Little Kaden and Little Sydney

Happy New Year!

2012-01-14T06:54:00.006-05:00

I admit it, I've been a little neglectful of the blog lately. Daddy's been working long hours so I've been pulling double shifts with the little ones. The good news is that we're all doing well and had a great holiday season. The not-so-good news is . . . on second thought, I'll get to that later.

First things first, Kaden and Sydney are still super-adorable . . .

But that's not likely to change anytime soon so you probably already figured.

Kaden's a really big boy these days. He's been trying to walk everywhere lately. He still needs help from us but he's taken quite a few independent steps and just seems more ready to be on his feet than ever before. Independent walking seems really close and we're extremely excited for him.

We've also recently begun experimenting with glasses. Kaden needs them to correct near-sightedness but so far he hasn't been willing to keep anything on his face. The doctor suggested that I pop out the lenses on a cheap pair of plastic sunglasses to "practice" wearing glasses before we try the real thing. Well, I tried but he only kept them on when I bribed him with the iPad and even then his max time was about two minutes. Within an hour they were broken. I have a feeling this isn't going to be easy . . .

By the way, every once in a while a picture of Kaden really makes me marvel at the awesome lip repair work done by his plastic surgeon at NYU. There's almost no trace of his cleft lip and barely any scar. Well done, Dr. Cutting! Bravo!

As for Little Sydney, she's 10 months old and growing by leaps and bounds. Right now she's determined to master the art of movement. Her moves on the floor often look like a combination of yoga and pilates as she goes from crawling to sitting to crawling in slow motion. She squeals in delight if you run in place behind her saying "I'm gonna get you" and she crawls away as fast as she can.

She's also babbling up a storm and seems to have whole conversations with herself, the TV, Kaden, me, and anyone else who will listen. When I ask her if she wants to play pat-a-cake or help mommy row, row, row the boat she exclaims "Yeeeeaaaahhhh!" How awesome is that?

On a different note, there's not-so-great news of the new year but it has a very nice silver lining. Basically, we've decided to stop having Kaden casted because it didn't appear to be working for him. We're disappointed the process didn't work and more than a bit apprehensive about the treatment options that lay ahead but for now the silver lining is that Kaden is cast-free. He's once again enjoying long, splashy baths and bending at the waist. That's what we're choosing to focus on at the moment -- the decisions and worries of the future can wait -- we've got no-more-cast celebrating to do!

Happy New Year to all! 2012 is going to be great, I can just feel it!

Thanksgiving 2011

2011-11-27T22:31:00.008-05:00

What am I thankful for? Very simple . . .
THIS boy

And THIS girl.

And every single day that I get to see their smiling faces.

Siblings

2011-11-06T23:46:00.008-05:00

These are my two very favorite people. It's taken a while for me to get pictures of them together because big brother was previously unwilling to hang out with little sister long enough for photo-opps, but we're getting there. And, oh, they are an adorable pair!Kaden's getting more comfortable with the concept of sharing. It's a good thing because Sydney's no shrinking violet and she's certainly not about to let anybody play anything without her.

They're even strolling together now. It kind of looks like he's giving her the cold shoulder in the picture below, but I think it was really just the rigidity of his cast making him sit that way.

Speaking of casts, Kaden got his second serial cast of his torso on Halloween. I'm so happy and relieved to report that everything went smoothly this time around. We were in and out of the hospital within a matter of hours and Kaden didn't have any throat or breathing problems coming out of anesthesia. And best of all, he got right back to his old self as soon as we brought him home. Hallelujah!

Since Kaden was in the hospital for much of Halloween, we skipped a lot of the festivities. But we couldn't let Sydney's first Halloween pass without some sort of observance. She helped us give out candy to neighborhood kids in her special Halloween PJs and tutu. My sweet precious girl.

And just before we put these angels to bed earlier tonight Kaden and Sydney discovered the Wizard of Oz. We only watched a small part of it tonight but I would bet we're in for lots more because Kaden loved the songs and Sydney was riveted. Her eyes were positively glued to the screen.

That's all we've got for now. Until next time, WE'RE OFF to see the wizard, the wonderful wizard of Oz.

Back on Top!

2011-09-25T21:18:00.010-04:00

I'm so happy to report that Kaden's almost completely back to full pre-cast mobility. After weeks of struggling and playing flat on the floor, he woke up one morning with a determined look in his eyes. I took the photo above later that night, about three weeks ago, when he picked himself up to play with a favorite old toy. The smile speaks for itself -- he was so happy and proud to be vertical again. He's been getting stronger ever since. (Well, except for a scary little bout of croup that sent us to the hospital a few days ago, but that's passing now too, thank goodness!)

He's been working very hard in speech therapy and has begun attempting to sign things like "more" and "all done." Check out how straight his back is in the cast and how straight he's sitting in that chair! Yes, casting does have a bright side.
The iPad is still his favorite possession and I hate to admit it but he got more than his fair share of iPad time when he wasn't moving around so well. Here he is playing with it in his new bean bag chair.

You can't tell from the pictures but he gets a death grip on that thing and it's almost impossible to pry it out of his hands. My skinny boy becomes the Incredible Hulk when someone tries to take away his iPad. It's really cute and funny in a we-seriously-need-to-curtail-this-iPad-use kind of way.

And how's our little girl doing?

At her recent 6 month well-baby visit to the pediatrician, she measured well above the 50th percentile for both length and weight. She's a non-stop babbler who can (and often does) say "da-da-da" all day long.
Without a doubt, my favorite Sydney quality so far is her easy smile. She's just so happy and eager to show it that just about anything anybody does can bring out a smile or, if she's really loving it, a hearty laugh. No matter how hard or gloomy the day has been, she finds the happy and makes it better.

So, that's the update. We're back on top and planning to stay.

Into the Woods . . .

2011-08-21T10:18:00.042-04:00

"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach . . . I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, to reduce it to its lowest terms, and, if it proved to be mean, why then to get the whole and genuine meanness of it, and publish its meanness to the world; or if it were sublime to know it by experience, and be able to give a true account of it in my next excursion." -Henry David Thoreau, from Walden

This is a hard post to write. Until now, I've consciously decided to devote this space to documenting the sublime: the smiles and triumphs and joys of our lives. I've trained my mind to focus on the beauty that comes with raising our children and watching the story of our family unfold. I've glossed over the hard because, well, that's stuff I don't care to remember once these precious years have passed. The meanness of life has always lurked in the shadows, as it does for everyone in one way or another, but it's never defined us. It's not our story.

But life is complicated and sometimes the hard stuff is so game-changing that glossing over it would be dishonest. Sometimes the only thing you can do is surrender, survey what's been damaged or lost and figure a new path forward. That's where we are today -- past surrender, surveying the damage and taking our first uncertain steps down a new road.

Okay, so what am I talking about? Our precious 3 year-old little Kaden was casted for progressive infantile scoliosis on Friday, August 12th and it's been really hard. Heartbreakingly hard. For everyone. Especially him. But this little boy is amazing and his spirit is mighty and simply will not be crushed, which makes me happy and hopeful at the same time that it makes me sad to know that quality was born of pain and necessity. He is my hero, an absolute giant soul, and I'm so proud to be his mother.

To backtrack a little, I've mentioned here before that Kaden has progressive infantile scoliosis, hypotonia and global developmental delays. I've not mentioned here before that Kaden remains completely non-verbal and is believed by many of his doctors and therapists to have a sensory processing disorder that may or may not be related to an autism-spectrum disorder (ASD). The long and the short of it is that he's had to work extremely hard for every inch of everything when it's come to his development. We've had daily therapy since he was less than a year old: PT, OT, ST, special instruction, craniosacral, you name it and he's done it.

Unfortunately, we found out in April that his scoliosis had once again progressed. Left untreated, progressive infantile scoliosis can compromise heart and lung function and even lead to death. Obviously, doing nothing was not an option. After taking him to another city for a second opinion from an orthopedist on the cutting edge of infantile scoliosis, we decided to begin serial casting of his spine in an effort to regress the curve and, hopefully, avoid or delay dozens of invasive surgeries throughout his childhood and adolescence. Though serial casting, which requires a non-invasive surgical procedure every 2-3 months to adjust his spine and apply a new cast, is not an easy process, it's definitely the lesser evil of all the options available at this point.

We tried everything we could to prepare Kaden for his first casting but I'd be lying if I said that any of us were totally prepared. It's just one of those things -- you can't really know how it's going to go until you do it. We'd seen YouTube videos of other kids in casts who were up and walking within 24 hours, smiling and laughing as if nothing had changed and I guess it was sort of appealing to think things might play out that way for us even though deep down we feared it wouldn't be that simple. And nope, of course, it wasn't.

