Smiles

Some smiles just because

Because sometimes it is fun to share your seat

Because scarves are cool

Because being a Beaver AND Thor is very serious

Because it is a gorgeous day

 Because dressing up is fun

Because sometimes you just need to ring the doorbell and wait

Because today was a great day

Because what better way to fall asleep than a smile on your face

That feeling...

I have that feeling. That feeling that all is well and good in the world.

I think it is a combination of the beautiful weather I sometimes can catch between the rain clouds. That Nick is on track and doing some work and we are seeing progress, Katheryn is blooming into a big girl, and I haven't been too crazy busy. Oh and we've been essentially illness-free for the last month or so!

But here it is.
Happiness.

The belief that everything is right in the world and that we are right where we are supposed to be.

Too often sometimes I write about things that are bothering me, as an outlet for the negatives of spina bifida (or just life in general). But here I am, here we are. In a really good place.

I don't really know what has changed, probably nothing. Yes we still has the issues we will always have (constipation, worry about the future, fitting PT in daily life, fights with insurance companies, sleeping, eating, cooking, ect).

I've also been working on my Spirit Wheel Walk Run and have been spreading information about spina bifida and showing off my beautiful kid! I've actually had a couple people say - he doesn't look like he has spina bifida. EXACTLY!

It gives me a great feeling.

But today, right now and for the foreseeable future - we are perfect, we are happy, we are here.

(and fyi - that is a sunburn that Nick has on his face - bad mommy didn't even realize the sun can burn in April! I had one too)

It's Back...

That feeling. You know the one. Where things are just right. You smile a little wider, you stand a little taller and you see the world a little brighter.

I'm not really sure why this feeling appeared. I didn't quite know that it was gone, but with the stress of the shunt, the continuous snotty noses and coughs, not sleeping and always having a messy house got the best of me for a good 6 weeks or so. But not today.

Today things are good, things are happy.

We had a very good physio appointment. Probably the major impact on my mood. I was feeling so lost about physio, about development, about where we were. I felt that we weren't moving forward but just stuck. And today I got to see the most amazing thing.


I got to see my baby boy on his feet, hands out, feet moving - towards me. Kim (the PT at Bloorview) was walking behind him, holding his chest and helping his feet move. BUT there he was. Something he was not able to do before the standing frame, gaining strength and getting a new angle on the world!
 [Of course I never thought to bring my camera]

But that's not all. Nick is ready to show off his new tricks!

Nick has started to fully feed himself! For a while we've been able to put finger food down for him, and he'll pick things up and put them in his mouth. But he just couldn't get his head (actually his mouth) around the idea of the spoon in his hand. But as you can see, he's got it!

He even took my spoon so he could do it all himself!

What a big boy!

 

We've been trying to get ideas of stuff he can do when he's standing. We've graduated up to 1 hour, twice a day. And he wants to grab more stuff. His FAVORITE thing to do is put everything in a basket. Doesn't matter what it is - it goes in the basket. Which is great when we are trying to clean up.

And he's piling blocks together and putting rings on a stick (or whatever that plastic thing is). Nick is hilarious - he does all this stuff and then clasps his hands together and is sooo proud of himself. Then looks at you for the appropriate appreciation of his work.

Another thing that Nick is busy showing off...

His whine. Moooommmmmy, it's tooooo far, I caaaan't reach iiiiit. Muuuuuummmmmmmy, can you pass me that cracker, pleeeeaaaase. (Paraphrasing of course).

I'm taking this new stage as a developmental thing. He realizes that he can impact my actions, and if he sits and 'looks pretty' or at least 'looks pretty pathetic' I'll get him whatever he wants.

OK I will admit that I tend to get things for him. But now that I realize he is doing this (I wonder how long  he has been doing this), it is time for him to get down to work!

AND I saved the best for last!

The 'walking' was pretty great, but this is all Nick. This is Nick doing all the work and just using mommy as a little support and encouragement. (Call it the mommy-crutch). Are you ready?

  

Did you see it?

He's standing! He's pulling himself up on me - but that is weight on those legs of his!

And not only is he doing it once - but over and over again! So that I was able to take a bunch of pictures while trying to hold the camera steady and get the gist of what was doing on.

And we start physio again in a couple of week, we have our workshop for speech therapy over the next month, we got all checked out from neurosurgery.

Nick is happy and healthy and things are going great. Katheryn is really talking up a storm. I am taking control of some aspects of myself that I've been effectively ignoring for the last couple of years (read: weight). And Kyle and I are on the same page for so many things lately. So that feeling that things are right in the world, it's back!

Back to Normal

Nickolas is completely back to normal. He is happy, he is playing. He is actually happier than he's been in a long time. More aware and more bright eyed. And I didn't notice anything when it happened.

