Low-Tech

As you can see, I found my camera cord! Here are the pictures from Ava's dance recital. She did a bunch of dances and even had a solo! Thank goodness her hair stayed in it's bun all day! She was adorable, and did great! The trophy was definitely the highlight for her. She had a great time and want to go every week, even though she was the youngest there by about 4 years. I told her there was no way she had enough in her piggy bank for that!

We have the internet back now, but Seth, Jace and I (Ava was having quality time with my mom) spent a really nice day yesterday with no technology at all, pretty much. No tv, no computers, just hanging out. He hung out in the kitchen with me while I cooked, colored some Pirate maps, played with trucks, and we played with the dogs. It was a lot of fun and really, really relaxing. We didn't even answer the phone when it rang.

Then, I went to bed at 9 pm.

Yes. I'm serious. I don't know the last time I did that. Possibly never. It was completely involuntary...I got the kids into bed, sat down to read, and the next thing I knew, it was the middle of the night. Crazy! Apparently, I needed some sleep.

Oh yeah...and I need some help. Seth's birthday is fast approaching, and I have yet to have an idea of what to do! Suggestions??? Keep in mind we live in Florida, so it is super hot and we're currently in the rainy season. Seth is also NOT walking, so something he can enjoy would be nice. I don't know if I'm up to the insane level of cleaning that would be necessary to have the party at home. Thanks for any tips!

Man Down!

The internet in my house is down, so this will be short and sweet. Hopefully it will be back up and runnng soon and so will I!

Thanks for the comments on my last post. I wasn't aiming for a pity post, actually, although some of you read it that way. But I do think it's important that I be transparent on this blog, that I post when I'm down as well as up, and I hope you guys are ok with that.

Hope everyone is having a great start to their week!

What Should Be Here

What should be here (in place of this post) is pictures of Ava performing in her recital yesterday. She was a beautiful water lily, but I can't find my cord to transfer pictures. Can someone help me with that? Thanks.

So instead of that fun post, you're getting this one.

What should be here (in my living room) is a little boy, going on 2 1/2, but he left us too soon. I don't know what he would be like today, but I hope he would like to cuddle.

What should be here (in my lap) is a 8 1/2 month old, naturally hearing baby. But he was born too soon, and he lost his hearing in the fight for his life. I know he's lucky to hear with his cochlear implants, and I hope someday he'll know how hard we fought for him.

What should be here (sitting beside me) is my husband, but he is working his second job, which helps us pay our bills. I used to work, but all of Seth's therapy made it impossible, so John works to pick up the slack. I hope he knows we miss him when he's working.

What should be here (inside me) is motivation to cook, to clean, to play, but that is sorely lacking right now. I hope my kids understand that I love them more than I could ever put into words, even when the best I can do is play the sleepy dragon in our games.


Nothing's ever the way it should be. Maybe that's because we have the wrong definition for "should."

Going, Going, Gone!

Seth is...getting around, I guess. But it's in an awfully interesting way.

Odds and Ends

Man, what a weekend! Indy is one of the calmest, most well behaved puppies I have had the pleasure to know, but he is a puppy, and I am exhausted mentally from always wondering what he could be getting into. To his credit, he hasn't actually gotten into anything yet, but I keep thinking he will, so I am stressed all the time. He's a really good little boy, though, and has really puzzled into our family in a great way. It's been a long time since we've had a puppy, and it is surprising to me how very much like babies they really are. Our other dog, Ally, tolerates Indy okay but mostly just ignores him, pretty much like she does every one of us. She kind of likes doing her own thing.

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Ava is attending a dance camp this week. They're doing tap, jazz, ballet, hip hop, and lyrical. I thought it would be a fun, cool thing for her to do. She came home today with blisters all over her feet! She's loving it, especially that she's the youngest and gets to hang out with big kids all day, but they're putting those kids to work! She had some very interesting moves to show us when she got home today, including one that looks like she's a DJ rocking out on the turn tables. We'll see how she survives 4 more of these six hour days! She's really getting so big, and as she tells everyone she can get to listen, she's heading off to Kindergarten this year! I thought I'd have a harder time with it, but since her Pre-K year was full day, and she finished up her year doing a great job of reading at a beginner level and is doing other "kindergarten" type things already, I've yet to freak out. Although I do freak out when she tells me to just let her out at the sidewalk and let her go into a house on her own. She's not even FIVE yet! How quickly they want to shake you off...here she is in her first ballet class at the ripe old age of two.