The first few hours after his casting were awful but not really because of the cast. Kaden had swelling in his throat from being intubated under anesthesia and the restriction from the swelling caused him to panic and hyperventilate. After a few scary moments with doctors and nurses hovering to administer a nebulizer and steroids, Kaden's breathing stabilized and he went into a deep and peaceful sleep.

Despite my relief that he was stable and asleep, my own anxiety began to shift into overdrive. See, I'd lifted Kaden out of his bed when they first brought him out and had felt the weight and stiffness of the cast. How on earth was my baby going to move in that albatross? And how was he going to react once he was coherent enough to understand his new, very different situation? We waited and worried at his bedside for hours. As expected, Kaden was absolutely miserable when he awoke. He refused to eat and laid motionless in bed while his eyes dripped with the biggest, saltiest tears I have ever seen.

Kaden's cast begins immediately under his arms and goes down to about an inch above his groin so he is no longer able to bend at the waist. It's very tight and anchored to his hips, sort of like a corset, which makes diaper changes messy and unpleasant for everyone. In those first hours after surgery it felt SO heavy (we've since learned that it takes 24-48 hours for the plaster to dry completely, and that it feels much lighter once fully dry) and our skinny, exhausted and petrified little boy seemed convinced that he would never move again.

The hospital would only allow one parent to stay at his bedside overnight so I sat alone with him in the dark as he drifted in and out of sleep. Late in the evening, Kaden held my hand and looked at me with big soulful eyes that said "Mommy, I can't move. I'm so scared and I don't understand."

I tried to reassure him. I told him I knew he was scared and I knew it was hard but that he was going to be okay. I told him that he needed to eat and sleep and build up his strength to get moving again and that daddy and I would be there every step of the way. I stroked his hair and kissed his cheeks and read him books until he fell asleep. And once I was sure he was in a deep deep sleep I went to the bathroom and sobbed the kind of gut wrenching sobs that only come a few times in a lifetime.

It's been a week since we left the hospital and Kaden has already made dramatic improvement. We saw his physical therapist everyday last week and he's slowly re-learning how to crawl and sit up on his own. It's going to be a long and difficult road but, as I mentioned earlier, this boy has a mighty mighty spirit and refuses to let this obstacle defeat him. My heart swells with pride whenever I see him get up on his elbows or pick up his tush to move across the floor. He smiles every time he does something new. My baby is awesome.

So, here we go, into the woods and back up a mountain we've already climbed to slay a dragon we thought was long dead.

Wish us luck . . .

Summer 2011 Update

2011-07-29T00:45:00.034-04:00

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It's been a busy summer full of sun and smiles. As usual, I'm exhausted from trying to keep up with my two exuberant little angels.

For Kaden, this will go down as the summer of the iPad. It's an amazing tool for special needs kids and man, oh, man does he love it! We were passing an Apple store recently and decided not to take Kaden inside -- his eyes would have probably popped clean out of his head had he seen a whole store full of iPhones and iPads. Alas, my sweet boy, you'll get the joy of discovering that little treasure some other day in the future.
Kaden's other great passion this summer is books. He's growing a nice collection, probably about 25 titles. So far they're mostly Sandra Boynton books but he's beginning to step a few toes into the wonderful world of Dr. Seuss. It's so adorable the way he hands me the books to read and gives me the same coy "just this one" smile even when it's the millionth time he's handed me a book that day. And I think he's got half of them memorized! His latest trick is to bring books to me when I have my hands full feeding Sydney and when I tell him I can't read it because I'm feeding the baby he spreads the book out in front of me and turns the pages (appropriately) as I recite the words from memory. He's so totally awesome and he fills my heart with joy every single day.
Here he is perusing some books . . .
Posing with his fave new toy: a basketball hoop . . .

Working hard in speech therapy . . . (I snapped this pic through an observation window so the quality isn't the best)
And playing at the park with Daddy.

For Sydney, this will go down as a summer of many firsts, like rolling over. I didn't manage to get a picture of her first rolls but I did catch her trying to escape her crib. I think it's time I put on the bumper.

Her latest new friend is Sophie, a rubber giraffe that goes everywhere with her. Really, Sydney cries for Sophie if she's not around. It's very cute. Soon I'm gonna have to teach her that it's not okay to bite your friends' ears or legs but, for now, well, Sophie doesn't mind . . .

Sydney at 4 months old

2011-07-07T17:08:00.011-04:00

The days have all gone by so quickly that it's hard to believe our little girl is already 4 months old. But on another level, it seems she's been a part of our family forever . . .

This little girl's got A LOT of personality. She loves the camera. And trying to roll all over the floor. And smiling and blowing bubbles and lounging around in her pajamas.

And, oh yes, she LOVES her brother! She watches everything he does and just cannot wait to play with him.

As you can see, there's been an explosion of cuteness around here and I'm totally loving it.

Happy Birthday, Angel!

2011-06-21T21:11:00.003-04:00

It's hard to believe our little boy is already 3-years old. Yesterday was Kaden's big day! It really chokes me up to reflect on how much Kaden's grown and how far he's come in the past year. Here he is smiling for the camera as mommy and daddy sing Happy Birthday.

This year he liked balloons but pretty much refused to wear his birthday hat -- oh well, at least we managed to get him to wear this cute "It's my Birthday" ribbon.
Birthday cake still isn't his favorite. And, apparently, he really doesn't like to be photographed eating.

No matter how many new toys he gets, it's simple pleasures like riding around in a plastic container and reading a book with daddy that really make this big boy happy.

We had a great day celebrating our precious little man. I'm so glad I get to be his mama!

HAPPY HAPPY! Here Comes Kaden's 3rd Birthday!

2011-06-20T00:25:00.005-04:00

The big day is here - Kaden's 3 years old! We're all set and ready to greet him with balloons as soon as he wakes up . . .

Pictures of the birthday boy coming soon!

Almost-Birthday Fun at the Beach

2011-06-11T08:52:00.009-04:00

Kaden is almost 3 years old. Although his actual birthday is still a few days away, we kicked off his birthday month with a family trip to the beach.Kaden is a huge fan of the ocean. He was super excited to kick around in the surf with daddy even though the water is still freezing cold this time of year.

He tries to grab for the water as it rolls away from his feet. So adorable.

He played in the sand with daddy . . .

And then sang songs and shared giggles with mommy.

And how did Sydney enjoy her first trip to the beach?

I think its safe to say the sand and surf really tire her out.

We had a great time and can't wait to do it again next year!

Beach Preview

2011-06-08T16:56:00.004-04:00

We discovered last summer that Kaden's a junior beach bum so we established a family tradition of celebrating his birthday (coming soon!) with a trip to the beach. I'm still unpacking suitcases and pouring through photos so this is just a preview . . .

Stay tuned!

A Beautiful Day

2011-05-23T01:18:00.018-04:00

How could a day that began like this be anything other than beautiful?

Despite the gorgeous weather, my two guys were sleepyheads this morning. As usual, we had a busy schedule so when 8:30 am rolled around and I realized Kaden had no intention of waking up, I put him in bed with daddy with an instruction for daddy to get him up. Five minutes later I went back into the bedroom and found the two of them sharing a cozy Sunday morning snuggle. Good morning, indeed!

As we all know, Kaden LOVES the park. So we headed there for a little playtime before our boring Sunday chores.

He still loves playing in the grass. Such a big boy!

And what did Sydney do? Well, mostly she slept. Here's a time lapse photo spread of her waking up-

Sydney says:
It's so nice sleeping out here with the breeze.

I AM getting a little hungry though.

What time - did I forget my watch again? Has it been 4 hours yet?

Well, it IS a great day. I guess I can just relax and enjoy the park for awhile.

No, seriously folks, let's get this bottle thing going.

So cute!

Precious Little Girl

2011-05-13T23:36:00.005-04:00

This little face just melts me . .

Tummy time is not her favorite but she's getting better at it every day

She had a run-in with a bumblebee the other day. Fortunately, I got pictures . . .

Whatcha lookin' at, bumblebee? Why, I oughtta!

Springtime Update

2011-05-05T20:51:00.008-04:00

So, I'm gonna get the hard stuff out of the way first . . .

