A YEAR!

Our little man is growing up so fast! Chance just turned 1, we cannot believe it's been a year since he entered our lives. He is so perfect, so amazing, such a blessing to us. He is doing so many cool things now, learning so fast and showing us how smart he is :)

His birthday party was a success, the whole family came to celebrate and Chance was very spoiled :) He was slightly fussy due to just getting vaccines the day before and having to deal with ALOT of people - but he took it all in and had fun :) He got a lot of really cute toys and clothes, thanks to my family for being so generous, he has had a lot of fun playing with his new things. He enjoyed his cake, wasn't exactly sure about the 20 people watching him but he eventually got into it. Heather made an amazing cake for his Monster themed party, it was perfect.

Chance just had Orchiopexy surgery for his undescended testicle and circumcision. While i was a nervous wreck he was cool as a cucumber and recovered quickly. He was very wheezy as he was still getting over a cold and had some issues with the breathing tube, but he was back to normal within a day. He will have some more scars as they had to make quite a few incisions, but they are already disappearing. What's a few more scars?

I am trying to get Chance evaluated for physical therapy as he is still not crawling or pulling up/walking and still needs help getting into a sitting position (although he is getting better with practice). I don't want to get ahead of myself but i think it's definitely time for him to be doing these things, therapy agrees he should be able to, he has no limitations for these things so practice, practice, practice is what we need to be doing, help from a professional would be nice too :)

He is so smart though!

He growls and screams when he wants something or is upset.
He does this funny grimace on command, it's so cute.
He claps when we say "yyaaaayy" or "good job".
He covers his ears and shakes his head no, although he doesn't understand no yet.
He points at things now!
Heather is convinced he says "Heather" although to me it sounds like "hudah!" but hey its similar.
He is learning more and more sounds and babbles.

It's sad to see him not a baby but it's so cool seeing him with such an awesome personality, he truly is my perfect little boy.

Love you Chance!

Wow. Slacker Mom Here

So yeah, it's been 4 months since i updated. Just call me "slacker mom".

I want to get back in the groove though, no reason i'm behind - i just get my lazy spells.

Chance is 9.5 months old. Really. Sometimes i can't even believe how big he's gotten. I go back and look at pictures from our time in the NICU, when we first brought him home - seems like a different world back then. When i pass St. Davids i get a weird feeling as i remember coming and going from that same parking garage for 13 days. I get the same feeling when i pass the Ronald McDonald House. It's intense, our lives have changed so much since then, since him. I honestly can't remember what i did or thought about before he was here, kinda like he was meant for me - he is my purpose.

It's been a busy few months. Doctor appointments for me (kidney stones, floating kidney, hyperthyroidism then hypothyroidism) and for him (blood in vomit? is he acting weird? trips to Dell for X-Rays and scans that amounted to just Mommy freaking out, and the occassional normal well-baby exam with a Spina Bifida clinic and ECI evaluation thrown in). Just a typical day in our lives ;-) I wouldnt' change it for the world.

Chance is progressing perfectly. He is beyond smart and he just LOVES to flirt and pretend to be bashful with the ladies. He's cute enough to be able to pull it off - we got ourselves a heartbreaker. He is not crawling although he is sitting up like he was born to do it. He can even stand when he is propped up, although he hasn't mastered getting off his heels and standing on his feet. It's cute though, it's so...Chance. He even just learned how to clap!

He is scheduled for surgery sometime in March for an Orchiopexy - gotta find that other testicle if it's there and pull it down. He'll get circumsized at the same time. I've gone back and forth with myself over getting it done, is it wrong that i make a decision about his body for him? Not every boy gets circumsized, maybe i should let him choose. But in the end, i am not a guy so i don't know all there is to know, and Brent is - he wants it done. I don't want Chance to feel more different, and when it comes to cathing - i feel like it will just be easier, i want things to be easier for him. But Chance, if you read this someday, know that i did struggle with the decision.