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Speaking of growing up (wait, were we? Well, anyway...) Seth is doing just that. Remember just a few months back when I was lamenting the fact that all he would eat were Ritz Crackers? Well, my latest nickname for him is Garbage Disposal, if that tells you anything! The kid eats anything and everything he can get into his mouth! He'll also eat off a spoon, a skill that Seth refused to learn for a very long time. He eats more food, consisitently, than his siblings. Now if we could just get him to drink from a cup or sippy...he still most definitely prefers his milk straight from the source.

The 4 days we just spent in California with Advanced Bionics, the company that manufactured Seth's implants, was simply amazing. I can't even put into words the way it felt to see how the implants and processors are made (in America, by the way! Yeah!), and how many real people's real hands touch each one, performing a very specific task, on it's way to the eventual recipient. Being able to see the people who quite literally helped give Seth the gift of hearing, who welded, soddered, and literally and built his implants from the ground up, was amazing. In fact, it's way too amazing to describe in a paragraph, and needs its own post.

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Finally, I have been terribly remiss in posting about a lovely lady I was able to meet in Indiana. Unfortunately, due to Seth's insistence on visiting Fort Wayne's finest PICU when we were in town, we didn't get to meet up with some friends we wanted to meet. But one person I just couldn't leave Indiana without finally meeting in person was my friend Mandy. All three kids and I buckled up and headed to a halfway point between our place and hers, (the sweet girl offered to drive all the way to see us, but there was no way I wanted her 7 month pregnant self stuck in a car that long!) and while my kids were a little stir crazy, and at one point I told her that their behavior probably made her want to send her own baby on the way right back...we had a great time, from the minute she walked in and told me that my van doors were wide open (oops!) to the bitter end when we resorted to letting Ava take our picture.

It was so great to be able to sit and talk about the boys, about what it's like to have a baby after you've lost the innocence of thinking everything will always be ok, and what exactly you need for a newborn (my advice? Not much!). The whole, hours long lunch was completely effortless. That day was yet another thing that has convinced me that in the midst of this whole internet thing...where anyone can be anyone they want, whether it's true or not, and the way we all get burned sometimes...there are still real, genuine, caring people out there who are real blessings to know.

Settling In

Our first day with our new pup, who we decided to call Indy, is going swimmingly! He is a sweetheart. He and our other dog, Ally, are getting along great, he is a big cuddle bug with the kids, and he even whined at the door to use the bathroom! Not bad for a first day, huh?

Checking In

It's super late and I'm still all confused by the time difference, but I wanted to pop in and let you get a little sneak peak of what we're doing here in California! We had a fun photo shoot with a lovely photographer named Laurie Sachs today, and she was kind enough to post some shots from our day! Go here to check them out: Laurie Sachs Photography. Pretty cute pictures of this fancy 11 month old, huh?

We're having a great time and today was a really fun, busy day. All the people we've met at Advanced Bionics have been super fun and nice, and way younger than I pictured them! Apparently I don't think I'm old enough to take seriously, because I always assume everyone is way older than I am. =)

I have a lot I want to post about, but I want to devote some time to it, so it may have to wait until we get home. We have a very big day planned tomorrow, starting with breakfast with a very special lady, and then time with Advanced Bionics, followed by a very fun tour of Hollywood with my dear cousin who lives out here. Hopefully my GPS can handle it!

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

Wow, was I ever right!

It's really weird to be sitting outside at 10 pm your local time and have the sun shining down on you. This has been a looong day.

It's been a number of years since I was last in Southern California. Last time I came, my friends and I took the redeye, slept, and then napped throughout the day after we arrived. That was life in college. Sleep, eat, and have a good time. Or at least it was on spring break.

This time, making the flight with an almost eleven month old was very different. Seth is a great baby, and I tried to pack light, but I couldn't forego the diaper bag, a small backpack with toys/food, and Seth's carseat. Yes, I am one of those parents (Or should I say one of those Child Passenger Safety Techs). My kids will not ride without their own airline seats and appropriate restraints. Yes, I know that if the plane goes down we're all goners, but that's not the point. Have you ever been on a plane ride with bad turbulence? I certainly have. Simple turbulence has cost lap babies their lives, believe it or not.

