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Welcome! Welcome!

So, what’s my blog about? A little bit of this, a little bit of that, tons about Jackson and a sprinkle of Spina Bifida awareness. Why? Because that’s our life and we want to share it with you. Hope you enjoy!

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  • He's Here!!!
    So, on Monday Jackson was super active, like rolling, flipping, kicking all day.  It was the weirdest thing.  He had never been that active....

Take Me Out to the Ball Game


Let's dust off the old blog and write a post, shall we?  ;)

Hey there, cool people.  It's me.  You know, blogger extraordinaire?  Oh wait, you can only call yourself that if you actually blog more than once a year.  

So, anywho.  We've been pretty busy.  Way too busy for me to spend all day on the computer.  <---Hahahaha.  I know.  I could barely write it without LOL'ing.  

Last Friday was Big J's birthday.  We also were able to score some tickets to the Rochester Red Wings game versus the Syracuse Chiefs courtesy of SportsNet (thanks SportsNet!).  In case you don't know the connection, SportsNet sponsors the Rochester Rookies.  Little J has been a part of the Rookies team since he was 2. 

Little J was asked to represent the Rochester Rookies and throw out the first pitch at the game!  I know, right?  How cool is that!?!  The first baseball game he's ever been too AND he gets to go out on the field and throw a pitch.  Wicked cool.  And a great birthday treat for Big J because he got to go out on the field and help throw.  ;)

Not gonna lie, I was extremely nervous about how this was going to go down.  Either Little J was going to do a great job and have a lot of fun OR he was going to get completely overwhelmed and refuse to participate.  Thank goodness for his headphones, because I think that made all the difference.  It may have also helped that we got there a little early and let him get acclimated to his surroundings.  (Yeah, you read that right.  We got somewhere EARLY.)

The staff at the Red Wings was great - from getting us VIP parking, to making sure we were able to access the field - the overall experience was pretty cool.  Little J got to keep the ball he threw.  They even got to get their picture taken with Spikes, the Red Wings mascot.  

Photo courtesy of Red Wings

 Photo courtesy of Red Wings



Here's the video of him getting some practice throws in while we waited for the game to start:



And a video of the big moment:




Frontier Field is very nice, food is great and the fireworks were so fun!  Last night was Batman night, hence Jackson's Batman attire.  Big J was very excited to get his picture taken with Cat Woman on our way out.  ;)








We can't wait to go back for another game.  Thanks again SportsNet and the Red Wings for the tickets and for hooking Little man up! 

Talk to you again in a year or so.  Or next week if you're lucky...and I'm ambitious.

Peace out homies!



Read More 0 Comments | Posted By Robin edit post

Working Hard or Hardly Working


I'm going to say....working hard!  At least Jackson has been anyways...when he feels like it.  ;)

In typical threenager fashion, he'll do what he wants, when he wants and he's been giving all of his therapists (and teachers too for that matter) a peak at the stubbornness he's inherited from both sides of the family.  <---You see, Jason, I didn't blame just you that time like I usually do.  ;)

Jackson has been working a lot on core strength, standing, walking and getting in and out of his wheelchair during PT.  Aqua therapy has helped a lot with core strength.  He still goes once a week for a half hour session.  He's also turned most bath times into a therapy session as well by attempting to do the backstroke every chance he gets. 

They've been trying different walkers out with Jackson at school to see if we can find one that would be a great fit for him and his current abilities.   The first one they tried actually offered Jackson too much support and he just let it do the work for him.

The walker he tried yesterday though actually appears to be a better fit.  He'll still probably need some sort of sling to provide some additional support but he seems to actually use this particular walker as it's meant to be used.  He's also been attempting some walking during therapy without a walker.  He relies heavily on using his PT for balance and support, but seems to be doing pretty well in that arena too.  He's not ready for independent walking and still requires a lot of support, but he's getting there.  We're SUPER proud of him.

