A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, December 9, 2010

Up, up and away!!!

And the day arrived for Nickolas to get his first piece of equipment. And I wasn't quite sure how I felt about it. I was excited for him to be able to be upright. I was afraid he wouldn't like it. And I was nervous about the idea of equipment - something that broadcasts that he needs help, that he is different!
And at the same time, knowing that this would actually help him be where he is supposed to be - standing - to help with those developmental tasks. That this was actually a really, really good thing. That was my rational side - but who ever said that motherhood was the same as being rational!
I had a picture in my head of something large and metal with lots of straps and stuff.
Googling standing frames and infants did not help, I just couldn't get a picture in my mind about what we were going to come home with.

But the day arrived, and Leslie the orthodics guy came out, with this little tiny metal and foam thing. And that was it!
First we did the AFO's. These are solid plastic braces that give support to Nick's ankles. They go from below his knee and extend past his toes (for growing room). I think these will last us a year before we get new ones. At first Nick wasn't quite sure what these things we put on his feet were.
But then he decided that they were ok. He is only going to have them on when he is in the frame, not when he's crawling around. But he seemed to think they were great.
Then it was stander adjustments. This is something that is personalized for Nick. So it is all the right height and width and everything for him. It was marking where his feet are going, where the strap around his chest is going, and that the foam for his knees were the right diameter and placement.

After that, Leslie left to make those adjustments and Nick and I just waited in the room. Nick decided to explore some of the room. He was looking out the window (I positioned him here - he didn't pull himself up) but was really happy looking at all the cars and people out there (not too much snow). And I figured it was a pretty good time to take a mommy and Nick picture.

With the AFO's and the frame, we want his skin to be covered, but have no fabric bunching up. So under the AFO's he just has socks that come all the way up. And no bulky jeans or pants with the frame. The baby legs are perfect! Thanks to Sara (a fellow  SB mommy - Ruth's mom) and her leg warmer contest  and her online store http://www.babysnazz.com/ Nick had the perfect thing to wear with his standing frame. I LOVE these leg warmers!!!

So finally Leslie came back and we were ready to go!

And we are up! Whoa


Nick wasn't quite so sure what was going on.

Then he dropped his tiger! I could see exactly what he was thinking! Oh crap! How am I supposed to get that now?! But he actually stopped fussing when he was thinking this over.

The solution!

Had some last minute adjustments. If you notice - Nick's belly is hanging out of the elastic chest strap - that was most of what we had to change - now his belly doesn't hang out.

So we are all ready to head home. We had to pay for everything - I could not believe how much these things cost! Luckily the government pays for 75% (ADP - assistant device plan) and our insurance should pay for the rest. But they were $2000 each piece! We only had to pay $500 each, and insurance will reimburse us. I guess I shouldn't be that shocked. Everything is so expensive.
The standing frame is so portable - I just hooked it over the handle of Nick's stroller and off we went!

Nick had to check out his new equipment. He really liked how blue everything was!

On the way home we needed to stop and pick up some shoes that fit over the AFO's. Size 8! I guess that makes up for his teeny tiny feet! (I think they are really size 3). But they fit pretty well over everything.
I am actually pretty psyched that he has these now. They look great, they help him. AND he likes being in the frame - more pictures will follow.

1 comment:

  1. My heart is pounding reading this one! Oh, WOW!! Standing!! AFO's!! I love the rockstar leg warmers. Kingsley wears them under his splint and I find them way better (cuter!) than the white sockette things they give us with the splint. ;) The picture of him looking down at his tiger made me LOL!! So cute! GO NICKOLAS!!!!