surgeon we were leaning towards. When our insurance company wouldn't cover bilateral CI's, John's company suddenly changed to an insurance company that covered bilaterals. When that insurance company said that Seth was too young to do the surgery when we wanted it,  our surgeon had the denial overturned in 24 hours. While we were told to have low expectations at activation, that many babies don't start responding for weeks or a month, Seth made the entire journey worthwhile when I called his name and he smiled and turned his head towards me.

We didn't get the kind of miracle you read about in the bible, the one that happens overnight and is some unbelievable immediate healing, but looking back at all the times our way was paved for us before we even knew we were going in that direction makes it clear to me...it was a miracle all the same. My son can hear. And I could not care less that he needs some equipment to do it.

And I have a feeling he is going to love Christmas carols just as much as everyone else in our family.

Within Normal Limits!

Remember to leave your comment here to be entered to win a $50 gift certificate to Nelle & Lizzy! I will be closing the contest sometime after school tomorrow and announcing the winner over the weekend!

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Today? Today was one of those rare days. One of those days that don't seem to come around as often as I would like.

It was a good day. A really good day. And all because of him.

It started out like any other day. We dropped the kids off at school and then headed over to the therapy center to do speech and physical therapy. When we got there, Seth's speech therapist mentioned it was time to do a speech and language evaluation with Seth today. The last time we evaluated him officially was six months ago, and we did an unofficial evaluation right around his birthday.

I was nervous. I may have mentioned that Seth has been obsessed with cruising, crawling, and climbing, and not so interested in listening and imitating and learning new words. It's a normal phase, but it has been really, really frustrating. I was feeling lots of pressure because I was worried that I hadn't been working hard enough with him at home, and that he would have lost ground since his last evaluation.

Oh, and now would probably be a good time to mention that this month marked Seth's hearing half birthday! He has officially been activated and listening for six months now. I can't believe it's already been 7 months since his surgery. (He spent one month after surgery healing up before he had his initial stimulation).

This might be a good time to remind you all of that day, May 5th, 2009, when Seth heard with his CI's for the first time:

Is that not the coolest thing you've ever seen? I mean, I might be biased, but the way that baby boy turned and smiled at me is something I will never, ever forget. This is a baby I thought would never be able to hear my voice. 


So we went through the evaluation, which took the entire session. At the end, she sat, totaling up all the values and then looked up at me, smiling.

Then she told me that for expressive and receptive language, Seth is completely age appropriate. No delays! Not only that...he hit a home run on the listening evaluation and scored 14 points above the level he needed to be age appropriate, which put him roughly around the 24 month level.

Yeah, my jaw was on the floor. Even with the rut we've been in, he still managed to stay age appropriate in all areas and excel in others! What a rockstar!

Then, we headed into physical therapy, where there were several therapy students interning along with our normal therapist. Our therapist spent pretty much the entire thirty minutes detailing how bad off Seth was when he came in for therapy and all the strides he's made. She talked about his hypotonia, and his terrible core strength, and how he could barely lift his head when he came to her.

Then she said that since his first birthday he has done nothing but amaze her, that many times she notices a difference in him from one day to the very next, and that the muscles in his feet and ankles are so much better than they were last month that she's rethinking her decision to put him in orthotics! She says she thinks he's compensating on his own and that while he's still borderline, if he keeps progressing like he is right now, they won't be necessary. We have been about to order his orthotics every single week for probably two months now, and it keeps getting pushed back for administrative and insurance issues, and it turns out he might not even need them! She was also raving about how stable he is now and how far he has come with his sensory disorder...he was literally sitting and playing in the rice box, and for those of you with sensory kids, you probably know how crazy that is.

I could not be more proud of all the hard work he has put in.

After that, we headed to the audiology department at our children's hospital for his mapping (cochlear implant programming). Seth hasn't been in the booth for four or five months, and we decided to put him in today and see just how well he hears.

And, well, knock me over with a feather.

Let me show you a picture.

That's an audiogram. On the left, you'll see the level of sound, and across the top, the frequency (low to high from left to right). On the outer right side you'll see the levels of hearing from normal to profound, and their corresponding decibel levels.

All those letters scattered across it are speech sounds. It's called the speech banana...to hear and understand speech you need to be able to hear all those sounds. If you picture the audiogram like an ocean, if you have normal hearing, the water level will be up high, around the 10-20 decibel mark, and you'll be able to hear everything that falls below that line. Leaves rustling fall at about 5-10 decibels. A baby crying is 60. A dog barking is 70 decibels. An airplaine is 100-110. Wherever your hearing threshold falls, you can hear all the sounds that fall below it (meaning they're louder as you go down the page).