We left early this morning and stopped to get gas on the way. Luckily, I happened to look in my wallet and realize that I didn't have my ID. I started panicking immediately, picturing myself at the DMV begging them to reprint my license so I could make a 10 am flight. I knew it would be ugly. We rushed back home and ransacked my clothes to find my ID (thank goodness!) then headed BACK to the airport, 40 minutes late.

I then headed into the airport, all proud of myself for packing so lightly. I checked our bag, then practically skipped to security. Oh yeah. Security. Take carseat off stroller base. Fold stroller base Remind workers that Seth can't go through the x ray machine. Get patted down for my troubles. receive all of my things, rifled and mixed up, as a reward. Ugh.

Luckily, I figured out a good system for getting on and off the plane. It was super fun. Four times today, I went through this drill. (Well, twice like this, twice in reverse as we deplaned).

1. Lay baby in backpack carrier.
2. Smile and say you have it under control when someone freaks out at the way you pop the baby onto your back.
3. 4. Layer diaper bag and backpack over/under/around your back, since the baby is taking up your back.
5. Push carseat/base (orbit system) down the jetway, then pop carseat off the base, fold base, and proceed to carry carseat onto the plane, inadvertantly hitting the person in front of you over and over  because you apparently have no depth perception, until they literally leap into an empty row to escape you and say "Go ahead, please!"
6. Hit every single seat with the baby's leg/backpack/diaper bag as you go by, significantly slowing everyone down.
7. Find your seat and sigh in relief, then simultaneously crossing fingers that the carseat fits.
8. Install carseat, baby lolling on your back all the while. Swing baby off your back and into the carseat.
9. Sit down and wonder if the airline seats are smaller than the last time you flew.
10. Try to figure out how in the heck to nurse your baby when he can't even sit in your lap without overflowing into neighbors seats. Seriously consider leaning over carseat vertically to nurse.
11. Nurse self consciously because you are 2 inches away from your single, childless seat mate, then get very annoyed for feeling self conscious.
12. Realize that the plane is still on the ground, and cry a little, on the inside.


Finally, we got to Burbank. My bag was the last to come out. My rental took the longest to retrieve. Just after I got in and drove off, my beloved GPS stopped working. The exit for the hotel was closed. The GPS on my phone, which I tried to use as a backup, was possessed by the devil and told me all the wrong things. The hotel had lost our reservation and was booked solid. It took 30 minutes to figure out.

From the time we landed, it took me three hours to step foot in my hotel room, most of which was spent driving aimlessly and listening to Seth miserably whine "Mama!" to me from the back. RIDICULOUS, California!

I'm exhausted. It's not 11:30 pm my time, and I am about to keel over. But I'll tell you what saved the whole day, the whole trip, what made buying a new GPS in an emergency Target trip totally worth it.

Del Taco, that's what.

I have a huge, unhealthy love for that restaurant, and it wasn't until I was driving aimlessly down the highway tonight, convinced my hotel and I were never going to meet, cursing California, that I remembered. Del Taco.  The place I learned that tacos and fries go together in a way I'd never understood before. Del Taco. Del Taco. It brought a smile to my face, and I was able to soldier on through my day. Sitting in my hotel room tonight, eating my Chicken Soft Tacos and Fries made it all worth it.

This is going to be a long day.

Seth and I are leaving momentarily for Burbank, California, the home of Advanced Bionics. (Well, the Burbank area...Valencia to be precise.)

I'm excited, although I was markedly more excited before I remembered about the three hour time difference. Get on a plane at 10:20, get to Burbank at 2:00? Awesome! Totally doable. Then I remembered. 10:20 our time. 2:00 their time. So really, 5:00.

Ugh.

But, assuming we survive and don't get kicked off a plane for nursing, crying, or what have you, as seems to keep happening in the media, we'll be there eventually. Can't wait to see Advanced Bionics!

I think I can, I think I can...

When we were in Chattanooga, we decided to take the kids on a train ride. But this? Was not just any train ride. It was a train ride UP A MOUNTAIN, at some ridiculous angle like 70 degrees. Backwards. So you ride up. Looking DOWN.

Fuh-reaky.

