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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....

AFO Fitting

No, not UFO Sighting.  AFO Fitting.  AFO, you ask?  Ankle-Foot Orthosis

Jax's physical therapist wants him to get some help with his dorsiflexion, provide support for his ankles and help compensate for his leg/ankle weaknesses.  Right now, when Jax weight bears on his legs most of the brunt is felt by the ankle which isn't what is supposed to happen.  This is due in part to his dorsiflexion issues.  His feet are angled more so that his toes point towards his shins.  He's been wearing shoes more often which has helped but the AFO will help so much more.

The DAFO FA is the type of brace that Jax will be using.
We got a prescription from Dr. Alling based on our PT's recommendations and have been working with Jax's EI coordinator to get him set up with the AFOs.  Last week, an orthotist from Hanger Prosthetics and Orthotics came to my parent's house and custom fit Jax for his AFOs.
It's actually a relatively simple process.  They basically make a cast of each leg, cut them off and then use them to create the AFO.  Actually creating the AFO might not be that easy but for what Jax had to do it was a piece of cake.  Below are some pics of the process:

 



We were able to choose the foam color, strap color, and style of the AFOs.  There were many cute choices but this was definitely the one we HAD to choose:

Flames!!!
Here's what the little molds look like:


Jax, as usual, did great throughout the entire process.  He played with Daddy's beard, watched what the orthotist was doing and eventually fell asleep during the casting of the second leg.




After we woke up from his nap we went out to breakfast with our parents.  Yum!

It will take about 3 weeks for the AFOs to be made.  He won't have to wear them all of the time at this point.  Mainly for when he is playing.  I'll post pics of them once they arrive.
Read More 0 Comments | Posted By Robin edit post

The Twelve Days of Christmas Outfits: Wrap-Up

In typical Robin-blogger fashion, I started something and didn't finish it.  Surprised?  You shouldn't be ;)

So, here's a run-down of the remaining Twelve Days of Christmas Outfits:

Outfit # 6 - So Warm and Comfy

Outfit #7 - Penguin PJs

Outfit #8 - Good Things, Small Packages

Outfit #9 - Not exactly Christmas, but it's got red in it so it counts ;)

Outfit #10 - Cute Chunky BabyLegs


Outfit #11 - All Dressed Up


Outfit #12 - Christmas Morning Jammies
And one bonus outfit just because he's so cute:

Christmas Suit and Tie

Read More 0 Comments | Posted By Robin edit post

Seriously, People? It's January in the Empire State

It's only natural that there is going to be snow in New York in January.  It was going to happen eventually.  There was no way that we were going to make through the entire winter without a storm.  It graces us with its presence every year.  EVERY YEAR PEOPLE!!!  So, why is it that every time it snows around here everyone loses their ability to drive?  Why is it so hard for people to adapt to the driving in the snow?  I just don't get it.  There should not have been that many accidents today. 

And I know that naturally everyone blames road conditions on snow plow operators.  "Where were they this morning?"  "Why aren't they out plowing?"  "I haven't seen them in over two hours?"  "There's not enough salt on the road."  "There's too much salt on the road."  Blah, blah, blah.  If you knew how to drive, it wouldn't be an issue now would it?  If you're looking for someone to blame for that nasty white stuff on the road, blame Mother Nature.  She did it.  They're just trying to clean up after her.

Or if you prefer an actual human being to blame, blame the snow plow guy's boss.  Or his/her boss's boss.  Or better yet, the people that hold the purse strings on their budget and consistently force them to do more with less.  "Keep those roads clean, but with less man hours and less salt, okay?"  Chances are that snow plow person is doing the best they can with the resources available to them.  And they're at the bottom of the bureaucratic food chain with little say in how things operate.

Furthermore, I say we should show a little more appreciation to those that do their best to keep our roads safe.  These people are on call 7 days a week from October to April with little opportunity for time off.  They work shifts that don't allow for a lot of family time.  They are hardly around at home when it snows.  Now I know it hasn't snowed a lot so far this year so they've been home more.  But that's not always the case.  When it snows, they plow no matter the time of day, day of the week, or if they already had plans.  If it snows on Christmas, they work on Christmas.  All while you are spending time with your family, they are not.  They are out there trying to make sure you can get where you want to go safely.  They pretty much give up their lives for 6 months because they need to be able to get to work in an hour if called in. 

My point is this:  Instead of bitching about how crappy of a job they are doing, why don't you just cut them a little slack and drive a little better?  I'm sure they'd appreciate it.
Read More 0 Comments | Posted By Robin edit post

The Twelve Days of Christmas Outfits: Santa Hat

What better way to accessorize a red thermal and overalls than with a Santa hat? :)



Read More 0 Comments | Posted By Robin edit post

Finally Friday

(a couple days late)

Ahh, finally Friday.  Finally, the end of the work week.  Finally, we got our Christmas tree.  Finally, we got down to visit the Vaughan's.  Finally Friday!

I am so behind with Christmas, at least decorating that is.  I got the living room decorated back in the beginning of November because we were having family pictures taken.  Everything else is still in totes.  We hadn't even gotten our real tree yet.  Well, at least we have one thing checked off the decorating list.  We got the tree on Friday.  Now, it's time to finish decorating!  That's my goal for the rest of this weekend.  I mean, really, why bother?  Christmas is only a week away.  But, we can't have Christmas without decor.  My house doesn't look right without a tree in every room!  So, decorating shall be done!

We also took a little time out on Friday before Jackson's 6 month appointment to go down to the farm and visit the Vaughan's.  Jason has been friends with them since he was little and we felt bad we hadn't been down there yet.  There are a lot of people that we haven't visited yet and we really need to start making the rounds.  New Years resolution #1, maybe?

Friday afternoon, Jax had his 6-month check-up.  It went really well.  He is 26 inches long and weighs 21 pounds 14 ounces.  I know, he's a big boy.  But the doc is very pleased with how he is doing.  He is actually back on the growth chart and is starting to follow the "normal" growth curve.  Last time, he had gained a little too much weight. 

The doc remains a little concerned about his delayed motor skills development but he's receiving PT and OT already so we've got it covered.  I had told Dr. Alling that Jax's PT, Becca, was concerned about his ankles and wants to get him set up with AFO (ankle foot orthosis).  Right now he is not able to hold his feet/ankles straight and she feels that the AFO will help with that.  There was a lot more medical jargon on the note from her that I gave to the doc.  Bottom line, he wrote a prescription that we can use to get his set up with the AFOs (splints). 

Jax had his 6-month shots too.  He did great, as usual.  He has decreased sensation in his legs due to his SB so he usually doesn't even feel the shots.  Although, this time his legs did move in reaction to the shots being administered, which had never happened before.  Maybe he's getting more feeling in his legs!?!  Only time will tell....

Oh yeah, I failed to mention that he was the biggest flirt all day....smiling, batting his long eyelashes.  He melts hearts :)


Somewhat related to the appointment Friday: I heard from the Audiology group at Strong and we have a hearing test scheduled in February.  More on that when the day gets here. 

Okay, see ya later...gotta go decorate.  Christmas is a week away!!!!!!
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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