Kaden went to the orthopedic doctor for his six month follow-up last week and we got news we've long been dreading: it appears his scoliosis has progressed. The bright side is that there's a process available for treatment that should be effective and get his spine fairly straightened out by the time he's an adult. The not-so-bright side is that we're looking at a long and sometimes painful process. We're trying with all our might to focus on the bright side. Kaden is a strong and healthy boy and we'll be there to help him through every step of the process. I think that's all I have to say on that topic for now. Here's a picture of Kaden waiting for the doctor to see him. He was playing with daddy's iPhone, as usual, and using an app called "Tap to Talk" that is designed for speech delayed kids like Kaden. The app has pre-set words and phrases that it "says" when Kaden touches them. Well, the minute the doctor walked into the room and began to examine him, Kaden touched the phrase "I don't like this." The doctor laughed which made Kaden laugh and touch it again. He did it two or three times. A welcome bit of levity for a tough appointment.

Kaden is getting bigger and more handsome every single day. And he's almost three years old! I can't believe it.

In sibling news, Kaden is slowly warming up to the role of big brother. I wouldn't call them "best friends" just yet but I think we're headed in that direction . . .

And the amazing Miss Sydney is now two months old and loves to do three things: sleep, eat and SMILE! She's a morning person who wakes up every day at around 7 am smiling ear-to-ear. What a lovely way to start the day!

Did I mention how adorable she is when she sleeps? Off the charts . . .

HAPPY!!! And VERY, VERY tired!

2011-04-03T01:02:00.014-04:00

Beautiful little Sydney was born almost 5 weeks ago. Like her brother, she is an angel and absolutely perfect in every way. As you might expect, there's very little sleep going on in our house these days. Sydney is an enthusiastic eater who demands to be fed every 2-3 hours. She loves to be held and has tons of personality for such a wee little girl. Simply adorable. And exhausting. Since the circuits in my sleep deprived brain are still not firing as they should, this post will be light on text and heavy on pictures.

Sydney's favorite pose: sleeping on mommy or daddy

She already has a friend

Have you ever seen such pouty lips?

And how has Kaden taken to big brotherhood? Well, let's just say it's a work in progress. He's not yet sure what to make of Sydney and seems to get a little upset about sharing the spotlight but he's coming around.

So long as we carve out extra special time just for him, he's happy, especially since playground season has just about returned.

One great thing so far is that he knows he's the big boy and not the baby and that has sparked lots of developmental progress.

His amazingly joyful spirit makes even the most exhausting day wonderful.

We are so lucky . . .

My Two Valentines

2011-02-14T01:46:00.012-05:00

This Valentines Day I feel like the luckiest lady in the world because I have two amazing guys in my life. And though I'm really looking forward to welcoming an equally awesome and amazing little girl into our family in a few short weeks, Kaden and his daddy will always, always, always be my two best guys. Happy Valentine's Day! I love you both with all my heart.

The past few months have been great with only a few exceptions. Kaden managed to catch his second illness of the winter flu season and it took us to a milestone we never really wanted to reach -- our first trip to the ER. Thankfully, it wasn't anything serious, just slight dehydration from a nasty GI bug, but it's certainly not something any of us want to experience again anytime soon.

Here's a picture of our queasy little one in between teaspoons of Pedialyte.

As you can see, he's totally adorable even when he's sick. That's definitely not a trait he gets from me. Fortunately, he's now fully recovered and is pretty much back to his happy, mischievous self.

Kaden and his daddy are already getting excited for baseball season. Here's a shot of him listening to daddy talk about pitchers and catchers reporting to training camp. I think it's time Kaden got his own Yankees cap because daddy's is still just a little too big . . . on second thought, he probably wouldn't keep it on his head if he didn't think it belonged to daddy.

We're all eagerly awaiting the arrival of Kaden's little sister and though I'm not so sure he understands what it all means, he certainly has noticed the recent infiltration of pink clothes, blankets and gear in his bedroom. He thoughtfully examines new items as they enter his space so bringing his sister home for the first time should be interesting. Stay tuned for more on that in a few weeks . . .

Finally, here are a few random shots of our handsome boy right before nap time. Throughout my pregnancy I've needed an afternoon nap every bit as much as Kaden (sometimes more) and I've enjoyed cuddling up on the couch with him for a cozy snooze. For the past few months it's been my favorite part of the day.

Well, I guess all good things really do come to an end because Kaden's decided he's too much of a big boy to cuddle that way and now prefers to go to sleep laying down on his own. I know it's a good thing that he's maturing and wanting to put himself to sleep but I already miss those cuddles. A lot. Good thing I took lots of pictures.

Hurray! A New Post!

2010-12-19T01:00:00.016-05:00

It's taken nearly two months for me to create a new post so I guess I'm going to have to make it a good one. I'll do my best.

Since I know Kaden has lots of fans who rarely get to hang out with him in person, I promise to include lots of pictures. The first shot was taken over the summer so it's not terribly recent but it's one of my absolute favorite pictures of Kaden. He just looks so grown up, you know, like he's pondering really deep philosophical questions while picking the grass.

Even though he's not yet talking, his face and eyes are incredibly expressive. He tends to get his point across without saying a word. That skill may not appear on any milestone chart but I happen to think it's pretty damn impressive. And adorable.

The big news around here these days is that Kaden is going to be a big brother. We're expecting Kaden's little sister to arrive in the first week of March. I'm 7 months pregnant and doing extremely well, though exhausted and increasingly uncomfortable in my rapidly expanding body. Kaden thinks my belly is quite funny. He giggles every time I put his hand on it to feel his sister kick. Here's a cute shot of him smiling as he reaches out for a rub.

Kaden continues to work incredibly hard every day at various therapies and is extremely close to walking on his own. He's taken a few independent steps here and there but balance is still a bit of an issue, which is not surprising given the nearly 40 degree curve in his spine. Here's a few shots of him strutting his stuff with the help of a walker during a recent physical therapy session.

About two months ago we began a preschool class on Wednesday mornings where Kaden (and I) do crafts, participate in circle time (which includes singing and the teacher reading books), and snack time. Kaden liked the singing and book reading right away but he's still warming up to craft time and snack time. So far it's been a really good experience and a great transition to preschool, which Kaden may start attending a few days a week in September.

Kaden has also been doing a fairly intensive new speech therapy program twice a week. Despite a pretty rocky start that included tantrums and a series of really clever avoidance techniques that Kaden devised to avoid participating in the sessions, he seems to be getting used to his therapist and is even (dare I say it?) trying to participate and make new sounds. It's a lot of work for him but I think he's starting to understand that it will help him so he's becoming more receptive. And that's a start, so we'll take it.

The only down side to preschool and all the new activities Kaden has been doing recently is that he's had the sniffles off and on several times already this season and had a really terrible cold that lasted the entire week of Thanksgiving. Needless to say, it wasn't the greatest holiday but Kaden bounced back and returned to his old charming ways by the following week.

So that's about it for us. We're hoping for a healthy and laid back Christmas and New Year.

Happy holidays to you!

Good News . . .

2010-10-29T12:06:00.003-04:00

We recently had our 6 month follow up appointment with Kaden's orthopedic surgeon and, after a very tense wait for x-ray results, got the great news that Kaden's scoliosis has not progressed! A year ago the doctor gave us a very grim outlook -- she said it's extremely unlikely that a curve like Kaden's will resolve on its own, that such curves almost never stay the same as the spine grows and, basically, that it's virtually guaranteed his curve will do nothing but progress and require surgical intervention. Based upon her measurements at the time, Kaden was only 3-5 degrees away from needing to be fitted for a brace or a cast. And, oh yes, the best part was that she said there was really nothing we could do about it. I walked out of the appointment in tears and wondering why some doctors seem so determined to make us feel helpless. Maybe they think it's comforting because it lets us off the hook. It's not and it doesn't.

After that appointment I began researching alternative therapies. I managed to find an amazing online support group for parents of developmentally delayed children and learned about ABM (Anat Baniel Method) therapy. After reading numerous impressive testimonials, including one about a child with infantile scoliosis whose curve stopped progressing after ABM therapy, we decided to give it a shot for Kaden.

ABM is fairly intensive therapy. When we began, Kaden had 4 one-hour appointments per week. The main thing that kept us going back is that Kaden was making tremendous progress with each visit. There was no way to tell if it was stopping or slowing the curve in his spine, but it was clear that he was getting stronger and using his body much more effectively than he ever had before.