Seth's natural hearing was somewhere between 90-110 decibels. It's marked on the chart by the bubble with the letters NH on the right (Natural Hearing) You can see that according to the chart, without amplification, Seth could hear a jet plane. Of course, having Auditory Neuropathy complicated things and made his hearing fluctuate, but for all intents and purposes, his was a profound hearing loss.

After Seth received his hearing aids, his hearing improved to the level of about 60-70 decibels. That's marked by the bubble marked HA for hearing aid. They gave him access to environmental sounds like the dog barking and loud crying or shouting. On good days, he might have caught the bottom of the speech banana, but as you can see, he was missing a ton of sounds.

Today, Seth tested in the booth. See that bubble with the letters CI? That's where he responded to speech sounds today. 10 decibels. TEN DECIBELS. If you follow that 10 decibel line across to the right, you'll see the bracket it falls under.

Normal hearing.

Normal flipping hearing.

My deaf baby has normal hearing.

I knew it, I knew he could hear remarkably well, but something about hearing that number just makes it hit home for me. My son, who I thought would never hear me tell him I love him, can hear birds chirping. He can hear leaves crunching. He can hear the secrets his brother and sister whisper to him.

Not only that, but he can talk. He has over fifteen words, talks about apples and puppies and going bye bye. He says his sister's name and when he wakes up in the morning he calls out mine.

Just six months ago, Seth was just learning to sit up. He could not roll over. He was hearing well for the first time in his life. He had no words and very limited babbling.

And now, he talks. He climbs. He crawls. He listens. He laughs.

Yeah, today was a good day.

It's my party, and I'll cry if I want to

Before I start whining, remember to leave a comment here to enter to win a $50 gift certificate to Nelle & Lizzy!
You guys are cracking me up with your corny jokes, hilarious stories, and name guesses...some of you have come close, but no cigar yet!

___________________________

Welcome to my pity party! Well, kind of.

So some of you may know I'll be 30 weeks tomorrow. Overall, things in my pregnancy have been going great, aside from giving myself insulin 2-3 times a day and getting really annoying progesterone shots (don't get me started on the one I got today...the plunger wouldn't work and she kept moving it around....ahhh!). The baby (Bindi, you know) is measuring in the 63rd percentile, has hair, and looks pretty cute if you ask me, although she doesn't like to pose for pictures. While my cervix has given us some minor scares a couple of times, for the most part it has been cooperative and stable and not sent me to the hospital. I've only had one hospitalization for contractions so far.

Today I went in for a non stress test and we found I was contracting a fair bit and not feeling it. Then he checked my cervix and found I was dilated 1-2 centimeters, which I was not last week.

I mean, it's not abnormal for people who have been through multiple pregnancies to dilate a bit earlier on, but at the same time, it's just really frustrating. This is exactly what happened with Eli, and within a week I was dilated to 4 centimeters and in the hospital getting a really fun Magnesium cocktail.

I guess I thought we might avoid some of the issues we had with the boys. Instead, things are progressing in a textbook manner the same exact way. It's just disheartening, I guess. I have lots of support and great people around me, but I just miss my husband, and I want him here with me, instead of off with his girlfriend. Then I get mad at myself for even wanting him when I've been abandoned for this whole pregnancy. Ugh. It's just stressful.

My OB basically said to take it easy, but that with my history, he doesn't think doing anything official like bedrest will help. He knows my situation, so knows that it's pretty much impossible for me to get a ton of downtime with all the kids and their school schedules, therapy, et cetera. He basically just said we'll keep an eye on things, give the betamethasone shots to develop her lungs if it looks like she'll come before 34 weeks, and see what happens. He's not willing to risk doing too much to keep her inside if she's intent on coming, what with what happened to Eli and how quickly he went from fine to gone, so it's basically just a wait and see situation...I could keep dilating and contracting, and she could come soon, or I could still be pregnant in a month, or possibly longer.

I hate this. If she has to be in the NICU, I don't know how I'll juggle everything. And just as a sidenote, Seth is no closer to walking than he was last month, and I am beginning to think he will still be a crawler when this baby comes. I was really, really hoping he'd be walking. Ergh.

Oh, and something funny Jace said today:

"Mom, did you know that (name removed!) can't hear?"

"What do you mean? That she can't hear while she's in my tummy?"

"Oh, no, she can't hear at all. She won't be able to hear until she gets her new ears."

"What are those?"

"You know, like Seth's. She can't hear at all now."

"Where did you hear that?"

"Oh, God told me. God talks to me all the time."

Weird, huh? Strangest thing about it was that when I woke up the morning of the day that Seth ended up being born, before my water broke, Jace came up to me and said "Good morning! The baby is coming today."

