Look who's TWO (and a half)!!

Guess who turned two and a half today?

Turns out it was this dirty, pen-marked, blindingly pale, shaggy-haired blond beach bum here:

I myself did not realize it was such a big day for him until after lunch, when my previously clean baby boy was covered in random dirt and grime. I swear, he attracts dirt. He just had a bath. Can't even tell. Still, as soon as I realized it was his half-birthday, I grabbed my camera and snapped a few pictures without cleaning him up at all or even throwing clothes on him. I figure why not be real about it? This is Seth as two and a half, dirt, pen marks and all. 

Seth can be a very serious child. About what, you might ask? Well, he takes his time on the phone very seriously, indeed.

As two and half, Seth is both extremely sweet and more stubborn than ever. He's understanding so, so much, though, it's really exciting. The other day I told Ava she needed to go find her jeans and she was lollygagging around instead of looking. A few minutes later, Seth came running out of her room, calling "Ava! Ava! Ava!" and waving her jeans over his head. He's the best finder and picker-upper in the house, bar none. He listens really well and is extremely thorough. When he's picking up, he'll even look under the couch to make sure he's not missing anything. I won't lie, help picking up around here is a very quick way to my heart, although this guy has always been there. He's also very big on opening doors for me and helping me sweep.

He's also really into his siblings lately. They play and fight in equal measure, but they're very sweet. Ava has started reading to him every night before bed, which is just really cool to watch. We have a great bedtime routine going right now, and Seth really looks forward to it every night. It's a nice moment for us to connect on our own and I love getting a few minutes to look into his eyes and sing to him and dork out a little. 

Here's Seth saying "Ball" while playing one. The first picture is "B" and the second is "All!" I was pretty shocked he was even saying it with any camera on him...he has gotten very careful about performing for cameras these days. Just another issue with control for him. I used to take videos to show to his therapists to prove he could say things, and then he caught on. 

Overall, his speech is improving, though, and I'll take it. Today when I told him it was his half birthday and sang to him, I heard him singing happy birthday to himself a few minutes later. He sang it all day long while he played. He's kind of the cutest thing ever. 

Happy half birthday, buddy. I love you!

Dear Seth: Look who's TWO!

We've had a crazy busy weekend celebrating this little boy's second birthday! He turned two on Saturday and we spent the entire day following his every whim. He is now one bossy kid, let me tell you! All the gifts and catering to Seth totally went to his head and now he thinks he runs the show. 

Which he kind of does, actually. 

Dear Seth,

Well, you're officially two! You've been acting two for a while...being bossy, throwing two year old tantrums, screeching like a barn owl when things don't go your way. But you're finally really two. You're a tall, solid boy, big for your age, but that doesn't stop you from insisting I carry you all over the place and hanging off my legs. You're just a little attached. You are the sweetest kid in the entire world and you give the absolute best hugs and kisses, too. 

We went to pick up some new ear molds for your cochlear implants the other day, and we saw the Audiologist who did your initial ABR test, the one where we found out you could hear. She was an intern then, just starting out, and you were her very first profound kid. It was so cool to catch up with her and let her see how well you're doing. It was kind of emotional for me, thinking back to those days when I had no idea where you and I would end up, whether you'd ever call me Mama or hear me tell you I loved you. Two years ago, you were one sick kid, not even breathing on your own. 

And now...two years later, we have come so far sometimes I can't even believe it. You're happy, healthy, and you have been a bigger blessing to all of our lives than I could have ever imagined. You have blessed us beyond measure. Your older sister told me the other day that she didn't know what she'd do without you, and neither do I! 

You're funny, silly, and incredibly strong willed. You will fight to the death to get a sip of my soda or other junk food. You don't let your brother and sister push you around, either. You stand up for yourself and you get your point across remarkably well, with words or without. 

Most doctors say that preemies catch up by the age of two. That hasn't been the case for you...you're still in several therapies with no end in sight. I won't say it wasn't frustrating to adjust to therapy long term. For a long time I thought you'd have graduated from all of your therapy by now, but that's just not the case for you. You have something called ataxia...your gross motor muscles just don't always cooperate with you, but you're learning to compensate for those issues every day and you don't let it slow you down for a second. You run, climb, play, and the fact that you fall more often than other kids doesn't seem to phase you at all. 