We hopped in, sat down, and took stock. The kids were excited. Nervous. Blase. (Respectively, of course)

The first several hundred feet were fine. going up a little hill, seeing people's houses literally built into the mountain three feet from the train tracks...very cool.

Then is started getting a little steeper, and someone started taking things a little bit more seriously.

By the end of the trip, we were literally facing almost completely down. It felt like we were on a rollercoaster at the crest of the rail, just before they drop you. It was intense.

At the station at the top of Lookout Mountain, you can go out to an overlook and, on a clear day, see 6 states. It was...high. Very high.

The kids had fun exploring and checking out the view, and then we prepared for the trip...back down the mountain...facing forward this time!

You guys are good!

Wow, you guys are good! Or I'm very bad at posting a confusing picture. =) Either way, you're talented!

It is a puppy's nose.

We have a wonderful, long suffering, beautiful mutt (toy rat terrier and english setter) named Ally. I've had her since my 19th birthday (which means we just celebrated 8 years together!), and she has very gracefully put up with four children knocking her right out of the spotlight. She tolerates them, but really loves Seth. The kids have recently become enamored with the idea of her having a friend.

I said no. No way. No how. Puppies are like babies. No!

Then, we went to Indiana for our vacation, where we were immersed in family...and two different parts of our families recently (within the past year) rescued dogs. One Aunt's family rescued a Golden mix named Napoleon, and one Aunt's family rescued a Shih Tzu. They were both adorable and that urge...you know, the  one where suddenly puppy breath doesn't seem so bad? It started to hit me. Then my friend, Jeremy got a new puppy while we were in Indiana. I told him it was going to be the death of me. Ava spent hours rolling around on the floor with his puppy, laughing and shrieking, then got up and very matter of factly told me that when we got back to Florida, we were going to the Pet store right away.

I said no to the pet store idea, right away. I don't like pet store's puppy practices, although I do feel very badly for the pet store's actual puppies. So when we got home, we started perusing the shelters in our area. We came up empty...no dog felt like ours. I was starting to think we should shelve the discussion, even though it would cause Ava to literally pass out from lack of oxygen from the fit she would throw.

Then, we saw him.

He was found abandoned in a bush at three weeks of age and nursed back to health by the staff at the rescue. He is a lab/boxer mix and, in my opinion, completely adorable. He doesn't have a name yet, and I don't know if he ever will, considering all the crazy suggestions the kids are throwing about. But, crazy as it may be, my heart went out to him, and, as Ava said "This is him! This is the right dog to add to our family!" So, here we go!

Want to play a guessing game?

Hint: My mom's only reaction was "You're Crazy!"

Can you guess what this is a picture of?

Cockadoodledoo!

Cock-a-doodle-doo!

That's a typical first word for an almost eleven month old, right?

Don't forget...he's an almost eleven month old that just started hearing a litlte over a month ago.

And, ok...it's not his first word. That was Mama. Loved that.

I guess it's not his second, either. That was ball. Then came bam, bam, bam!

But still. Cock-a-doodle-doo is pretty impressive, even if it did come out sounding similar to "Bah Bah Boooooo!" The inflection was right, and the vowel sounds were good. He had never heard the word before, and he imitated it immediately in therapy the other day.

Color me shocked.

If it's not obvious from the above, Seth is doing well. Really well. Really, really well. So well that his therapists said they've never seen a baby respond so quickly or start giving sounds back so naturally. Who knows what it is...his early age at implantation, going bilateral right away, his therapy, or just Seth himself being awesome?

Well, I know what it is. God has blessed us beyond measure with Seth, and He has blessed Seth beyond measure by giving him all of the above. The chance to be implanted at 8 months. The opportunity to hear bilaterally. Access to great therapists and audiologists. A fun loving, cheerful personality that helps him want to learn to talk and listen. What a great God He is!

Every morning, I wake up excited to see what Seth will learn and do. I love to watch him becoming more aware of his siblings, and his siblings becoming more able to help him play and learn. It is a joy to watch them all play together, and, now more than ever, it is becoming clear to me what an awesome gift Seth was to our family. If he had not lost his hearing, we would have missed out on so much.