Ava was talking to her great grandmother about whether or not the baby would be hearing, and my grandmother said "Well, we just have to pray that she can hear." Ava looked at her and said "Actually, I think it's pretty cool that Seth is deaf."

It cracks me up...they literally don't think of his deafness as anything negative or bad, just different. I think that is really cool.

Home again!

Did you know it takes a long time to get from Florida to California?

It does. I always forget that. And for some reason, it always takes longer to get back home from California to Florida. By the end of my second flight today I was ready to be done flying for a while, which works out well, since I definitely will not be jetting off anywhere else until this baby is born!

The kids did great while I was away and were super excited to see me (and I them, of course) when I got back, and we just finished some cuddling and hair salon before bed.Seth was very snuggly tonight and gave me lots of bear hugs. It was very, very nice to get home. Although I love getting to go back to "work" in some capacity every so often and talk about important things with grown ups, the second I get home to my kids I realize that raising them is what I'm meant to be doing, no matter how tedious and difficult it can be. They are such special kids and we are so, so, blessed to have them. I came home to no less than four special welcome home drawings and a baby boy who is saying a new word (bike). Little kids are awesome.

My brain is completely overflowing with things I learned over the weekend...I am so excited to be a part of everything Advanced Bionics is doing right now and I am thrilled to see some of the newest research and independent studies showing just how well people with Advanced Bionics implants are hearing. It's really, really amazing and such a miracle. When I'm not falling over from exhaustion I hope I can string together more than one paragraph about it, but it's definitely not happening tonight.

The coolest thing by far, though, was that this weekend, there were a lot of strangers that came together to talk about how cochlear implants have changed their lives. I met recipients, I met other people touched by hearing loss who have decided to make helping people get cochlear implants their full time job.

It was awesome.

I stood in a crowded, loud restaurant and talked with adults who had cochlear implants who heard and understood me easily. That's something we never thought Seth would be able to do. I met a two year old who knows over fifteen hundred words. I talked with parents whose kids are on the honor roll, who are reading a several years above their grade level, who play soccer and karate and baseball, who all go to mainstreamed school. I talked to adults who told me what speech sounded like before their hearing and how it sounds now...and believe it or not, the answer is "pretty much the same!" I talked to a woman who spent her entire adult life without sound, unable to hear her kids at recitals or in the marching band, who can hear them now. I talked with the President of the company, and with the engineers who design Seth's implants. I talked to the people in charge of developing new products, who listened to us tell them all the things we want them to keep the same, or change, or make better.

When Seth broke one of the components of his processor on Saturday, and my mom called to tell me while I was chatting with the Vice President of Marketing, he made sure that before I left I had a replacement in my bag so that Seth wouldn't have to wait to have it shipped out on Monday. Only after I had the part did I find out that someone else who worked at the company had driven to another city on a Saturday to get the part we needed.

The common denominator of all of those interactions? Every single one of those people, whether they were AB employees, recipients, or parents, felt like a friend. By the end of the weekend I knew personal details about every single one of them (and more than I needed to know about a few! =P), and I would count them all among my friends.

I love this company. I am so, so glad that Seth is a part of the Advanced Bionics team.

OK. Now I have to go to bed. After I go find them all on facebook.

29 weeks, AB, kids who clean!

29 weeks, a few days late. Forgive the picture quality...I left my camera at home. I'm midway through my trip to Advanced Bionics headquarters in California and I am having a great time and getting so much out of it...I can't even tell you. We met with the President of the company today, and took a tour of the building where they build each and every implant. We even got to go into their mock OR room where they train surgeons and check out how they teach the surgical technique using actual mastoid bones. Tomorrow we are doing some really exciting break out sessions and focus groups with the engineers of the company.

It has been so cool to be around people with our brand of implants. I mean, kids do great no matter what implant they get, but we're one of the only AB families in our area and it can be hard.  It's nice to be able to discuss some little detail that no one would understand if they didn't have Advanced Bionics. I'm so excited about some things that seem to be in the works here.

There are several parents of implant recipients here, and also several adult implant recipients themselves. It is so cool to talk to adults who were deafened post lingually who can actually tell me what things sound like versus what natural hearing sounds like. Everyone is really great, friendly, and feels so passionate about cochlear implants. It's really cool.

It's also amazing to talk to parents of kids who are a little older than Seth and see where there kids are. I think all the kids whose parents I've spoken to are mainstreamed and excelling....on the honor roll and so on. There is one eighteen year old here who is a junior in COLLEGE and studying political science. He wants to be a politician. It is so crazy to see how well he has done. It makes me excited to get home to Seth and work even harder.