I've been trying to come up with themes for his 1st Birthday party...the only cartoon he really seems to like is Mickey Mouse, but it seems to cliche to me. I'll post when i've figured out the perfect theme that just screams...CHANCE!!!!

So here are the brand new pics of my grown-up baby. And the video of course. ENJOY!

Love you Chance!
Mommy.

Good Firsts & Bad Firsts

I was a bad mommy this morning. So before i repress the memory i want to make sure i record it so little man knows exactly how UNperfect his mom is :)

At 5.5 months old, Chance experienced his first Fall, and i don't mean the kind with the pretty leaves, windy days, jackets and scary lawn decorations, although this is his first Autumn also. The kind of Fall he experienced this morning was the kind where he starts on the bed and ends up on the floor.

That's right. This bad mommy let her son roll off the bed this morning.

Let me tell you nothing can describe the sound of a baby hitting a floor. And me being maybe 10 feet away in the bathroom, screaming "NOOOOOO!!!!" as i run toward the screaming hump on the floor just doesn't do it justice.

I guess it was bound to happen eventually, these are the moments that teach us we are not better then everyone, and we do make mistakes. I'm not perfect. But Chance is pretty darn near it. True to form he cried for maybe a minute and a half and then was perfectly satisfied with a bottle of Cherry Pedialyte.

God i love this kid. I don't deserve him, but i love him.

Needless to say he just told me in the most traumatizing manner possible that, "Mom, I'm a little old to be laying on the bed by myself, want me to show you why?"

Got it. Thanks, Chance.

Now that the "Bad First" has been documented, lets move on to the happy stuff :)

Chance managed a pretty good rollover at Miss Sarahs. Mommy didn't get to see it, but i'm so proud anyways. He even mastered the more difficult "back to front" roll! At 5 months, we had been led to believe he would be behind in the physical milestones - but he keeps showing us that NOTHING is holding him back. I can't wait to see it for myself. 

But because Chance is Chance, his first roll is met with a couple more big deals. Let's talk about them...

He can now, witnessed by Mommy, Daddy and Grandpa and Grandma Reynolds, push up on his arms during tummy time. Weak core? I don't think so. Soon we are going to be watching him crawl like a mad child across the floor, but until then - man i am so proud of him.

And since the doctors keep asking if he's doing it for some reason, he finally decided he would stop keeping everyone waiting and start grabbing at some toys. Now those gyms with the hanging rattles and noisemakers and funny stuffed animals make sense, he's Hell bent on tearing them all down. Finally he's noticed he has hands and he can grab things with them.

Every major milestone met. On time.

What's Spina Bifida?

Mommy loves you Chance <3

Where does the time go?

Well Chancer's is growing up before my very eyes. I love all the new things he is doing, but boy sometimes i think back to those newborn days and get a tear in my eye. He is so big! At 4 months he was 15 pounds 13 ounces (50th %) and 24 inches(10th %)...still my little chunker. He just had his SB clinic, hip x-rays, renal ultrasound, urodynamics and MRI. Hips are in their sockets, only one kidney has hydronephrosis now! Urodynamics was a nightmare, it took way too long to do the tests, he was tired and hungry and they couldn't get the catheter in right so he got irritated. UGH. I don't even know if they got accurate results. I so wanted to have that information too...Little man also got new splints, they are saying he will need AFOs to walk...i'm still holding out that he will be strong enough without them. We might even get some home therapy started soon. He had some constipation issues for a little while, prune juice and water seem to be helping but his rash is getting worse...still trying out new cremes but nothing seems to be doing the trick. He is still up 1-2 times a night, pedi says not to feed him but WOAH would i have an unhappy baby if i tried that. He's my little formula monster!

New things with my sweetheart...

He just started laughing at noises and faces, i love it!

He has started some rice cereal and a couple other solids, still a work in progress

He's very close to sitting on his own, so strong!

Here is a video of the love of my life at 4 months:

My new from the Akin is that i may have hyperthyroidism. My numbers were off the charts so i have to see an endocrinologist. I'm getting my left kidney stone removed on September 29th, it's around 6mms.