Nama and Papa were able to head on over to school yesterday and watched Jackson during PT.  And, of course they got video!!!

Check these out:





It seems only fitting as it's Thursday to also throw in a little #tbt action and show this little gem from way back when.  His first "steps".  ;)



Peace out.





Read More 0 Comments | Posted By Robin edit post

I'm Baaacckkk!!



For a while there I thought I was doing pretty well.  Blogging every couple of weeks.  I mean, c'mon that's excellent for me.  And then BAM!  Radio silence.  I haven't posted anything here since last August.

WTHeck is up with that? 

Sure, we're busy.  But that was never an excuse before.  I always managed to make time to type out a few blurbs here and there.  Why could I not motivate myself to post anything? 

Well, I think I finally figured it out.  I feel like my posts have primarily focused on Jax and what he can't do.  It may not seem that way when you read them, but it's there.  Intertwined with the progress reports from therapists and recaps of doctors visits are tiny slivers of he can't do this or he may never do that.  My sarcasm may have masked it, or maybe it didn't.  Maybe you could tell.  But it was there.

It didn't really hit me that I spend far too much time focusing on what he can't do until I took the Lay Advocacy classes last summer through The Advocacy Center.  I had heard of people first language prior to these classes but it was something that we covered at length one day and it struck a chord. 

Had I been spending too much time focusing on Jax's disability instead of on Jax himself when I blogged?  I think it's possible that I did.  And I feel a little guilty about it.  I want Jax to look back and read posts about how he spent his night last night trying to impersonate Steve Harvey on Family Feud.  Or, how he loves to count money and is obsessed with watches.  Sure, I also want him to read about he was followed by a few great specialists and worked with some amazing therapists that have helped him to become the great kiddo that he is today.  Because after all, having spina bifida is a part of Jax.  But, it's not all there is about Jax.  I think there is a fine line between spreading awareness about a disability and spending too much time focusing on it.

So, I think that's one of the reasons why I took some "time off" from the blog.  To reflect on what I why I had started the blog and what I really want it to become. 

That, and I'm lazy.  When I have the option of going to sleep or writing a blog post, I choose my bed.  Every. time. 

Don't get me wrong.  I'm going to post about the doctor's visits, progress reports and what not.  Because let's face it.  I didn't fill out the baby book (yet) and my memory is shot.  This is the only place (besides Facebook) where I can look back and recall what happened on this day when.  But, I want to spend more time just chronicling what we're all up to.  My little online diary.  I just happen to give you all permission to read along.  ;)

So, heads up.  More posts are on the way.  I swear.  Like a sailor, I swear.

Happy Friday Everyone!!

Check out this awesome shot from our Christmas Photo Shoot.  Thanks Amanda Lee from Ten Feet Photo for the amazing pics.
Read More 0 Comments | Posted By Robin edit post

20 Questions with Jax



I started writing this long post on my Facebook wall about last night's conversation I had with Jax and it hit me......you jackwagon, you have a blog.  Remember!?!  That would be a great place to get this all written down before you forget it.  

So, now I'm back.  To let you know.  I can really write some posts.  <---- I'm suddenly in the mood to watch Dirty Dancing.  Weird.



Lately, we've been attempting to get Jax to learn some basic things about himself - you know, name, age, birthday, etc.  At some point, when he's cooperative I'm going to attempt to video him saying all of those things, because it's so stinkin' cute.  

Well, last night he was being extra chatty and I saw that as an opportunity to ask him some other questions just to see what his response was.  I figured now was as good a time as any to get his views on life's most-burning questions - like favorite color and what do you want to do when you grow up.  ;)

I already shared on my Facebook page his answer to the "What do you want to do when you grow up" but if we aren't friends then you missed out on this super cute answer:

"Ummm, eat cookies.  And donuts.  And.....run to Wegmans.....and Lowes.....and Wal-Mart"

Really!?  Kids say the darndest things, right?  I guess we spend too much time going to Weggies, Lowes and Wal-Mart.  Ahh, the joys of being a homeowner and adult.  I'm pretty sure he got the cookies and donuts thing from Boppy.  ;)

I asked him if that was all he wanted to do and he then mentioned something that I translated into "Be on TV".  Because, while I'm familiar with Jacksonese, I wouldn't consider myself fluent in Jacksonese.  