Speaking of Seth, I am definitely going through withdrawal from this face:

I mean, I'm seriously missing Ava and Jace, too, but I've at least been able to talk to them on the phone multiple times a day. I'm just not used to being without Seth, who is always with me just about every second. I miss all the kids, a lot. Apparently today they took it upon themselves, completely on their own, to clean the kitchen counters and sweep the floors. When Seth saw what they were doing, he went and got the dustpan and started loading toys onto it. Cleaning! I love it. I hope they keep it up when I get home! My mom said she overheard Ava tell Jace that he should always sweep the floor before he mopped it. Ah, a girl after my own heart. They crack me up.

The baby has decided to try to shove random body parts out of my stomach this week. I don't know what they are, but they're sharp and pointy and at one point, my stomach was insanely lopsided because she was laying in some weird position. She's definitely jumping around like crazy. I forgot how wild their movements get at this point in pregnancy.

My OB appointments this week went pretty well...she's over three pounds now, and measuring in the 63rd percentile for growth. Her stomach is measuring larger, which is normal for babies whose mothers have gestational diabetes, and she has hair! That's awesome. Hair. I totally have to start getting bows and headbands for her. Some really obnoxious ones with humongous flowers. Can't wait.

Perspective

Last year, I walked into the Symposium for Early Childhood Deafness with my newly diagnosed profoundly deaf baby boy. I sat through hours and hours of lectures, my brain exploding with new knowledge about things I never thought I'd need to know anything about. Cochlear Implants. Hearing Aids. Cultural Deafness. Total Communication. Oral. Auditory Verbal.

All of it was covered, in different sessions, all with different slants depending on the background and opinion of the presenter. Because the conference is held by the Department of Education, they present a balanced viewpoint, showcasing an equal number of presenters and lectures on both signing and CIs.

I listened to speech pathologists talk about the best way to use sign language in therapy. I was told that it was imperative for kids with hearing loss they they follow the 1-3-6 model...diagnose by 1 month, amplify by 3 months, and enroll in therapy by 6 months. Luckily, Seth fit in that mold...he was diagnosed at 2 weeks, had his hearing aids at 6 weeks, and started therapy at 3 months. We were ahead of the curve. I listened to geneticists talk about the latest reasons they thought hearing loss occurred, and the odds of passing it down in a family. I wrote down the names of obscure genetic tests that Seth should have that not many clinics were doing preemptively yet.

I wandered the exhibitor's hall and met parents who'd moved their whole families to St. Augustine to attend the school for the deaf and blind. I met parents who had kids with one cochlear implant, and even one who had two. I talked to parents who signed, and parents who spoke. There weren't many that chose to do both with their kids. I listened to reps from different schools tell me about each communication style, and saw demos of products I never even knew existed, like smoke alarms that shook your bed. I compared three different brands of cochlear implants, although I wasn't even sure that's what our choice would be.

Everyone was nice, and they all went on and on about Seth, who spent most of the conference sleeping in his bassinet attached to his stroller. I left feeling overwhelmed but with a clear purpose. I needed to get Seth into therapy. I needed to decided our game plan, and whatever it was, put it into play.

Over the next year, I did just that. We took sign language classes and Seth had a deaf educator in the house every week. I had him in speech therapy by the time he was 12 weeks old. Within a month or two, we had decided cochlear implantation was the way to go for our family, and we started trying to make that happen. Then we decided we weren't waiting until he turned one, and we fought our insurance company and started fundraising for Seth. When a roadblock came up, we changed our route. When our insurance said no way to two, we were blessed with the opportunity to change insurance companies, to one that did allow bilateral surgery. When it became clear that our goal of early bilateral implantation wouldn't be a possibility at the center we were at, we changed to a new surgeon when Seth was 6 months old. He fast tracked us and when our insurance denied Seth's surgery due to his age, he appealed it and had the denial overturned in less than 24 hours. In just a few months of fundraising, we had the money to cover Seth's exorbitant surgery costs.

Seth was incredibly blessed. When he was just 8 months old, he received both of his implants in one surgery that lasted just under two hours. It was incredibly short, and we had been led to believe from others who had been through it that it would be over twice that length. He was activated four weeks later and when I called his name for the first time, he turned to me and laughed.

That has been Seth all the way. He loves to hear. He was localizing sound by the day after his activation, and he was saying words within weeks. When he turned one, his speech and language evaluation graded him at 12-15 months. Not delayed. Our deaf baby had no language delay. All the work that had gone into the past year was worth it. He was hearing, and he was loving it.

That's where Seth was at when I headed into the conference this year. Same people in the exhibitor's hall, some of the same presenters, and some of the same type of lectures. But I came away from it with a totally different feeling.

Panic.