The ABM therapist strongly suggested that we take Kaden to a doctor of osteopathy for craniosacral manipulation. We'd never heard of it, but we were open to the idea. I have to admit that to this day I don't really understand what it is or how it works, it looks like a deep tissue massage of the back neck and head, but Kaden responded to it immediately. Not only did it significantly reduce the rigidity in his back and neck, it seemed to just light him up. He became so much more alert and attentive. The DO and ABM therapist speculate that by loosening up his trunk, neck and spine, Kaden has more energy to focus his attention on things other than simply holding himself up. I may never know exactly what happened but I can tell you that Kaden has really blossomed and it seems to me to be a direct result of his therapies.

So, take that, doctors who say there is nothing we can do about things! I don't have a crystal ball (oh, how I wish I did!) so I don't know whether the curve in Kaden's spine will ultimately progress and require surgery but I can tell you that we're doing everything we can to avoid it. So far so good, and that's good news!

Because I just can't resist, here are a few recent pics of our handsome boy . . .

He just loves to watch TV in bed

He's never let us put sunglasses on him, at least not until we tried giving him daddy's sunglasses

His favorite activity these days is going round and round this toy, hard at work on each little part of it

This Little Boy Loves the Fall!

2010-10-09T22:14:00.007-04:00

Kaden took his very first trip to a pumpkin patch today. Although it was an unseasonably warm and blindingly sunny day, Kaden got right into the Halloween spirit. He picked out the perfect pumpkin and giggled his way through his first hayride.

After a long hot summer of sharing local parks with older kids on summer break from school, Kaden seems blissfully happy to have the now empty parks virtually all to himself again. I think slides are still his favorite but swings are definitely starting to grow on him . . .

And, well, as usual Kaden has lots of doctor and therapy appointments to keep him busy nearly every day of the week. He's seizing the opportunity to show off all his new Fall clothes.

Here's a picture of him waiting to see his opthamologist. The glasses the doctor is planning to prescribe (in a few months, when he's a little more mature) will really complete the look, don't you think?

Being a Big Boy . . .

2010-08-22T22:16:00.009-04:00

Kaden is a "Big Boy" now. He's doing "Big Boy" things like pretending to drive the car . . .
and sliding down the slide all by himself (or at least he will when he stops being afraid to let go) . . .

and sitting in his very own chair to watch his favorite TV show (these days it's Elmo and Sesame Street) . . .

and laughing and smiling and filling his mommy's heart with joy every single day.

We're having a great summer!

Lost and Found

2010-06-29T17:51:00.006-04:00

Isn't it funny how every once in awhile something happens that restores your faith in the universe? It happened to me today and I wanted to share.

Sometime during our fabulous beach vacation last week, I lost my wallet. A frustrating ending to a very good trip. I was annoyed with myself for being so careless. And what if it was actually stolen and someone was using my driver's license to steal my identity? I checked with the local police, beach patrol, hotel staff, store clerks, but nobody had found my wallet. Ugghhh! I resigned myself to an unpleasant trip to the DMV and learning to live with the nagging fear that someone else had my license.

That all changed when I opened the mailbox today to find a package from the U.S. Postal Service containing my wallet. Apparently, whoever found my wallet dropped it in a mailbox and the USPS took it from there. Though it was missing some cash (I never claimed it was a perfect world!) everything else was completely intact, including my faith in humanity and the universe.

The world is good and there's always hope. Thank you, universe, for reminding me of that today!

Family Time at the Beach

2010-06-27T13:11:00.016-04:00

Kaden loves to spend family time at the beach. The best part is that his smiles and giggles are totally contagious. See for yourself . . .

Not only does Kaden look adorable in madras plaid, he apparently finds it hilarious because he laughed his face off the whole afternoon that he wore it. The pictures of him and me above were taken at a restaurant where I was helping Kaden bang his hands on the table to demand a sippy cup of iced tea, his new favorite drink.

From catching waves to playing in the sand to lounging under a tent with daddy, Kaden thoroughly enjoyed the beach.

And the park that just happened to be a few blocks from our hotel.

I think we may just have ourselves a new family tradition.

Birthday Boy at the Beach

2010-06-25T16:20:00.007-04:00

Kaden's birthday fun continued with a trip to the beach.

Despite the 100 degree heat, we had a blast! More photos of our gorgeous little beach bum coming soon.

Happy Birthday, Kaden!

2010-06-20T20:14:00.007-04:00

We learned a few new things about Kaden today. He's not crazy about balloons or cake (even cupcakes!!) but he absolutely loves presents. And singing. And knowing it's his special day.

Happy birthday, little one.

Psssttt! It's Kaden's Birthday!

2010-06-20T16:05:00.005-04:00

And we're about to have a Yo Gabba Gabba themed cupcake party! Pics of the birthday (big) boy coming soon . . .

This Boy is Almost 2 Years Old!

2010-06-10T14:36:00.011-04:00

Where does the time go? From adorable baby to adorable toddler in barely two bats of an eye. My stars, that was FAST . . .
It's been a few weeks since my last post. In the meantime, Kaden and I tagged along on a business trip to Miami with daddy but we both had terrible relapses of the colds we got about a month ago. I was planning to post pictures of Kaden relaxing on South Beach but unfortunately our colds kept us from doing much swimming or sunbathing on this trip.

Kaden did get to indulge in one of his all-time favorite activities; he sprawled out for many a cozy afternoon nap in our very large hotel bed.

It always amazes me how one little person can take up so much space.

I also discovered that he's quite the little politico -- he reviewed the morning paper every single day. He may not say much but he's definitely taking it all in. Smarty pants.

Next stop, Kaden's birthday!

I can't wait!

Happy Days

2010-05-19T22:44:00.013-04:00

The weather last weekend was beautiful! Since Kaden finally seemed fully recovered from his little Spring cold, we headed out to a new park for a little fun and exploration. As you can see, Kaden had a great time.

Back at home on the ranch . . . Kaden has NOT forgotten bubbles.

He has a toy chest in the corner of our livingroom that he routinely plunders in search of just the right toy. One of these days he's gonna fall in. Head first. He'd probably be in heaven . . .

Bubbles!

2010-05-14T20:30:00.006-04:00

Kaden's new favorite thing? BUBBLES! He prefers to bask in them rather than pop them. Since I think it's the cutest thing in the world our living room is quickly becoming a bubble factory.

Unfortunately, Kaden and I have been battling colds for the past week so he hasn't been operating at 100 percent but he's not one to let a silly little cold keep him down. He's been all over the house, opening and closing every door and cabinet. He gets a real kick out of it and gives the most adorable giggle every time you say "open" or "close".

In spite of his cold, Kaden has been doing really well. He's really coming into himself and seeming more like a big boy everyday. And though I'm still a bit sick myself, I'm managing to savor and enjoy every moment of this precious time with my amazing little man.

Bubbles, anyone?

Walking on Sunshine!

2010-05-01T18:31:00.003-04:00

April was a great month. It was filled to the brim with therapies and doctor appointments (sometimes two per day) but we also got in lots of sunshine, smiles and progress.

Kaden and his daddy gave me a Flip Camcorder for my birthday. I'm still learning how to use it but if I've done everything right you should be able to see my little cutie pie practice his walk during PT last week. He's worked so hard lately and I just couldn't be any more proud of him.

A few other highlights from April:

(1) Kaden gained a whole pound in six weeks. This might not seem like rapid weight gain to most but, believe me, for Kaden it's warp speed. He actually seems to be enjoying food a little more these days. He went to town on a baked potato and sliced avocado the other day and I've even managed to sneak some (vegetarian) baked beans into him. Hallelujah!

(2) Kaden's scoliosis has not progressed at all in the past 5 months. The orthopedic surgeon who follows him was extremely pleased and told us that he doesn't need a follow up x-ray for another 6 months. Double Hallelujah!

I'm feeling a great summer coming . . .

It's Official . . .

2010-04-18T19:43:00.010-04:00

Kaden loves the Springtime! We found this huge park on the Potomac River that has several hundred acres of riverside campground with picnic shelters, barbecue pits and playgrounds. Kaden's new favorite thing to do? I'll let the pictures speak for themselves . . .

We may have created a monster, albeit an adorable one. Kaden now kicks and screams when we try to put him in the car to leave the park. Methinks I know where we'll be spending most of our time for the next 5 months or so. And that is totally okay with me ;o)

Fun at the Park

2010-04-12T12:02:00.012-04:00

Kaden loves to play. That is just a happy fact of our daily lives. Add beautiful weather and a big open park with lots of grass and we've got a recipe for smiles and fun. This past weekend we made ourselves a double batch!
The emergence of Spring has beautifully coincided with (and perhaps contributed to) a developmental explosion in our precious boy. On Friday night he actually crawled up four stairs with absolutely no help from mommy or daddy! He's been crawling around the living room for months and, lately, been looking up the staircase (which has about twenty steps) but always sort of shuffled past it, apparently intimidated. Not on Friday. On Friday night he went for it. After four exhausting steps he turned around and beamed at my husband and me, so proud of his accomplishment. We both exhaled, relaxed all the muscles that had tightened in fear as we spotted him up those four steps, and cheered him as a conquering hero. It was awesome.