Guess what kiddo?  I'm totally cool with you being on TV.  As long as you are getting paid for it.  Weatherman, News Anchor, Actor, Game Show Host....those are all perfectly acceptable reasons to be on TV.  COPS, Jerry Springer and Here Comes Honey Boo Boo are not.  Please remember that.  K, thanks!

I mention Game Show Host, because I also asked him if he wanted to be a police officer, a lawyer, a game show host or a doctor and he said "Game Show Host" with the biggest smile on his face.  Jax LOVES game shows - his current favorites "No Deal, Deal" and "Famly Food"  <---that's what he calls them.  I really think he likes the numbers and applause.  :)  Heck, I start applauding him at home more if it gets him to eat his fruits and veggies and pick up the 50 million matchbox cars that are all over the place.  

Here are some of the other questions that were answered last night....


How old are you?  "Free"  <---gotta love the cute little 3 year old lisp

Are you a boy or a girl?  His initial response was a Robin-esque look of disgust as if I was asking him the most ridiculous question ever and then he responded with "Boy" which was laced with an attitude of "Duh!".

What's your favorite color?  "Gween"  <---he seems a little undecided on this one.  Because the other day he said "Yellow" and then quickly changed to "Wed".  So, the I think the Jax jury is still out on this one.

How old is Mommy?  "Five"  <---It was a loaded question for sure, but I'm glad he went low instead of choosing another number he likes to recite often - 99!

What's your favorite animal? - "Kitty Cat - Meow, meow"

Who is your friend?  "MJ, Eli, Noah, Merica, Nicky"  <---all of his buddies from school.  Cue my melted heart.

What's your favorite food?  "Macroni.  And.  Cheeeeeeeessssseeeee"  <---that was a given.

What's your favorite drink?  "Chocolate Milk!!"  <---another given

What's your favorite TV show?  "Deal, No Deal.  Howie Mandel."

What's your favorite number?  "Five"

What's your favorite letter?  "B"

What's your favorite car?  "Chevy!  G.M.C.!!"  <--darn tootin' there kiddo.  Although I think Jeep would've been an acceptable answer too.

So, I don't think that adds up to 20 questions, but there sure were a lot of them.  It was so fun to see and hear his answers.  For some of them, he actually took a second and put some thought into it.  And most of the answers were said with a ear to ear grin.  I'll have to do this again some time and see what he comes up with next.

Other cute things that happened last night during our bedtime ritual - numerous requests for hugs and kisses with Mommy and Daddy, tons of laughter while throwing himself backwards on the bed (we like to call that proprioceptive input - it's good for sensory processing) and playing airplane with Daddy.  

He also performed a rousing rendition of "Boots and Pants" while he getting his jammies on.  I asked him if he wanted to wear shorts or pants to bed and that spiraled into a goofy "Boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants and boots and pants".  I think you get my drift, lol.  But if not, here's the little piggy singing it too:


'Til next time.  Which I'm hoping it sooner rather than later.  :)


Read More 0 Comments | Posted By Robin edit post

Karen Runs 4 Jax!


How many times have you read someone's FB status about him or her going out for a run and responded with (or at least thought about responding with) a "Run a mile or two for me, okay?"  Now, imagine that one phrase kick-starting a worldwide movement and awesome non-profit IR4 (I Run 4) was born.  