Your hearing, though, is remarkable. You amaze me with what you hear and understand, and you frustrate me mightily with your stubborn attitude about just who you will deign to speak to. You're shy, reserved, and you don't perform for anyone. If left to your own devices, though, you'll talk up a storm...if you're in the mood. You don't make anything easy, but it's always worth it. Hearing you call my name or say "Thank You" when I hand you a glass of milk still amazes me. Watching you drop everything and break into joyful dancing when music comes on is the best thing ever. 

Your therapies and hearing and speech and physical issues are nothing, though. I mean, it's miraculous to me that you can hear, but it's even more miraculous to me that you're here, that you're my son, that I have the privilege of watching you grow up with your brother and sisters each and every day. Your older brother didn't get this chance, and I'll never forget how blessed I am to wake up every morning to you shouting my name and shaking your crib back and forth, putting dents in the wall we painted so carefully. When I pick you up in the morning, you lay your head on my shoulder and you pat my back with your hand, and it's one of the best parts of my day.

I'm so proud that you're my happy, joyful, cheerful, loving, demanding, clingy, stubborn, strong willed, adorable, feisty, cuddly, beach bum of a little boy. I love you more than words could ever say. 

I love you, Seth B.

Dear Seth - 18 months

Dear Seth,

You're eighteen months old. Eighteen! I'm very proud (and relieved!) to announce that as of now, when you're actually turning the corner to eighteen months and a half, you are finally walking full time. 

I might have thought this day would never come. 

But here it is, and you're on the move. The downside is that now that you're not crawling, your medic alert bracelet doesn't clank on the ground and keep me continuously aware of where you're at in the house. Now that you're wandering on two feet, I'm always shocked at the places I find you. Your sister came to me this morning and told me that she was sure you would grow up to be a scientist, since you definitely liked doing experiments involving the toilet.

Sure enough, that's where I found you. You were probably measuring the relative volume versus mass of the toys you were tossing in there, right? 

I had a sneaking suspicion you were becoming a giant like your older siblings, and our pediatrician visit confirmed that for me. You've jumped over 50 percentage points on the growth chart, and you're off the charts for weight. You're 27 pounds and 36 inches tall and outgrowing your clothes in roughly a day and a half. I'm unprepared, since you literally stayed in the same clothes from about 6 months to a year because you did that whole stopping growing thing. By the way, that was no fun.

No more, though! You're eating everything in sight, growing like crazy, and you're a head taller than babies who were previously towering over you. Talk about making up for lost time! 

You're still in therapy multiple times a week, and you hate performing on command. You're obnoxious like that. By our last count you "have" between 25 and 30 words, meaning that we have heard you say them correctly and in context, but you by no means say them when we ask you to. When I ask you to say something you look at me like I am both insane and stupid rolled into one, but then you look at me and say something crazy like "Uh-huh, at the table." Oh really, Seth? You'll tell me you want to eat at the table, stringing multiple words together, but you won't say BALL when I ask? Ridiculous. It's a good thing you're cute.

You're still very cuddly, which I love, and you have become a champion hugger. You spread your arms out wide, grin, then throw your arms around me and squeeze, then throw in a few back pats for good measure. It's pretty much the highlight of my day. You've also started kissing people right on the lips, which is a pretty intense encounter, since you drool more than most babies I've seen. You'll lounge on the couch or floor with me and your brother and sisters and just veg out, which is a very important activity in my mind. I'll do whatever I can to foster that in all of you. It's a sacrifice I'm willing to make.

Now that you're walking, you have no fear...you climb all the funiture, basically throw a few backflips off the sides and back, and refuse to let anyone help you do anything. Unless you want people to do everything for you, which is apparently totally different. If you see me coming with a clean diaper, you throw yourself down on the ground and hike your legs up in the air, which is just as funny every time you do it. 

You're absolutely in love with your baby sister Vivi, which is a huge relief. You insist on hugging her first thing every morning, and if she's not in her usual "spot" in the living room you're known to get pretty worked up until you manage to ascertain her location and check it out. I think you're going to be super protective of her and drive her up the wall. It's going to be awesome. 

Basically, you're still totally my baby, albeit a big, unwieldy one. You're finally sleeping great without waking at all and I am in love with that. You're very conscious of strangers, and you refuse to go to most people. I love you so much it hurts. Everything we went through, you and I, in your crazy first year of life has really bonded us in a special way. I have been thrilled that this year has proven to be much easier and more laid back for you. You're just a typical kid now, and boy do I love that. 