Kaden has also been doing a lot of experimenting with standing and trying to balance himself against walls and furniture. You can see in his eyes that his first unassisted steps are coming soon. Go, Kadie, go go go!

Late Night Shenanigans

2010-03-30T02:43:00.005-04:00

Is there anything cuter than a toddler in pajamas? My absolute favorite time is right after Kaden's bath, when his hair is still wet and slicked to his head, when he tries to get in one last play with every one of his toys . . . including the blinds.

He is sooooo close to standing on his own. Been practicing every night and can actually do it for about 5 seconds at a time.

And oh yes, Kaden and Daddy are very ready for baseball season. Kaden gets a big smile anytime anyone says "baseball."

Daddy's cap and puppy pajamas -- could the Yankees possibly have a cuter fan?

Kaden is . . .

2010-03-26T16:09:00.010-04:00

Absolutely perfect. The sweetest, strongest and most beautiful person I have ever known. And, lately, a whole barrel of laughs.

I find myself noting, once again, that it's been a long time since my last post. I could say we've been busy and it would even be true but that's probably not the real reason my blog entries have become so sparse. If I'm being honest (and why not be honest, right?), I've been avoiding the blog because things have been . . . well, hard. Things with Kaden are more, um, involved, than we initially suspected. What I mean by all that is, as doctors warned us all along, it now appears very likely that Kaden's cleft lip and palate were the result of a more global genetic/chromosomal anomaly.

To say that I've struggled with this would be an understatement. It's hard to admit because I so want to be strong at all times. It's tough-girl bravado. A defense mechanism. But when it comes to my child, my wonderful, beautiful, perfect boy . . . I am utterly defenseless. And sometimes scared and sad.

That's not to say that Kaden isn't doing well. He's happy and healthy and we're extremely proud of him. He brings endless joy to our lives.

Maybe the best way to explain things is to say that Kaden is "unique." That's the term his neurologist used and it's really the only one that truly fits. There seems to be agreement amongst his (many) doctors that Kaden has an underlying genetic/chromosomal issue that caused the clefting as well as a neuro-muscular condition that's driving his scoliosis, feeding issues and other delays. Kaden is twenty one months old and not yet walking unassisted or talking. He doesn't point to objects, waive "bye-bye" or clap. He is, however, very adaptive and uses his hands and feet in more sophisticated ways than his therapists expect given his delays. He's also very loving and expressive with all kinds of non-verbal communication. He has his own way of doing just about everything and, slowly but surely, he continues to make progress every day.

Kaden's scheduled to meet with a geneticist in a few weeks. It took 8 long months to get an appointment and we've been warned of the strong possibility that we may never get a formal diagnosis. Basically, there's still a lot that scientists and doctors don't know about these things. It could literally be something as simple as a genetic mutation that changes a protein or an enzyme in his brain. Unfortunately, science hasn't yet caught on to all such irregularities so it's really a crap shoot as to whether or not the genetic tests will yield any meaningful results.

I think the most frustrating and emotionally challenging part is all the uncertainty. There's nobody who can tell me what to expect or whether Kaden will have long term disabilities. It's still too early to know such things. On good days, that allows me to have unbridled optimism. On bad days, well, the opposite. But the good days really outnumber the bad days at this point so at least I feel like I'm winning that battle ;o)

So, there it is. That's what I haven't been writing for the past few months. It feels good to finally get it out.

Until next time, here are a few recent pics of my adorable little boy. Did I mention how happy and cuddly he is . . . ?

Snow Vacation!

2010-02-12T14:30:00.025-05:00

We've had to endure mountains of snow in the DC area over the past few weeks, but there's been one very big bright side -- lots of unplanned family time!

Kaden likes to watch the snow but doesn't seem to like the feel of it just yet. It's just too cold and wet for his tastes. I guess his first snowball will have to wait until next year.

He is doing very well and has certainly enjoyed all the family time. He's growing like a weed and is doing new things every day.

Kaden is absolutely the sweetest and most loving boy in the world. Life is good.

The Long Overdue Update

2009-12-11T01:30:00.002-05:00

It's been so long since my last post that I hardly know where to begin . . .

First, and most importantly, Kaden is an extremely charming, happy and adorable 17 month old. He LOVES to laugh and play more than anyone I've ever known and is slowly showing me the ropes of stay-at-home motherhood.

Kaden's palate was repaired by Dr. Court Cutting at NYU back in June. Of course there were complications that kept us in the hospital longer than expected. In short, Kaden's body doesn't like antibiotics because they give him antibiotic induced colitis, a condition that would bring a grown man to his knees. So yes, we had another intense hospital stay. Thankfully, Kaden made it through and once again proved to all of us that he's the toughest little guy in the world.

Unfortunately, Kaden's progress in other areas has been quite a bit slower than we hoped. He's not yet walking but he recently started standing up on his own (holding on to furniture) and loves to be on his feet. It appeared at our last appointment with the orthopedic surgeon that his scoliosis is progressing and it's possible he'll need a cast or brace in the near future. Although I sincerely dread the thought of putting him through another drawn out and possibly painful medical process, we are of course prepared to do whatever is necessary.

He's getting weekly physical therapy as well as speech and feeding therapy -- still has absolutely no appetite -- and will likely start occupational therapy in the near future. I would be lying if I said that I don't worry about his delays, but he's shown me so many times that he's a lionhearted fighter. I believe with every fiber of my being that he's going to be okay. He's happy and healthy and that's more important than anything else in the world.

Since it seems to take me months to compose new posts (how is it that I have less time now than when I had a job!!!???), HAPPY HOLIDAYS!

Changes. Fears. Etc.

2009-06-05T01:51:00.003-04:00

It's been far too long since I last updated this blog but I have a good excuse -- we've had several major life changes in the past 2 months. A new job for my husband, a move to a new city for all of us, and a new role for me. Yes, they said it would never happen (well, mostly I said it would never happen) but here I am, a stay at home mom. Now let's just hope Kaden takes it easy on me. I am new at this, after all.

Now for the hard stuff . . .

Kaden is scheduled for palate repair surgery on June 16th. I took him for all of his pre-op appointments on Monday, no easy task considering that Kaden and I both had colds that felt like the plague and Kaden topped his off with an ear infection. He was unhappy and uncooperative to say the least. He's been taking antibiotics and the consensus is that he'll be fully recovered in plenty of time for the surgery.

For some reason, I find myself filled with even more fear and dread than I did before the lip repair surgery. You'd think I'd be calmer because I now have a better idea of what to expect but it's really quite the opposite. I'm anticipating every agonizing step. It's torture.

Kaden's first birthday will be just 4 days after surgery. Poor little guy will be in arm restraints and probably miserable. It breaks my heart but I suppose we've all got to keep our eyes on the prize --Kaden will be healing and this long arduous chapter of his life will be completed.

Please keep us in your thoughts and, if you're so inclined, pray for a complication free surgery on June 16th and an easy recovery for our sweet little angel.

My How Time Flies . . .

2009-03-24T21:58:00.006-04:00

It's been more than a month since my last post but it feels like just a few short days . . . my gosh, is Kaden's entire babyhood/childhood going to pass this quickly? I wish there was a way to slow it all down, to savor every moment.

Things have been incredibly busy the past few weeks. The good news is that we took Kaden to see an orthopedic surgeon and he said Kaden's scoliosis doesn't appear to be the result of any congenital anomalies. Quite a relief. In fact, the surgeon said it's the type of infantile scoliosis that may even resolve itself over time. Obviously there are no guarantees but we're very glad to know the outlook is good. We'll take that and run with it for now.

Unfortunately, Kaden continues to lag in the terms of upper body development. His first physical therapy appointment is later this week and we're hoping that he'll be able to sit up and crawl very soon. Poor little guy, you can just see in his eyes how much he wants to get moving when he's on the floor for tummy time. I suppose it's his first lesson in patience and perserverance.

I hope to post a little more soon. For now, here are a few more pics of our gorgeous little man.