"God gave me the gift of mobility.  Others aren't so fortunate.  So, I run for Michael.  Who do YOU run for? - Founder, Tim Boyle


We came across this group because it was mentioned in one of the Spina Bifida groups on Facebook.  As I went to the website and read a little bit more about the organization I thought "What a great idea!" - matching runners up with buddies that for some reason or another cannot.  Both would benefit from a little encouragement - runners get motivation to get out there an run and buddies get motivation to just go out and conquer their world.  So, we signed Jackson up to be matched with a buddy.

Because the wait list to be matched has so many more runners than buddies, Jackson was matched within a week.  Runners have been waiting upwards of 4 - 6 weeks to be matched.  <-----Sooooo, if you think you know a person (young or old) that would benefit from being matched up with a runner, so sign them up.  There are tons of super cool runners waiting to be matched (3,200 of them to be exact).  :)

Jackson's super-sweet, way-cool runner is Karen.

So, how does this all work?  Well, any time that Karen goes out for a run, or gets a workout in or participates in a 5K or PT test she posts in the IR4 group on FB and lets Jackson know all about it.  Sometimes she'll post pics of what she sees out on her runs, or posts her awesome stats on how far and fast she ran, or she'll just post that she's been thinking of him and shows him pics of her family, dogs and way-fun new Jeep!  We show Jax all the pictures, which he loves to see!








We, in turn, post what Jackson has been up to.  Whether it's been going to doctor's appointments, playing outside in the sun or hamming it up on video.  





 Karen has even sent Jackson some sweet swag!  She bought both her and Jackson some shoe tags.  Hers say "IRun4 Jackson" and Jackson's say "Karen Runs4ME".  They are so cute!


She was even very thoughtful and sent Jackson some birthday presents!  All of this favorite things - Cars, puzzles and Spiderman!  :)  We've got a little something to send out to her, but I've been trying to persuade Jackson into doing a little artwork for her and so far he hasn't been been a willing participant.  Soon though!


I'm so glad that we signed Jackson up for this.  Not only does it give his runner a little inspiration to get out and brave the Texas heat to get in an extra mile or two for her little buddy, but it also gives Jackson some else to look up to.  He may not understand it now, but I think this group will be very good for him when he gets older and is able to read not only Karen's post but see all of the other people that post in the group.  There are tons and tons of cool people in there that I think he would like reading about.  And I really hope that Jackson and Karen are buddies for a very long time.  She is so nice and has a great family and we are sooo proud and happy to be paired with them.  Who knows, maybe some day we'll take a vacation to Texas and meet her in person!

Want to find out more about I Run 4?  Check out their website at http://www.whoirun4.com/.  



Peace out!

 
Read More 0 Comments | Posted By Robin edit post
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Another Smith Family Blog


I started this blog as a way to keep family and friends, near and far, up-to-speed on what was going on with Jackson. Jackson was born with Spina Bifida and Hydrocephalus. When he was born, he had to have surgery to close the lesion on his back and then had a follow-up a month later for his shunt placement. My goal was to make sure everyone got an updateon how things were going and what better way to mass-update then the good ole interweb ;) And since everyone isn't on FB (WHAT!?!), I figured that a blog would be the next best thing.


Since then, the blog has morphed into a plethora of stuff ranging from date nights, favorite recipes (okay, haven't posted any recipes yet, but they are in the works), our dog, our house, my awesome hubby, projects from Pinterest that I actually complete, SB awareness and what's going on in Jackson's world. I'll be honest, it's 73% about Jackson and raising a child with SB, at least according to my last calculation. Oh, and pictures. Lots of pictures.


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About Me

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Robin
Gorham, New York, United States
I’m a notorious procrastinator, a Martha Stewart wanna-be (minus the orange jump suit), and I have a high attention to detail, although some people might just consider me a control freak, perfectionist pain-in-the-arse! Oh yeah, and I’m a tad sarcastic. I've been married to my best friend for 5 years and we have one amazing little toddler, Jax. Our other "baby" is a 4 year old Great Dane who thinks he's a lap-dog. All in all, I love my life!
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