Yeah. I know. Seems weird. You see, last year when I left, I had a hard but relatively simple job. Get Seth what he needed. He needed CIs. We made that happen with the help of God and lots of other people. Now that he has his implants, it's not so simple. He's made it to one year with no delays, but the bar just got immeasurably higher. After a year of age, kids language explodes. After two it expands exponentially. Will we be able to keep up? It's just getting harder, with a wiggly 14 month old who is more interested in learning to walk than learning to talk right now.

This year, I walked in with my babbling, crazy haired one year old with bilateral implants. I sat through lectures on the state of the nation of kids with hearing loss, if you will. There have been studies that followed a ton of kids...about 700, and we were shown where they were doing well, where they were doing ok, and where they were doing poorly. They were doing poorly in a lot of areas. It was overwhelming. What most people don't realize is that kids with hearing loss learn differently that other kids. Even when they hear well, for instance at a level of mild hearing loss, they're still missing a TON of what goes on in the world. They don't learn incidentally the way hearing kids do, they can't eavesdrop on conversation and learn all kinds of things they're not supposed to know that way. For the most part, kids who use CIs and hearing aids only learn what you teach them.

Think about that for a second. How many times have you been amazed by your child telling you something in spanish that they saw on Dora, or a prayer they picked up on the radio? Seth has a bubble, if you will, of good hearing, where he can hear clearly. He may hear us call him from further away than that, but it's going to be mostly noise when you're more than a few feet away from him. It changes a lot. Because these kids learn intentionally, they are very literal. What you teach them is what they know. They grasp concrete concepts like what and where, but when and if are hard for them to grasp. Have you ever tried to teach someone whose first language is not english what "the whole nine yards" means? They have no clue, no concept of theoretical or idiomatic language. How do you teach that? At this point, I don't know. But I know that this is where these kids are struggling. For instance, Seth has about 15 words right now, and do you know how many he has learned that I didn't sit down and expressly teach him? One. One word that he picked up on his own out of fifteen. Book. And that was amazing.

So leaving the conference this year, which was filled with so many great and interesting people and who taught me so much once again, I was surprised. Some people that welcomed us last year didn't really talk to us this year, because the processors on Seth's head didn't fit in with their teaching or their school. Reps from the other CI companies didn't speak to us at all. Others, who saw his gear and knew we had chosen the way we did, swarmed us and were fast friends. It was odd. I am still overwhelmed, but this time, my job is not so simple. It's not going to be as easy as simply fighting for my baby to get the surgery he needs. It's so much more complicated...I have to learn how to teach him, because no one else can. One hour in therapy a week isn't going to cut it, and even when he's in school, for kids with hearing loss, every minute has to be a teachable one. They are missing so much that other kids get without even realizing it, and it's going to be up to me and his support system to fill those gaps in for him.

This is what I want people to know. Getting your kids implanted is not the finish line, it's that starting line. Activation day is just the starting gun going off, the clock starting on the rest of their lives. It's up to us as their parents to teach them to listen, and once they can listen, to fill their ears with things that they need to know. It won't happen if we don't do it, if we don't put them in the right places with the right people who will continue to teach them well and with understanding for their differences once they're in school. It's little things. It's sitting the CI kid next to the teacher for circle time, it's cutting down on acoustic noise in the classroom with tennis balls on the bottoms of chairs. It's remembering that even though they look, talk, and act like a normal hearing kid, sometimes they're not. This is a lifelong challenge, and it's one I want to prepare Seth to take on for himself one day. I expect him to be able to advocate for himself one day, to teach his classmates about his equipment and explain to his teachers how he hears. But before he can do that, I have to do it for him. It's a big job, but he deserves someone to do it right.

It's not so different from any other kid, really. It just takes a little more intentionality, and that can be hard in these days of fast food and fast learning, when kids are reading in Pre K. There are lots of choices we'll make for Seth, probably just as controversial as implanting him in the first place, like whether he'll go to a mainstream school or a deaf one, whether we'll start him on time or hold him back a year. Whether ASL or cued english will ever be a part of his life.

It's just funny what a difference a year can make.

Jace & Big Green

This little boy will not allow me to call him "little" anymore. He's big! He's four! He's practically bigger than Ava (not quite)! Apparently, for Jace, 4 was THE number he's been waiting for. Now he can leap tall buildings in a single bound, pack his own lunch, and buckle his own carseat.

Of course, when he was sick today, he still spent the whole day curled up by my side, so I guess he's still just a little bit little. I'll take it.

Even though I spent roughly half his birthday in the hospital and he spent the majority of the rest of it in school, he had a great day. He woke up at 5:30, had his very special Larry Boy cake for breakfast, and opened his presents. His very favorite was a bike he had been begging for, and the first thing we had to do was deface it with as many Spiderman stickers as possible. It was the concession I made to get him to agree to get a bike that wasn't actually the Spiderman bike that had like, 1 star reviews. I don't even know why he likes Spiderman so much...he's never seen a comic book, movie, or cartoon. He has no idea who Peter Parker is. But Spiderman? The Bomb. Just because. I hate character stuff.