Seth makes us stop and think about people who are born with disabilities beyond our imagining. He makes us ache for other parents in circumstances similar to or much worse than ours. He has given me an empathy for other families with challenges I don't know if I've ever had before. As much as I hate to admit it, I was one of those people who saw other families with kids with disabilities or issues and I thought "thank goodness it is them and not me. I could never handle that."

But now I know. You don't handle it. God handles it. You put one foot in front of the other, you try to advocate for your child the best way you can, and you take what you get and make the best of it. When the answers are bad, you make a new gameplan. When they're good, you celebrate like crazy because, truthfully, it is all about the little things.

For us, it's about hearing Mama, Ball, Ba-Ba-Booo! from a little boy who we thought would never hear or speak. It's about seeing him whip his head around when I call his brother, or crack up laughing when he hears me tell him "No." It's about having to shush him in church because he is jabbering so loudly, then almost bursting into joyful tears because I never though I'd get to do that, to tell him to be quiet.

When I realize that all of this...all of it...his premature birth, all his medical issues, his deafness, every step towards his cochlear implants, including meeting many people online who have turned into true and real friends to us, his fundraiser, which went so well only God could have been handling it, his surgery and activation...and now, him being a typical almost 11 month old with age appropriate language development...has all happened in one short year...I can't believe it. I feel like I have lived a lifetime in this year.

What a run on sentence that was. I apologize. I got a little carried away.

Cock-a-doodle-doo!

Home Sweet Home!

We're back! Man, oh man, has it been a busy week or so! We rolled into town late late Tuesday night...we'd planned to stay in a hotel and drive the rest of the way home Wednesday, but when we got to the city our hotel was in, we decided to just keep going...I wanted to get home, and Ava was really looking forward to seeing her dad and sleeping in her own bed.

I have about a thousand pictures to go through, but it was a really great trip. The big kids got to spend lots of time with family, including both of their godmothers, and Seth got loved on by a lot of people. We had a great time in Chattanooga on our way home, and all in all, we had a great time. Oh yeah...except for Seth's little PICU stint. That was no fun at all!

We've had a very busy couple of days since we got home, and one exciting thing that happened was that Seth's gastroenterologist (GI doc...she's in charge of his refux, nutrition, and weight issues) decided that he's doing so well she doesn't need to see him anymore! Well, at least not officially...her son and Seth go to the same therapy center, so she said if I have questions about anything I can always ask her there.

I love subtracting specialists from his list! At this point, Seth is treated by:

Cardiology (For 2 PFO's, a PDA, and slightly prolonged QT length)

ENT (For his tubes and CI's)

Neurology (Preemie issues)

Plus, a Pulmonologist will be coming on board to treat his airway issues that cropped up over our vacation. And, of course, his wonderful pediatrician, audiologists, and his therapists. We see a lot of doctors, but we're so blessed to really get along with them all. However, it's still exciting when one of them thinks Seth is doing well enough to let him go!

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On an unrlated note, aren't these pictures just adorable? This is a friend of the family, Jacob, who has been a great supporter and friend of Seth and all of us through this crazy year.

Hello out there!

When the emails asking if I was still alive started filling my inbox, I figured I should check in.

We're fine! Thanks for asking. =)

We're just soaking up our last few days of family time here in Indiana before we head back to the Sunshine State and all the things on the horizon there. Speaking of, there are a LOT of things on the horizon!

We'll be hanging out here until Monday, when we'll begin our trek back to Florida by way of Tennessee again, so that we can take a day to enjoy Chattanooga. Then, right after we get back in town, we have about a zillion doctor, specialist, and therapy appointments to get Seth back in the loop before we head out for our next exciting adventure, which is happening soon after.

In a couple of weeks, Seth and I will be winging our way to California to visit the Advanced Bionics headquarters. Advanced Bionics is the brand of cochlear implant we used for Seth. They are flying us out to participate in a trial for a new product. I'm super excited!

This summer is shaping up to be full of surprises, but I promise, as soon as my current vacation is over, the blog will no longer be neglected. I have been neglecting it for late night chats at Zesto, all day trips to the zoo,  laying around in the morning with my cousins, watching my kids bond with their extended family, and doing a whole lot of what feels like nothing but is really everything...catching up with family and friends. I think it's worth it!

So if you don't hear from me before, I'll be back in action next week. But who knows...I might find time in between snacking on ice cream and critiquing So You Think You Can Dance...who knows!