Kaden at 8 Months Old

2009-02-21T23:06:00.010-05:00

Kaden is now 8 months old. As you can see, he's totally adorable and is healing extremely well from lip repair surgery.

He continues to be a happy and easygoing baby, though from time to time he does show a tendency towards willfulness (he is absolutely his mother's son). Let's just say that Kaden doesn't love being bottle fed formula. We're really looking forward to the day we can retire the Haberman bottle and feed him only solid foods.

We're now about 4 months away from palate repair surgery and facing a few more challenges than initially expected. Unfortunately, Kaden was recently diagnosed with scoliosis of the thoracic spine. Although it's not yet clear what that means for Kaden's long term development, in the short term it's contributed to gross motor delays. He hasn't yet hit milestones like sitting up on his own but the good news is that he'll be receiving regular physical therapy starting in March. With physical therapy and his tough little spirit, we're sure he'll be sitting up and crawling in no time.

The other good news is that, aside from a few stomach woes, Kaden has remained extremely healthy throughout this long cold winter. Thank God!

Prologue to Kaden – Part 5 – Aftermath

2009-01-15T23:12:00.002-05:00

I hope to finish up the “Prologue to Kaden” before time and everyday life dull my memory and make it impossible to accurately capture our pregnancy experience. I also hope to let go of the emotional baggage that I carry from the pregnancy and move forward with my wonderful son and husband. Writing this story and sending it into the ether feels like a good way to, literally and figuratively, release it all.

I have already written about the night my appendix ruptured in the post titled “Prologue to Kaden – Part 4 – Au Revoir Appendix.” In some ways, that was just the beginning. We figured that we’d already endured the hard stuff and the rest of the pregnancy would be drama free. That proved to be very wishful thinking.

Recovery from surgery was harder than anticipated. In addition to severe back pain and very limited mobility in the first two weeks after surgery, I had yet to feel the baby move and was getting more worried every day as good intentioned people asked me over and over, “How’s the baby?” I had no answer for that question. I hoped and prayed that Kaden was okay, but I had no way of knowing for sure. The last ultrasound had been done right after surgery and the doctors said he’d made it through. I was not scheduled for another ultrasound for about 4 weeks (and my doctor did not want to do it earlier), so all I could do was try to heal and hope that he remained okay in my belly.

When the ultrasound day finally arrived my husband and I were nervous and excited. At first there was relief, a strong heartbeat, Kaden was still in there even though I couldn’t feel him. Relief subsided into anxiety as the tech measured and re-measured multiple things: Kaden’s head, abdomen, legs. She asked if we had gotten an amnio. No, I told her nervously, we decided not to have an amnio. She left the room to get the doctor.

The doctor, a woman we had never met before who worked in a group practice with my original OB, told us that Kaden’s estimated fetal weight was in the 7th percentile. This is technically classified as Intrauterine Growth Restriction. Given the presence of cleft lip and palate, she said, this could be a further indication of a more global problem. In other words, she indicated, it was starting to appear more likely that Kaden’s cleft was not an isolated anomaly.

Then, for a reason that I still don’t fully understand, our dialogue with this doctor somehow became contentious. I asked her if it was possible that Kaden’s cleft and small size were not related. Yes, no, maybe, her answer was unclear. Could the fact that I had surgery five months into the pregnancy have caused the IUGR? No, she said. Studies of women who were pregnant during times of famine showed normal fetal growth so there was definitely no correlation in her mind between Kaden’s small size and the ten pounds I’d lost in the weeks following surgery. Not the same thing at all, but okay. She seemed to think we were trying to get her to commit to a diagnosis or a prognosis but we were really just trying to understand and absorb what she was telling us. She asked if we’d had an amnio (couldn’t anyone just read my file before asking me that question for the millionth time!!??). She told us we should reconsider the amnio and come back in two weeks for a follow up ultrasound.

Two weeks later, I was back in the office watching an ultrasound technician refuse to make eye contact with me as she measured and re-measured Kaden’s head, abdominal circumference and legs. Without saying a word to us she called in the doctor. This time, the perinatologist (high risk doctor) on duty for the practice group was the same doctor who had done our original twenty week ultrasound. We knew him, but not very well.

Although I don’t remember everything the doctor said that day, a few things do stand out. He started out by measuring everything again and then turned to me and asked, “Have you had an amnio?” I think I began crying immediately.

He said the baby’s estimated fetal weight was now in the 3rd percentile. He looked at me sternly and strongly urged us to have a n amnio so that we could “see what’s really wrong with this baby.” I asked again if there was any possibility that Kaden’s cleft and small size were independent things and he said, “Well, let me put it this way, lighting can strike the same place twice but it’s not very likely.” I’m not sure when he said it, but I also remember him saying, “Now we’re seeing multiple anomalies. It doesn’t look good.”

Complete emotional breakdown. My husband basically pealed me off the floor that day and carried me through the next several weeks. I was a basket case, calm one moment and bawling uncontrollably the next. I never went back to those doctors because, even if I had liked them (which I didn’t), I could not bring myself to walk into their office again.

Thank God for my husband. He pulled us through that very dark time through sheer force of will. I know that he was reeling on the inside but he maintained a stiff upper lip for me and, needless to say, I desperately needed it.

Thank God also for the new obstetrician my husband found. The first rays of hope were on the way . . .

HAPPY NEW YEAR!

2009-01-02T00:11:00.006-05:00

What can we say about 2008?

It was, um, Dickensian (the best of times, the worst of times, etc.). It was a year of trials, of great joy and of complete transformation. Most importantly though, it was the year our beautiful little Kaden was born. It was the hardest and greatest year of all our lives so far.

As evidenced by this photo, Kaden spent the first moments of 2009 practicing his grip (on mommy's champagne glass). He is an active and wonderful 6 month old who can't stop rolling, giggling and growing every day.

Kaden no longer has to wear tapes across his scar. He's healing beautifully and seems to have already forgotten the NAM. His palate repair surgery is scheduled for June 23rd so we've got the next 6 months to enjoy without surgery, without orthodontic molding and without all the doctors (though we really do like all of them).

Thanks to all of our family and friends who have been so amazingly supportive throughout the past year. We sincerely wish everyone a happy, healthy and prosperous 2009.

A Very Nice Day

2008-12-25T20:23:00.003-05:00

Merry Christmas. . .

Love, Kaden Clause

Happy Thanksgiving

2008-11-28T22:10:00.004-05:00

We have quite a bit to be thankful for this year . . .

First of all, Kaden is doing extremely well. The stitches on his lip were removed the day before Thanksgiving and he looks absolutely wonderful. More importantly though, Kaden is back to his old pre-surgery self. He's been playful and happy all week and has lighted up our lives once again with his amazing little laugh.

Second, Kaden's mommy and daddy have each other. It goes without saying that this has been a difficult year. We found out we were pregnant last November and it's felt like a million mile marathon since then. We were best friends before but this has been the ultimate bonding experience. There is nothing in this universe more solid than our love for one another and for our son.

Finally, we have an exciting future ahead of us. Sure, there's still palate surgery and orthodontia, possibly bone graft surgery, etc., etc. For the first time though, it seems we can finally see the light at the end of the tunnel. We're beginning to daydream about trips to the zoo and baseball games. We're beginning to really appreciate the wonder and excitement of every new day with our little boy. We're starting to exhale and it feels good.

After Surgery - Day 7

2008-11-23T12:39:00.015-05:00

Kaden had surgery to repair his lip, nose and gum line on Monday, November 17, 2008. It’s now 7 days later and he's well on his way to a full recovery. In the past few days he's managed to give us a few little smiles, which makes all the stress and worry worthwhile.

The picture to the left is the first picture we took of Kaden in the recovery room after surgery. After a grueling 6 and a half hours, Dr. Cutting emerged from the operating room to let us know that everything went smoothly and that he thought we’d achieved a good result (though it will take years to know the full result after healing). We relaxed slightly, but were extremely anxious to see our little one in the recovery room.

The anesthesia had not quite worn off and he was still mostly asleep. We weren't allowed to touch him at first, which was excruciating, especially when it became clear he wasn't breathing well without the oxygen mask.

The next 30 minutes were extremely scary as we watched Kaden violently gasp for breath while making loud rasping sounds. The nurses tried to remain calm and tell us everything was "normal" as they suctioned out secretions from his throat with a narrow tube. Kaden responded with more gasping, yelping and trembling.

The anesthesiologist was summoned and decided he should be given a steroid injection to reduce swelling in his throat from the breathing tube that was inserted during surgery. Another round of suctioning calmed him long enough for the nurse to put him in my arms. We sat for just a few moments before he began gasping for breath and jerking his body all over again.