Happy 18 months, Seth. You rock my socks. 

Love, Mama

Happy Birthday, Baby!

Seth is one year old today! Well, technically he is one year old tonight, since he was born at 10:35 PM. But I thought today it would be fun to look back at a picture from every month of Seth's life. What a blessing this baby boy is to our family.

Thanks to all of you for sharing Seth's first year of life with us!

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.

11/12's of a year old!

Dear Seth,

Today, you're 11 months old.

Wow. I can't even believe that. 11 months is awfully, frighteningly close to a year old.

A year old!

My baby boy...

Making the leap from infant to young toddler, before my eyes. I can't believe it. It feels like just yesterday, my best friend Mara and I were walking downtown on the 4th of July, cursing the traffic, cursing the heat. She was on high stress alert, very concerned that I would go into labor right then and there, before the shower she had poured her blood, sweat, and tears into could happen.

Luckily, you're an accommodating little guy, and you waited. You waited until after my beautiful baby shower, until five days later, and then you decided that enough was enough. As I'm beginning to learn, you make things happen when you want them to happen, and that's all there is to it. I was 34 weeks, and I was getting ready to head out to a pool play date with Mara and our friend Lanie and all of our kids, but you had other plans.

As I stood in the bathroom, taking stock of what was definitely amniotic fluid pooling around me, I called out to my mom in an overly calm voice, asking her to get around to head to the hospital. I called the Doctor and he said to get there 5 minutes ago. I texted Mara.

My water broke, I can't come to the playdate. 

She called me right away, her voice high pitched and quick. "What happened? I'm coming to the hospital." Her voice sounded the same way it did the day I called her from the hospital to tell her Eli's heart had stopped.

But you? Your heart had not stopped. I heard it immediately, chugging along,  as the nurses rushed me right through triage and into a room, right past all the other laboring women waiting for a room. They didn't even let me change...they got you on the monitors first. Apparently, you get really good service in L & D when your last baby died on their watch.

This time, there was no talk of waiting and seeing, no preventing labor until 35 full weeks, even if water was broken. This time, everyone wanted that baby, you, out. Now. Preferably sooner. But you took your time, and you waited until we were able to see who won So You Think You Can Dance and I was completely convinced that I was never going to make it to 10 centimeters, and then you decided it was time.

It all happened so quickly, and so slowly. The doctor stood back, and no one was around me, and everyone was around me. They were there, but it was just me and you. My doctor gave me free reign to push or not push whenever I wanted. In fact, at that point there were no monitors on at all. I remember feeling shocked as I felt you slip down the birth canal, and in fact, on the video, I am very quiet and then I say "Oh my Gosh!" Then, quickly, two pushes, and you were here. You took your sweet time to cry, but you did, and then we were all crying, and laughing, our family  and our friends and my doctor, who also cried when he delivered your brother Eli. Then you were on my chest, breathing. So much like your brother. So different.

It was all downhill from there, of course. But that's not important now. It was a beautiful birth, and you were a beautiful baby. That's what everyone kept saying at the NICU team checked you out. "He's so cute! I mean, really, he is SO cute!" And you were a beautiful newborn. A beautiful baby. And now, you're turning into a beautiful boy.

But as handsome a boy as you are becoming, what is more beautiful to me is your kind spirit. It just exudes from you, in your easy smiles and your delightful dimples. You are a bundle of joy, alright, smiling as soon as you wake up and screaming in laughter much more often than you cry in frustration. You've had more than your share of difficulties, Seth, and many things that have happened in this past eleven months overwhelm me even when I think of them today. But you powered through it all with such grace and aplomb that there is not a single, solitary person who would every think of you as disabled or challenged, or anything less than perfect.

You have rewritten all of my definitions, the things I thought I knew. You have taught me so much in 11 short months...how to deal with trial by fire, to have grace in immeasurable difficulty, and how healthy and normal are words that mean nothing at all. What words do mean something? Heart. Drive. Courage. Love.

You have all of those in spades, even as a baby. Your life won't be easy. No one's is. But if you continue as you are going, you will keep changing people's opinions. You will teach people what God and technology can do together, hand in hand. You will make many, many people proud.

You already have.

I love you, Bubby. 

Mama