After school we headed out to try out his new bike. Ava was in super big sister mode, as she helped him remove himself from a few curbs and get back on his way.

The morning after his birthday, Jace woke up and said "Am I still four?!" When the answer was yes, he grinned hugely and said "Thank You!" He's such a funny boy.

___________________

I loved all your comments on my last post! You guys crack me up. I'm kind of ticked that I responded to a bunch of comments and apparently they never went through. That's annoying.

Tomorrow, we're heading up to St. Augustine for the weekend for the Florida Summit on childhood deafness. I was able to attend last year, soon after Seth was diagnosed as profoundly deaf. I spent the whole weekend listening to lectures about choices in deafness, the importance of early intervention, visual and auditory learning, and I got to meet some great people, including the person who became Seth's audiologist, who I love. LOVE. I'm thrilled to be going back this year with all the experiences I have under my belt now, and I hope there are parents with new babies there who can benefit from the great start that I was able to get having all of these great, experienced professionals around in one place to talk to.

I was packing up Seth's CI stuff today, back ups and extra cables and whatnot, and I made a mental note to pack the car charger for Seth's batteries. Then I literally cracked up at the irony that I can recharge my kids ears while I'm driving. Isn't that wild? It all seems so normal until I stop and think about it, and then I realize...that's pretty weird. I'm sure people in the grocery store give us really weird looks when they hear me tell one of the kids to put their brother's ear back on. It's so funny the stuff you get used to.

In fact, the other day I was thinking about the new baby, and I actually thought "I will be really prepared this time around...maybe we can get her implanted at 6 months instead of 8."

I'm so used to Seth that I literally forgot that there's no reason for us to think that the new baby will be deaf, too. In fact, there's very little chance of it, as Seth's deafness is not genetic. But still, I actually can't imagine having a hearing baby, one who won't sleep through the kids screams, who will startle and wake to a voice instead of a touch.

I think it's been on my mind even more because at Ava's 5 year old check up, she failed her hearing test 3 times in a row in the same ear. She passed in the other ear, but consistently failed in her right ear. It's odd, because the test was one she passed last year, and it's a test that identifies a completely different type of hearing loss than Seth has, so there is no tie in there.

Seth's audiologist is going to do a complete evaluation for Ava next month, and we'll get some answers about what's going on. When I talked to her (she has no idea she even had a hearing test, much less failed it), she told me that she could hear better out of one ear than the other, and every time I asked her which ear worked better, she pointed to the one that passed the test. It was interesting, and I'm anxious to know what the deal is. I'm not worried, as either way we'll be fine...if it's nothing, that's great, and if she does have a hearing loss, well, we're well prepared to deal with it after all we've gone through with Seth.

It's always something around here, huh? Apparently God thinks something really bad would happen to me if I was allowed to be bored for even a second.

What are you doing this weekend?

Rhyan's Hope Run to Hear

This should be roughly 17 seperate posts, but I'm exhausted, so I'm throwing them all in together. We headed to Orlando yesterday afternoon, and spent the evening swimming in the pool and eating at McDonald's. Jace's choice. When we arrived at the race site at a little after 6 this morning, Seth was not impressed. Jace said "Mom, do you realize it's still night time?"

Jace, however, was incredibly excited about running in the kids race. We manned the registration booth for the kids race and ended up with over 40 entrants, from the ages of 1-11.

He made me pin his number on very carefully. Then he had some adorable brother bonding time. Are these not some of the cutest boys around? I think so, but I may be biased.

Seth leaning his forehead on Jace like that is his version of a hug. He headbutts very affectionately all the time. It's hilarious.

There was an awesome spot set up for all the racers to get massages before and after the race. One of the therapists offered Jace a massage and he said no, very quickly. Then he told me "She didn't understand. I DON'T WANT A MASSAGE!" I think maybe he thinks massages are something bad. Like bedtime. Who knows. He'll learn that they're glorious someday.

The turn out was awesome! It was so cool to see everyone out there running or walking their four miles to help raise money for Rhyan's Hope.

The kids and parents in this picture are other cochlear implant families. It's so funny that this time last year Seth was just a new baby, just past his diagnosis, and now he's hearing just like these kids! Last year, these were the kids whose parents I talked to over and over trying to make our decision. Now he's one of them!

The race was so cool. Some of the first to finish completed the four miles in less than 22 minutes. There was also an 81 year old woman who ran the race! It was awesome to see. On the back of her shirt, it said "You just got passed by an 80 year old lady!" Hilarious. She probably would have passed me. And by that I mean definitely.

