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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....

Here's What's Happening in Jackson's World: New AFOs

Jackson's been rocking his new AFOs for over a month now, but I thought you'd like to see what they looked like.


Okay, they're not really that much different than his old ones.  ;)  Same style, just bigger and with an additional toe strap.  Here's what his old ones looked like.


When you look at them together though....



....man has he grown!  I mean, we know he's bigger.  Anyone that picks him up on a regular basis knows that he's grown (insert biceps of steel!).  But it's amazing to see how much he has grown over the past year.  He's growing up too fast in my opinion.  *Sniffle*  It kinda makes the ovaries twitch and gives me a little baby fever.  Hehehehehe

We could've picked something different, but honestly I didn't really like any of the other strap options.  He's not really into one specific thing like dinosaurs or whatever and most of the other straps were a lighter color that I thought would get dirtier faster. 

I have since seen wraps which I think can be applied to the plastic part(?).  This wasn't something that was offered and we didn't know about it when we ordered this last pair.  But maybe next time we'll look into it.  At this growth rate, he'll be needing a new pair soon anyways!  Or maybe a different style (KAFO or something?).  One can hope, right?

I'm liking this one, what do you think?



In other equipment news, he now has his bath chair.  I'll have a separate post for that in the near future.  As far as the wheelchair and stander go, paperwork has been submitted, both have been approved and ordered and now it's just a waiting game.  Jason and I aren't exactly patient people (shocking, I know) and I have to admit that this whole process has been driving us bat-sh*t crazy. 

Lack of communication is really what infuriates us the most.  So much so that it lead me to call out Yates County and our Service Coordinator on it.  In a lengthy, bitchy-yet-professional email.  I do my best arguing in print.  It gives me time to really proofread and develop a strong argument.  After a little back and forth, we finally feel like we are getting somewhere not only with his equipment but with some other things as well (like Speech Therapy and Happiness House).  We also decided that it was time to change Service Coordinators.  We've spent way too long just dealing with the people that we've been working with instead of demanding better.  It was only hurting Jackson.  So, starting in a few weeks we will be working with a new Service Coordinator.  Jackson has a little over a year left in the Early Intervention program and we want to make it a good year before he transitions out.  I think this change will definitely help us accomplish our goals.

But in the meantime, we are still waiting for the chair and stander.  And waiting, and waiting, and waiting.  "Patience is a virtue."  Repeat.  "Patience is a virtue."  Repeat. "Patience is a virtue."  Repeat.....  ;)

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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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