He is eating up a storm again - but has started to be a bit picky with his foods. He refuses the breakfast I have been giving him for the last month or so, and won't just eat whatever is in front of him. I (grudgingly) suppose this is him getting older and developing his own tastes. But it was really nice that he would eat whatever I put in front of him.

We have also been able to get him up in his stander and do more physio again - another area I feel I'm failing him at! During December when we were all sick for 2 weeks he didn't go in it, and the week he was in the hospital and until he was back to normal we kept the stander in the corner.
(So he is in his stander in this picture - I just put his shirt over the frame because he was cold)

Now it's time to get moving again - literally.

Oh yeah.. There is my little boy! What a clown!!!

Up, up and away!!! Part 2

As promised in part 1 - here is Nick showing off how happy he is in the standing frame!

And of course mommy had to grab a picture of herself with her standing baby boy!

It took a couple of days, but Katheryn finally got to see Nickolas standing up too! She thought it was great! 

 She loved that he was (almost) the same height as she was! She could run around him and tickle him and hug him! Please ignore the messy faces

Just hanging out!

This is  how excited Nickolas has been getting when he's standing and playing! He doesn't like clapping (but he finally did it!), but he gets so excited he clasps his hands together!

He is like this for most of the time he is in the frame. We have him in it for 30 minutes a day, and can increase it by 5 minutes to a max of 60 minutes. He lasts the entire time, and we only take him out when the time is over.

He gets really tired when he's in it, just shows it's working.

The bonus (for Nick) of being upright? He's at a perfect level to do this!

Happy and Healthy Baby Boy!

We had our neurosurgery appointment this week.

2 hours to get there, 30 minutes appointment - no waiting, and 2 hours to get home. We did the subway experience, and I wore him down and then carried an umbrella stroller - which I didn't really need. Everyone in the subway thought he was very cute.

Anyways, we got the A-OK!!! Everything looks great, we'll see him again in 1 year and get another MRI. Sounds great! So I'm officially labelling my kid. Yup, he is a happy, healthy baby!

I'm blessed with such happy children!

Yes I'm blessed! I don't know how, but Kyle and I make really happy kids!

That is a blessing because sometimes I'm not too happy, some days I'm just really grumpy. I don't really want to be the mom that is yelling, but sometimes I'm ready to blow my top. But then I need to take a deep breath, and smile at my kids. Becuase we really are blessed to have them.
Some days I'm just really stressed. Wanting to get things done, have a clean house, healthy meals, time to myself, time taking pictures, time blogging and/or writing in my journal (I do both), time fundrasing, time with each child, reading time, physio time, family time, driving time and relaxing time. There isn't enough time in the day, and I'm really trying to concentrate on what is important and ignore the rest. Well, you can only ignore a dirty kitchen for so long until that makes its way to the top of the to do list.

Ah well, we are where we are. And I'm actually glad to be where I am. With 2 happy kids.

I don't know if I'm mentioned, but now that Nickolas is smiling and happy and laughing (omg that belly laugh!) Kyle and I look at each other and say "This is the child the doctors wanted us to terminate".  Maybe wanted us, is a little strong, then again maybe it isn't.
This happy go lucky child who just loves everything and flashes a huge smile when he sees you. Who hardly ever cries (except during physio or when he's hungry) and especially loves his sister.

2 month Birthday

2 months already! I can hardly beleive it.

It seems like its gone by so fast! All that has happened in his young little life. But he is doing very well. He is goo-gooing - he likes having conversations with his lion that I keep on his change-table. But then he jumps if I move it. He has also started smiling and almost laughing. Happy Happy Baby!

He is still moving well, Kyle and I have even seen him point his toes on his own, and he will wiggle his toes a bit when I'm touching them with my cold hands. All good signs. We will see the spina bifida clinic next month and see where we go from there.
I try to keep him stimulated, remember to talk and sing to him, show him different things. He loves looking out the windows. He really likes being in the swing and watching the mobile. Katheryn likes when he's in the swing too. She stands over him and leaves her juice with him.
When he's in the playpen she likes to climb in there with him. She is not allowed - and she knows it - but it doesn't stop her. She's starting to learn what 'time out' means because of it. But she hasn't sat on him (yet).

This week we are going to see urology. I'm still hoping for some good news, but he's started needing to be cathed twice a day again. I'm a little disappointed we are going backwards but we'll have more news from urology - that's what he does.
He's letting me sleep a bit at night. He'll go once for 6-7 hours (8 last night) between feeding, but then the rest of the time its every 3-4 hours. But that one stretch is really nice - usually from 8pm - 3am.