The boys got bored and decided to examine the sidewalk. Seth was multitasking by crawling and eating a bagel. It hit the ground several times. Yum.

Still good! Just knock the dirt off it, right?

Contemplating whether to go after it. I stepped in at this point. Even I have standards.

Jace and Rhyan's little sister, Evynn, getting read to run!

Can you see him? He's in the blue shirt.

On the way home! He ran hard. I was worried he would freak out if he didn't win, but it turned out he didn't really notice and was thrilled with his very own blue ribbon.

It was awesome to be able to be a part of such a cool event, and I can't wait until next year's second annual Run to Hear! Maybe I'll actually run in that one. Or not.

After the race we went out to brunch with a ton of the people who made the event happen, and the kids went completely nuts, probably due to how overtired they all were from such an early start. The staff was glad to see us go, I am sure. But it was so cool to be able to catch up with everyone and help them raise money for their next recipient. Now I'm going to go sleep for about three days.

We're off to the races!

I am running frantically around the house getting all of our stuff in order for an overnight hotel stay.

Did you know that hotels are just the coolest things ever in the entire world? My kids think so, at least. They love hotels. Hotels are like Christmas to them. It's hilarious. Of course, I was the exact same way when I was a kid. My mom and I would go stay at a hotel and do nothing but hang out there, and I thought it was amazing. AMAZING. You offer me a nice hotel and some nice meals out and I'm yours, I tell you. Hotels and restaurants are apparently the way to my heart.

And my children have taken after me. It's hilarious.

Luckily, the hotel we are staying in tonight does not have floral comforters. I cannot stand floral comforters, and they ruin the whole hotel thing for me. I know, weird.

We're heading to Orlando tonight so that we can get up bright and early tomorrow morning to be part of the Rhyan's Hope Road Race tomorrow! My original plan was to actually run it, but then I got knocked up. Oops.

So instead, I'll be helping out and hanging out, letting Seth meet and greet all the awesome people coming together to help raise money so that other kids like Seth and Rhyan and Jillian can hear. It should be a great time and I am so thrilled to be a part of it.

Plus, you know, I get to go stay in a hotel. Hotel!!! So awesome.

Shots of Seth

I recently received the cd of photos from the shoot the photographer did when we were in California visiting Advanced Bionics. I wanted to share a few  a bunch of my favorites with you guys! It's crazy seeing how much he has grown just in the past month or so. He's turning into a little boy...luckily he still likes to cuddle with me.

Let's get technical, technical.

I've been meaning to post about Seth's gear in a little more depth, and a recent comment spurred me on...thanks! First off, I need to say that this is a walk through by me, and I am not all that technical. So don't swear by the names or explanations I give. I don't represent the company that manufactured Seth's Cochlear Implants, Advanced Bionics, but I sure do like them! Point is, this is a laypersons perspective, and as such, may not be completely technically correct.

With Cochlear Implants, there are two major pieces of equipment. The first is the internal implant, which is inside Seth's head, embedded in his skull. It consists of a magnet and a computer chip, which is housed in titanium to protect it, then padded in silicone. There is an electrode array that is spiraled through his cochea. The nickel in the below picture gives you an idea of the size of the internal implant.

Now, onto the outer piece of equipment, the processor. Ava's friends call these his jetpacks. I labeled the below picture to make it a little more clear.

The bottom half of the processor is a rechargeable battery. On the top half, you have a sensitivity dial, which adjusts the sensitivity of the microphone that transmits sounds to Seth's internal implant. In loud situations, the sensitivity could be lower, in order to catch only the louder sounds, or it could be turned up in order to catch a wider range of sounds. The Status LED blinks red when the processor is on but disconnected from the internal implant. When the processor and internal implant are connected, the LED blinks green when it processes sounds. The Program toggle switch is used to switch between various maps. For instance, Seth has two programs that are designed for every day listening, and one that is designed for listening in loud environments. That program is quieter, so when sounds are bother Seth, we can change his program to turn it down.

Here is a picture of a Processor disassembled. Pretty simple...the battery slides onto the processor, the T-Mic twists onto the aux post, and the headpiece clips in. The T-Mic routes the microphone into the ear canal so that sound is heard in a more natural way.

Here's what it looks like all put together.

Here it is on Seth! The headpiece magnet attaches to the magnet in the internal implant, and the processor fits behind the ear. This is the way that the majority of Cochlear Implant users where their device. It allows for great localization of sound, you don't have a lot of cables to deal with, and it's light. However, when you have a baby who was implanted at 8 months of age, this set up is a little overwhelming, which is why you've never seen a picture of Seth set up this way before.