My husband and I were absolutely beside ourselves with fear. The recovery team assured us over and over that he was okay and that he was having a reaction to the intubation which, they said, sometimes happens. Kaden was given a nebulizer and seemed to calm down though his breathing remained heavy for several hours.

The surgical team decided it was best for Kaden to spend the night in the pediatric intensive care unit for observation due to his breathing difficulties. My husband nearly broke down the second he heard "intensive care unit." I waited until we actually got to the PICU to have a crying meltdown that included screaming at a nurse who was trying to help us (I later apologized).

In between the recovery room and the PICU, our pediatrician (a former NICU doctor at NYU) came to examine Kaden and reassured us that his labored breathing seemed to be due to swelling in his nose and throat. She didn't hear anything is his chest or lungs and she was confident he was going to be okay once the swelling went down.

After a very long night at his bedside watching the heart rate monitor and trying to feed him small amounts of formula every 2-3 hours, we were relieved to find that he was okay and ready to be released in the morning. His breathing was still a bit heavy and raspy, but the heart rate monitor showed his oxygenation rate had been strong throughout the night. Although we felt a bit nervous about less access to doctors and nurses, we really wanted to get Kaden back home in hopes of diminishing the look of shock and confusion that had clouded his face since waking up in the recovery room.

The following days were brutal. My husband and I watched, fed, and comforted Kaden in shifts. We each got only 3-4 hours of sleep at a time. It was extremely difficult for either of us to feed or change him alone as Kaden proved to be extremely adept at wiggling out of his arm restraints.

Now, almost a full week later, Kaden seems to be settling back into the calm, happy and easygoing baby that he was before the surgery. Thank God. He's getting better every day and looking better too.

The stitches come out in 3 days. Stay tuned . . .

'Twas the Night Before Surgery

2008-11-16T16:28:00.008-05:00

Tomorrow is the big day and we're feeling far more nervous than expected. It's one thing to know a surgery is necessary and that the doctors have performed it on hundreds of other infants, but it's another thing entirely to imagine handing over your own barely five month old baby to anyone for anesthesia or surgery. Dr. Cutting told us we can expect the surgery to last six hours. In other words, an eternity.

Let me just say for the record something that I hope Kaden will know deep within his heart as he grows up . . . he was, is and always will be absolutely perfect to his mother and father in every way. This surgery is for him and not for us. We'll miss his wide smile and the beautiful face that he was born with and we'll carry it in our hearts forever. We love you so much, Kaden.

Prologue to Kaden – Part 4 - Au Revoir Appendix

2008-11-02T18:41:00.007-05:00

Just a few days after I fled the doctor’s office and decided not to move forward with an amnio, I woke up at 2:00 am with sharp abdominal pains. The pain was severe enough to keep me awake all night but not so bad that I couldn’t get dressed and go to work in the morning. My husband was leaving town for an overnight business trip to Boston and I reassured him that I would be okay, that it was probably just gas. I promised to call my OB as soon as I got to work to ask if there was anything I could take to relieve the pain.

By 9:00 am my doctor had given the green light to take Gas-X or Mylanta for what I assured him was probably just gas. He asked if I had any fever or vomiting. Nope, just the sharp pains. No bleeding. We agreed that I would call him at noon for a status report.

By noon the pain had increased. I was taking Mylanta as if it were candy but still no relief. Still no fever, vomiting or bleeding either so the doctor told me to go home and relax. If the pain persisted through the afternoon or I developed other symptoms I was to call him right away and go to the hospital for examination. My husband was nervous and decided it was best to make apologies to his boss and come back from Boston that evening in case I needed him. Thank God he did.

I threw up for the first time at about 5:00 pm but then, miraculously, I felt better. I called my OB and he was tentative. Maybe I had gotten out whatever was bothering my stomach. He told me to call him right away if I threw up again, the pain came back or I developed a fever.

Within an hour the pain returned tenfold. I was alone in my apartment and not sure that I had the strength to even call a cab to take me to the hospital. My mother in law, knowing I wasn’t feeling well, was on her way to the apartment to take care of me until my husband returned from Boston. She walked in the door at about 7:00 pm. Within minutes I was vomiting again. We called for a taxi to take us to the hospital. Because we live in the suburbs and my OB and hospital were in NYC, it took more than and hour to get there.

Here’s what I found out at the hospital: abdominal pain when you are 5 months pregnant is a complicated thing to assess. Since I had no fever, which is generally the first sign of an infected appendix, they performed other invasive manual testing to rule out pre-term labor and the like. The night was starting to get really scary.

My husband was by my side by 9:00 pm but we still had no idea what was wrong. Even worse, it was a busy night on the labor and delivery floor of our hospital and it seemed as though my belly ache was the lowest priority. We literally waited in the room for hours before an MRI machine was available for me at about 1:00 am. I will save for another time a diatribe against my original OB and the hospital care we received that night, but let it simply be said that I have never in my life felt pain as severe as my appendix rupturing and I hope that I never do again.

There was a point in the night when I didn’t need MRI results to tell me it was my appendix, the pain in that area became so penetrating and severe. My moaning turned into screaming and crying. Unfortunately the doctors did have to wait for MRI results so my husband, beside himself at that point, did his best to hold himself together and be there for me until they finally took me for surgery at about 5:00 am.

The hours right before the appendectomy are fuzzy to say the least. I was in a haze of pain, fear and morphine. I remember being met by a group of doctors right outside the operating room who asked rapid fire questions about my medical history and began explaining the risks associated with surgery, which I supposed was necessary for informed consent. Between grimaces and squirms I looked at the doctor and asked, “If I don’t have this surgery right away there’s a strong possibility that the baby and I will both die, right?” Yes. That was all I needed to know. I didn’t want to hear any more about risks or potential complications. I just wanted me and Kaden to survive and get to the other side of the whole horrific situation as quickly as possible.

I woke up from general anesthesia to the faces of my husband and mother in law telling me that everything was okay. The doctors had already performed an ultrasound and confirmed that Kaden made it through the surgery too. We were all so relieved.

I found out later that the doctors performed a laparoscopic appendectomy, which means they filled my abdomen with air, inserted cameras and thin instruments, removed my appendix and vacuumed my abdominal cavity to remove toxic matter that had leaked out. Fortunately, the perforation in my appendix was small and the leakage remained localized. How they were able to do all this without harming Kaden is beyond me, but I will always be extremely grateful.

My husband later told me how scared he’d been in the waiting room. How the surgeon told him before surgery that the whole procedure should only take 45 minutes unless the appendix ruptured, in which case things would be far more complicated and severe. After an hour and fifteen minutes passed with no word from the surgeon, he felt trapped inside the worst moment of his life. My appendix had indeed ruptured and he was faced with the unthinkable possibility of losing his wife and unborn son in an almost absurdly unexpected turn of events. I think it’s safe to say that was the longest hour and a half of his life. At least up to that point, anyway.

Countdown to Surgery

2008-11-01T20:49:00.006-04:00

Kaden's first surgery is just over 2 weeks away and we're a bundle of nerves and excitement. After several weeks of aggressive NAM adjustments, teething and feeding issues, hysterical late night screaming fits and all day crankiness, Kaden finally seems to be settling down.

Now that we're in the home stretch, it's imperative that we all stay healthy. The slightest cold or even cut in Kaden's nose or mouth would be cause for delaying his surgery. That is especially problematic when you consider the Operating Room schedule at NYU is so tight that we'd likely have to wait several weeks for a new date. Kaden is a trooper, but I don't think he'd be able to stand another couple weeks of wearing the NAM. And neither could we at this point.

We went to the pediatrician this week for Kaden's 4 month "Well Baby" visit and vaccinations. His weight is still below the 5th percentile (10.8 pounds) but his length shot up to the 10th percentile (Hurray Kaden!). His pediatrician is a wonderful doctor named Edith McCarthy. She started a practice called Care Intensive Pediatrics after practicing at NYU Medical Center's NICU for several years. She's an excellent pediatrician and we feel really lucky to have her on our team.

Despite all the tears and screams of the past few weeks, Kaden remains a very happy and strong little man. He's just starting to develop a laugh that his mommy and daddy find endlessly adorable. He's always been an alert baby but now he's really starting to engage and communicate with us. It's been an amazingly beautiful thing to experience.

Just a few short weeks left. Wish us luck!

