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.

Finally a post! and an anniversary

First of all I want to just say that I have not been ignoring my blog. I’ve hardly posted anything in the last 2 weeks, but in the meantime I changed my photos and layout. AND I’ve been composing blog posts in my head, along with taking lots of pictures for various posts. And I have been editing 3 posts that are just not ready to be published yet.
FYI when I finally post those - I'm going to adjust the dates so I don't have 3 or 4 posts all in a row - so look back at the end of November.

So those are my excuses and I’m sticking to it!

In the meantime I’ll leave you with a couple of pictures.

If I ever need to think about how far we've come - this is definitely proof!

We just celebrated our 1 year anniversary of Nick's shunt placement (at 3 weeks old). I blogged about it, but Nick was home for 5 days before we were headed back to the hospital to be readmitted and to have brain surgery in the morning. I remember it like it was yesterday...

In the scheme of spina bifida related surgeries, the shunt placement is probably the easiest, but the most stressful. Alot of stories of shunt placements are just like ours, finally getting home, getting settled and then needing to return to the hospital. The actual surgery only takes 1 hour. But I learned that a one hour surgery does not equal a one hour wait time. I waited for 3 hours in that horrible waiting room, exhausted and worried and just waiting for Nick's name to appear on the computer screen before we were told he was in the recovery room. My father waited with me. I probably would have been a mess without him.
We did find out that alot of the waiting time was trying to get another IV in Nick (he went through ALOT of IV's). But at the time I had no idea. Now I know for next time - because with spina bifida there is always a next time. I really didn't like his shunt scar - now it's covered by hair and no one knows it is there. And Nick bounced back so well from the surgery.

We were told that if he can go 1 year without a shunt revision (needing to change the shunt - usually because it gets clogged or infected) then chances are it would last. What last means, I am not quite sure. But we had it a year!

O Christmas Tree…

Every year we pick out the most beautiful Christmas tree. And after we defrost it’s time to decorate!

I don’t really mean we. This is more of a mommy job. Kyle is in charge of putting up the tree, lights and angel/star (depending on who’s year it is) and he brings up all the boxes of Christmas stuff.

Katheryn liked that we had a TREE in the house! And playing with the branches that were taken off.

Then I take over. Decorating the tree, decorating the house, listening to Carols and teaching the kids all my favourites.

Katheryn thought the tree was great! Especially when we put all this stuff on it! That she can pull off and hide all around the house. At the moment we have most of the decorations on the top 4 feet of the tree, not so much on the bottom 3 ft.

And Nick is happy to play with whatever he can get his hands on! And by this I mean crawling over to get whatever he can get his hands on. He is army crawling all over the place! And sometimes getting his hips and knees helping as well.

So it might look  like Katheryn is helping to decorate - but really it's the other way around. She LOVES those candy canes! I've actually taken off the hooks so she can carry and collect them around the house.

So this is the finished product!

 And a couple of really happy kids! Even if they do look kinda goofy in these pictures!

Christmas Traditions

I've been thinking alot about Christmas traditions and the kids. At first thought I would say we don't have any. But this is as we come back from picking and cutting down our Christmas tree. Something we've been doing since I was a child and something we did the first year with Katheryn.

Last year was a complete Christmas write off. We did not have a Christmas tree, we hardly decorated for Christmas. Nick turned 6 weeks old at Christmas, we had spent 2 weeks and 4 days at the hospital, we had nurses and all kinds of people coming to the house. I just didn't have time or energy to do Christmas. AND we already knew we were staying at my in laws over Christmas. So last year we really didn't have any traditions. And the year before that was Katheryn's first Christmas. Hard to believe.

So here is our first Christmas tradition...

Getting the tree.

So when you go to get a Christmas tree, it is important to dress for the occasion...

First we have to get warm, and cute

Then out comes the sled (snow is not necessary - as we found out). 

Katheryn is all ready to fill in as a sled puller!

And we are on our way!

Then we find a tree we like. Or a couple of different trees we like!

Katheryn found one she likes!

  

And the decision is made...

Katheryn is ready to help!

 (note the keys in the grass! Luckily we did too!)

 Katheryn did find the only patch of snow in the whole place! 

We are ready to go!

Katheryn's turn to be pulled!

 This tree hunting business is tiring!

 A great way to get ready for Christmas!

Thanks to my parents for coming and help with the kiddie wrangling!

So we do have some Christmas traditions, but I think we are still in the rookie period.

Mommy the Educator

I find myself in a great position to get some valuable information out about spina bifida.
And I LOVE it!

I just returned to work last week, I work as an obstetrical nurse in a labour and delivery unit. Being back at work I have everyone asking me how Nickolas is doing. I wanted to be able to say more than just "great". Which he is donig. Every milestone is dependant on walking that I wanted to be really sure that I didn't talk about what he wasn't doing. Nickolas was very nice and started to army crawl, so I could talk about what he was doing.
I had a couple of people (who didn't know about the SB) ask if he was walking yet. "No, not yet, it'll still be a while, he was born with spina bifida". Then I get the sad face, and 'I'm sorry', I am much more able to say "Don't be, he is such a happy baby he doesn't care if he has spina bifida." And Nickolas will walk, just not yet.

A couple of times I find myself educating other health professionals. And having them learn something. I only hope that the next time any of the obstetricians I work with have someone who's baby is diagnosed with spina bifida they will think of Nickolas while they give out their predictions about quality of life.

But I've had other opportunities to educate as well.
I got to speak at a college to a group of PSW and RPN's about our life with spina bifida. I explained about spina bifida and all of the stuff that goes with it. Most of the material I got from my other blog http://www.aboutspinabifida.blogspot.com/ and then just talked about it. About our life and how things were, our day to day, the fact that Nickolas has all of these diagnosis' but he is still healthy and our lives have changed but not drastically.
Everyone was very interested (of course - attendance was mandatory) and they asked alot of questions. I was very happy that I had the opportunity. AND we all wore our REDEFINING SPINA BIFIDA shirts.

They also got the see the kids in action. The good thing about being a guest speaker is that certain things are overlooked. Like having a 2 year old running around the classroom, and doing half of the class with a 1 year old in your arms. But this is my life, hectic but enjoying ourselves.