In the past, you had two wearing options. The above set up, called a BTE (Behind the ear) or a body worn set up, which consists of bulky processors worn in a harness on the child's back. We weren't a fan of either for Seth, so we started out, on the advice of our awesome audiologist, altering the set up to fit Seth. We used cables and headpieces designed for the body worn processor along with the BTE Processors pinned to Seth's shirt in a modified set of Ear Gear. It wasn't the prettiest set up, but it worked for us.

Then came our trip to California to visit Advanced Bionics! In addition to getting to tour the factory and see cochlear implants and processors being made by hand in the good old US of A, we got to see just what Advanced Bionics has been working on lately...and try it out! AB has been working to offer more wearing options for their pediatric consumers and bilateral users, and since Seth is both of those things, I love it!

Soon, the headpiece cables will be available in multiple lengths, making it possible to wear the BTE processor at Ear level, clipped to a collar, or pinned to a shoulder. Like what we were doing before, but prettier. There's also some large number of color caps you can interchange to either blend in or stand out. We like to stand out.

If you look really closely here, you can see the outline of Seth's implant. It's placed at an angle just behind his ear.

Putting the headpiece on is easy, even if you can't see the actual implant. As you bring the magnet to his head, you'll feel a little magnetic pull. Set the magnet in place, and there you go!

Once attached, it still comes off easily. If the magnet is too strong, it can damage the skin, so it is very easy for a baby to yank it off. When Seth was first implanted, he pulled his right magnet off all the time. Now that he's realizing that he loses out on sound when he pulls it off, he doesn't do it as much, unless he's ready for a nap. Then all bets are off! The new style headpiece we're using also helps...it's lighter and thinner, so I don't think it bothers him so much, and the edges are rounded, which keep it from being knocked off as much when he rubs his head on things. But I won't lie...we pop magnets back on his head about 100 times a day. But that's why I love our wearing option...the magnet is the only piece of equipment on his head. If he was wearing the processor behind his ear, we would be replacing both items a hundred times a day, and that gets really old, really fast.

So how do we keep the processor off his head and make our lives easier? Why, with the KinderClip. This is the device we're trialling for AB right now. When it's commercially available, it will be an alternative wearing option for those who don't want to go with a BTE or body worn configuration. Here it is disassembled, just like the processor above.

The KinderClip system is simple. In addition to the processor and battery, which are the same as in the BTE configuration, it replaces the shorter headpiece cable with a longer one, and replaces the ear hook with an aux cover to protect the metal post that the earhook attach to. In this set up, there is no need for an ear hook. It utilizes the microphone that is on the processor. The additional piece of equipment is the actual KinderClip, a plastic clip that the processor clips into so that you can clip it to a shirt. Or whatever you want, I guess!

Here it is all put together. You'll see a black clip at the bottom...I use that to clip any excess cable to Seth's shirt so that it's not just flopping around. In the below picture, you can see it all on Seth.

This works for us perfectly. I have yet to have the KinderClip fall off his shirt, even when he is rolling around and playing on the floor, and when he falls asleep or goes into the car, I can easily unclip the processors for safekeeping. For us, it's all about making life as simple as possible and letting Seth be Seth, not a kid with tons of equipment. We want to make sure he has lots of time every day to be a kid, and not waste any replacing gear over and over or taking time to fit something on him. This way, it's quick and easy. Clip it to his shirt and pop the magnet on his head, and off we go!

I know that's all really just aesthetics and convenience, though. How does Seth actually hear with this stuff? Really well, actually. Sound goes into the microphone and is transmitted through the processor into the internal implant. At some point along the way, sound is encoded into electronic something or other, then sent through the electrode array through his cochlea and inner ear to his brain, and by the time he hears it, it's recognizable to him. Believe it or not, there's no lag time for all of that to happen, either. If I call his name, he turns immediately.

He can hear whispers if he wants to, and can also be a selective listener like his brother and sister if it suits his fancy or he's busy with his toys. He repeats sounds we make, babbles (loudly) and so far, he can say Mama, Bye Bye, Ball, More, and Puppy appropriately (meaning he's not just imitating them, he's attached meaning and understand what each word means). Ball is by far his favorite. We hear him scream ball roughly 3259845 times a day.

In other words, Seth is pretty much just a typical 11 month old with some cool jetpacks on his shirt. While he'll always be a deaf kid, he also functions very well in the hearing world thanks to his cochlear implants. In many ways, things will get harder as life gets louder and more complicated, as he is expected to follow lectures in school and conversations between several friends at once. But I have no doubt that he will work hard and exceed all of our expectations, once again.

Please feel free to ask any questions...we love sharing about Seth's CI's.