Prologue to Kaden – Part 3 – Screening Tests

2008-10-26T00:01:00.001-04:00

After the initial diagnosis of bilateral cleft lip and palate at the 20 week ultrasound, our obstetrician suggested that we speak with a geneticist right away to learn more about the genetic implications and chromosomal “anomalies” associated with clefts. The doctor suggested this all be done immediately because we would not have the same options under the law after 24 weeks. Although I don’t recall whether he ever actually said the words, the meaning was clear: have an amnio so you can decide whether to terminate the pregnancy.

My husband and I were in such a fog that we got on the wrong train going home that day. My husband didn’t want to see a geneticist and wouldn’t even consider getting an amnio. This surprised me a bit because we’ve both always been very strongly pro choice. The thing was that Kaden was not a concept or a political principle. Kaden was his baby and he already felt strongly connected to him. He never wavered in his belief that Kaden was meant to be with us.

I didn’t know how to feel. I wanted to know but I didn’t want to know. The enormity of the decision we were about to make was staggering. Paralyzing.

I decided to see the geneticist and was not entirely sure my husband would be there until I saw him in the waiting room. I had a few questions that I needed to ask, the most important of which was whether there would be anything we could do in utero to help Kaden if an amnio detected a problem. The answer was no. Score one point in the “no amnio” column.

In a nutshell, the geneticist explained that in approximately 80 percent of cases a cleft is an isolated anomaly and there are no other issues. In roughly 10 percent of cases, cleft babies have one or more significant genetic anomalies that can have a wide spectrum of severity. Finally, in another 10 percent of cases there is a chromosomal anomaly such as Down Syndrome, Trisomy 13 or Trisomy 18, all of which can cause severe mental retardation, physical retardation and/or death. Although an amnio would be useful in identifying chromosomal and/or genetic anomalies, it could not rule out all potential syndromes or impairments. Also, the amnio would not indicate the severity of any conditions it detected, only the mere presence of the anomaly.

Prior nuchal transluceny screening, which was done at about 12 weeks, indicated that Kaden’s risk of Downs Syndrome, Trisomy 13 and Trisomy 18 were approximately 1 in 10,000, a very low risk level for my age. The geneticist told me that the presence of the cleft invalidated those results. Basically, Kaden’s cleft made it far more likely that this pregnancy would be that 1 in 10,000.

After wrestling with the million conflicting thoughts and emotions that flooded my brain as we sat in the geneticist’s office, I apologized to my husband and said I hoped he understood that I just needed to have the test (he did). I signed a consent form and waited with my husband for the doctor to call my name. My heart raced. I began sweating and felt the first pangs of a panic attack. I grabbed my coat, told the nurse I’d changed my mind and practically ran out of the office.

I never looked back. Not once. As difficult as not knowing would be, deep down I felt the same way my husband did. I desperately wanted to have the test and receive positive news. But what if the news wasn’t good? Well, I knew that I still wanted to have Kaden but I didn’t know if I could bear another 4 months of pregnancy, labor and delivery under the tremendous weight of a Down Syndrome or Trisomy diagnosis.

For the first time in my life, I had to completely surrender control of my fate to the universe . . .

Prologue to Kaden – Part 2 – Diagnosis of Cleft Lip and Palate

2008-10-18T23:22:00.009-04:00

Our story continues at the 20 week sonogram. I’ve attached a sonogram picture from then so you can see things the way we did at the time . . .

We went to see our obstetrician and have the 20 week sonogram in January 2007. For anyone who has not had a 20 week sonogram, it’s the big one, the one where the doctor basically does a survey of the baby’s body and organs to determine if things are “normal” or if there are “anomalies”. I use the words “normal” and “anomalies” intentionally; they soon became obnoxious and intolerable to me. The first time around the sonogram technician was smiley and lighthearted, telling us things looked great and that we were having a boy. She called in the doctor to review and he informed us that all looked fine but we needed to come back the following week because he couldn’t quite make out details of the baby’s face due to the fact that his tiny little fists were balled up in front of his face. My husband picked up on a hint of hesitation and a look of concern in the doctor’s face and asked if he saw a cleft. The doctor said that he couldn’t say one way or another if there was a cleft because he just couldn’t see the baby’s face. I remember remarking that it wouldn’t be the worst thing in the world if the baby had a cleft, that was fixable, and the doctor agreed.

We left the office feeling happy and relieved that all seemed to be well with our little one. Secure in the knowledge that we were having a boy we agreed on a name, Kaden, in honor of my husband’s father (also a “K” name) who passed away when my husband was a small child. We mooned over the sonogram picture --- “Kaden has daddy’s legs” I remember saying. We were already completely in love with our little one and making plans for a great future together.

I knew something was wrong immediately at the next sonogram appointment. The technician was somber, quiet, she kept looking at the baby’s head – but not at his face – she kept reviewing and measuring his brain and his heart. I asked if she saw anything unusual and she didn’t answer. I said “I know you need the doctor but . . .” She cut me off with “I can’t say anything. I have to get the doctor.” She walked quickly out of the room. My husband and I exchanged a few nervous glances. He squeezed my hand.

The doctor entered the room and, without a single word to us, began looking at the same things the technician had: the head and the heart. After what felt like an eternity he told us that our baby would have a bilateral cleft lip and palate. I felt relieved to hear that was the only problem he saw but perplexed at all the measuring I saw of the heart and the brain. The doctor told us that in most cases a cleft lip and palate are isolated anomalies and the babies are otherwise healthy and fine. However, he then told us that in about 20 percent of cases cleft lip and palate are indicative of more global genetic or chromosomal anomalies, some of which are “not compatible with meaningful human life” and suggested that we have an amnio and speak with a geneticist to determine if we should move forward with the pregnancy.

Sucker punch. That’s the only way I can describe the way I felt. I didn’t know much about cleft lip or cleft palate but that wasn’t really what I was worried about. Not compatible with meaningful human life? Really? Had that phrase just been used in any sentence about my baby? Amnio? Geneticist? Oh God . . .

Prologue to Kaden – Part 1

2008-10-18T22:21:00.002-04:00

Before we go any further, I feel it’s important to go back a few steps and tell the story of how we got where we are today. First of all, the story of Kaden cannot be told without some mention of the extremely traumatic pregnancy that led to the miracle of his birth. Second, his mommy is somewhat of a frustrated writer who’s probably never going to actually write that memoir she’s been contemplating since age 12 and she could use a little cathartic release at this point. Finally, and most importantly, it’s possible that someday another woman who is going through an extremely difficult pregnancy (perhaps involving cleft lip and palate) will happen upon this blog and take some comfort in knowing that she’s not alone – the way I did when I searched the internet for something (anything) that would make me feel a little better during the most gut wrenching and transformative time of my life.

Briefly, here’s the back story. Kaden’s father and I met in college 12 years ago and have been together ever since. We’re both lawyers, though I no longer practice, and we finally settled down in New York after several years on the West Coast. Though I always wanted to have children in a vague sort of conceptual way, there always seemed to be just a few more things we needed to do before I would be “ready” to be a mother.

We found out that I was pregnant in November 2007. I thought I had a virus. My husband looked at me with a big smile and said “You’re pregnant. I bet you.” He was right. Though it took us by surprise, we were both extremely happy. I had all these neurotic reservations up until the time I knew that I was pregnant. They all just melted away in the fog of happiness that ensued. We did all the nauseating things that expecting couples do: talked to my belly, bought baby name books, made plans to convert the spare room into a nursery. I remember going out to dinner with my best friend when I was almost 5 months pregnant (just starting to show) and telling her how extremely happy I was, how, for the first time in my life, I was feeling totally and completely happy. I should have known to be suspicious. Things were just feeling way too good . . .

First Post

2008-10-14T16:53:00.002-04:00

Our beautiful little Kaden was born on June 20, 2008 with a bilateral incomplete cleft lip and palate. This blog is for him and will chronicle our journey with our very special and amazing little man.

As first time parents we're learning a lot, particularly in the area of cleft treatment and repair. Kaden is a patient at NYU Medical Center in New York City and is receiving treatment from an amazing cleft team that includes Dr. Court Cutting, Dr. Barry Grayson and Dr. Larry Brecht.

Kaden's treatment began just three weeks after he was born with the insertion of a molding device called a "NAM" (which is an acronym for Nasoalveolar Molding Device). He is scheduled to have his first surgery to repair his lip, gums and nose on November 17th, 2008. As we understand it, this surgery will be the first step in a treatment process that will include additional surgery, orthodontia and speech therapy.

This is where Kaden's cleft repair process begins . . .