DJ was in an accident in Afghanistan and had 3 leg surgeries. He will be coming home next week. Amber and family are finally back in the states, VA.

Here are some new pictures of Chance, God i can't believe how big he is!

 

Love you Chance baby!

Where's the humanity?

Maybe it's because i like to torture myself. Who knows.
I've found quite a few posts created by other moms on Spina Bifida Kids that approach the subject.
Abortion.
Termination.
Insert synonym.
A few of us, yes myself included, have ventured into the depths of the "Termination for Medical Reasons" board. Why do we do this to ourselves? A lot of reasons.
We want to help those who may still be on the fence by providing our stories.
We want to see what the other side of the coin looks like - we could have been there.
We want to know what the other members of the TFMR board thinks of this diagnosis.
I could go on, but even i can't pinpoint what makes me browse this board for Spina Bifida related posts.
But i'm sure i do it for the same reasons that i Google news and articles about Spina Bifida.
The biggest reason is to obtain knowledge. I want to know what could lie ahead for us on the journey.
The other reason, i am ashamed of myself to admit, is to read the comments underneath these articles.
The comments that are written by masked and anonymous members who would never dream of reading their text to your face.
The Internet is the "information highway" and unfortunately, that information can come from any person who knows how to peice a sentence together, even an uneducated and poorly thought out sentence.

But i did it again today. I don't know why. I will never understand myself.
Because when i think i can't lose any more of my faith in humanity. When i think all hope is lost for us. I read something, or hear something, or see something, that makes my hope and my faith sink a little lower.
And here i didn't think i had any left.

When i read comments under Internet articles on Spina Bifida, articles written by sad human beings, i am always, always, always disappointed.
Similar to the Termination boards on Babycenter, i read how our kids are a burden, and we show we love them more by putting them out of their misery.
I hear we are selfish parents for putting them through a poor quality of life and making them suffer through endless surgeries.
I read how this world is full of too many human beings, and those that are "broken" should not poison and contaminate this society with their "handicaps" when there are too many people here already.
I could feel my lip curling up in disgust just having to type that last sentence, knowing i was basically copying and pasting a real opinion. Actually written by a fellow human being.

How did we become like this?
Is these comments normal thinking? Or are they random thoughts from sad, sad people?
I hope the latter.
Along with praying to God every night that he continue to bless our family with all the gifts we have been given, I pray to Him, that please, please can He show the world what they are missing.
Show the world God, what Spina Bifida really is.

Spina Bifida is my son, Chance.
It's the beautiful baby boy, sleeping next to me in his boppy with a blue blanket covering his precious body and his chubby cheeks pressed up against the pillow.
It's the baby boy that my entire family can't get their hands on enough.
It's the baby boy who's smile is by far the most gorgeous site i have ever seen, and whose laugh can take me from despair to elation in a split second.
That's what Spina Bifida is.

Now,
I've been nice this entire post. I've tried to be respectful of other's opinions.
But as i've said before, this is my blog, and if you can type your poluted thoughts for all the world to see, i think it's only fair i offer my completely biased, over emotional and uninterrupted  thoughts on what i think of your so called opinions.

So here it is.
To all the people in the world that think they are more worthy of being here because they are more "normal" then my son who has a birth defect.
My son is 100% perfect and made EXACTLY the way he was supposed to be.
He is not a burden on society or on our lives or ANY of his family's lives for that matter.
He will have a FANTASTIC quality of life because i will see to it, if it's the last thing i do, that he is the happiest, most loved little boy on the face of the planet.
Each surgery he has been through, and will have to go through inevitably in the future, make him 100 times the person you are.
And lastly, if i were to EVER meet you in person, and you were to tell me that YOUR child who is healthy and "unbroken" is better then MY son, if you were to tell me that children like mine will not contribute to society as much as YOUR kid, that our kids' healthcare costs too much to make their lives WORTH the life of YOUR KID and that we should have just "called it quits" when we found out about their condition, i will make it my personal mission in my life, to make yours a living Hell, for their is no greater rage in this world, then the rage of a mother who has been told by some low life, pathetic, ignorant peice of trash that their child is not meant to be here.

So for all of you that feel that way about babies and children and teenagers and adults and the elderly.
Go jump off a cliff.

And that's the end of my rant.

Oh wait, let me present to you the love of my life.
If you think this child doesn't deserve to be here, you don't deserve to be in the same room as him.

Splints!

So Chancers is 3 1/2 months old! Where does the time go? I look at him now and try to picture how he looked the very first time he was shown to me in the operating room. The first time i got to kiss that little cheek. Nothing will ever compare.

He was fitted for his splints and if i do say so myself he makes splints look ADORABLE. These will help stretch his ankles so he is able to point them past neutral. Something called "plantar flexion". His ankles already look better, i wish i had before and after pictures to compare.

I contacted his urologist and based on the cathing log i brought in, we are to continue cathing twice a day until his next Spina Bifida clinic in September.

He is smiling and sometimes even laughing! He loves to talk to himself and he has gotten great at focusing on objects and people. He moves his little legs like CRAZY not to mention his little toes too! We feel so blessed that he seems to have function everywhere. His head control is awesome, very close to perfect - although sometimes he does look like a cute baby bobblehead :) He is so crazy smart, i am truly lucky to be that boy's momma.

Some new things about Chance -

We figured out he is going to be a TV watcher like his parents. He LOVES cartoons - it really helps the cathing experience go smoother!

He is 13.5 pounds of chunky baby! Up to the 45th percentile. I stopped BF-ing so he is full of formula.

He's gotten to the "pick me up or else" stage and very rarely is happy laying down by himself. But we are more then happy to oblige :)

He wakes up 0-1 times a night now, depending on his mood i guess. Helps Mom and Dad get some sleep though!

I still haven't gotten over my obsession with taking pictures of him, probably never will. I swear that kid is going to be a model because people taking his picture is all he's ever known! And because he's so handsome of course.

So here are my/his latest accomplishments.

Love you Chance! <3

Back and forth we go...

Well on day 9 of life Mr. Chance received his VP Shunt. I was a nervous wreck of course, but Chance was "whatever" about the whole ordeal, coming through like a champ :)

After some disagreement between doctors on whether his scans showed enough "improvement" after the shunt placement, we were FINALLY sent home with our son on day 13!

It's great being at home with Chance. We finally feel like a family and can take care of our son without interference (although helpful) from nurses. We get to see his little personality emerge and it feels so wonderful, we have been waiting for this for too many months...wondering and worrying about what it would be like, what he would be like. We worried for no reason, he couldn't be more perfect if we had hand picked him ourselves.

Of course we have a lot to learn being first time parents. But the learning is beautiful and frustrating at the same time. Some day we will look back at all of our mistakes and laugh at how scared we were.

But here are some things we discovered about our son that we couldn't have while he was in the NICU.



He actually LIKES baths :)

He HATES diaper changes and gets the worst diaper rash!

He likes to snort when he eats :)

Tummy time is more nap time...to our dismay.

His focal point is a ceiling fan and he can pretty much stare forever.

He loves to sit up propped on pillows like a big boy.

His favorite place to sleep is in our bed...like a big boy.

And the list pretty much goes on.

Chance just hit his 2 month birthday. It's been a LONG time since i updated. But the life of a full time working mother is a bit hectic.

Chance is pretty much the light of everyone's lives. His Grandparents Reynolds can't get enough of him. When they visit on the weekends he pretty much has a permanent home in one of their arms. His Grandparents Dutton are basically the same, either when they are rocking him, playing with him or just chilling on the couch...they are so in love. And Aunt Heather of course gets to babysit everday and loves every minute (she just got peed on for the first time today, she was so excited ;-))

But most of all he is the WORLD to his parents. We have been through so much together. Yes, now that i have updated it's been 2 more shunt revisions, 4 surgeries total. But like i said before, everything has been worth it, because this kid couldn't be more perfect in our eyes.

We love you more than life itself Chance <3

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