No Day like a Snow Day

So I'm a bit late posting this. This was our weekend a week ago, when we decided that we had stayed in the house too long, and would go out and play in the snow. It had finally warmed up to a -5C.  So we headed off to play with cousin Madison!
Nick was less than impressed with being all bundled up in the snow.

The original plan was to go sledding, but the kids are still a little young for some hills. So we just pulled the kids around the backyard.

I got this perfect sled for Nick that has nice high sides, and a seatbelt. And because we've lost his snow pants, he is piled high with 3 blankets, 2 pairs of pants and lined splash pants. I think he has on Katheryn's pink, red and purple gloves, and the hat he hates,

We were outside, with the snow coming down. And Nick decided he had had enough, and the adults decided to agree with him! Katheryn isn't that happy anymore - but Madison (my niece) is still having a blast and hamming it up for the camera!

Now that everyone is all rosy cheeked and rosy nosed we headed inside to run around. Nick has decided to all of a sudden become a picky eater, boycotting any type of fruit or vegetable that isn't banana's decided that the plastic pineapple was still ok to chew on!

Don't know if I'm just asking for trouble writing about a snow day 24 hours before we are getting a snow storm.

We need to talk...

OK we really need to talk about some things. Trust is very important aspect of our relationship and I really feel that you have failed in that department. It is something that we both have to work on and I'm not sure if I'll be really happy until we reach that point in our relationship again.

First of all Kyle and I are great, so are the kids. So who am I 'talking' to? The shunt.

Don't call the men in the white coats to come and take me away... hee hee ha ha ... yet.
My other SB moms know what I'm talking about (I hope).

I feel a bit like I need to get over this. In the range of things that could happen (and will happen) a shunt revision is a walk in the park. (OK Maybe if that park is Regent Park at midnight!) But it just seems to have shaken me and what I thought I knew.

It was one thing I thought I had a handle on, one thing that I knew was there, but didn't really care. It was working, we'd had our year anniversary, we could breathe a little better. Hey I was even measuring his head only once a month! Now we are back to every day.

I guess I am just being naive that it's something I didn't have to worry about. Just one more thing I can stick my head in the sand about. Wow I'm full of metaphors today...
I am back to that gibbering mess where every little cry or sleep has me thinking SHUNT! OK I might be a little hard on myself here. But that is certainly what it is feeling like now. I feel like every day I'm thinking how spina bifida sucks, all my posts have been complaining and negative. Where is the positive?! Where is the hope and dream and this is not that bad! I guess it's there somewhere.

(FYI I put him there - he's not in the pulling up stage yet)

And I'm just not sure how to get past this. I guess time will tell. But what will happen in another 13 months? what will happen in 2 years (apparently the average age of a shunt)? Is there ever a time I can stop worrying about the shunt?! Worry about when it is going to fail us again. Stop trusting it!

So in honor of promoting a trusting relationship I am thinking of names. No I am not crazy. Men can name their ... um ... peter's (or at least tv says they can). So why can't I name Nick's shunt?
Except I am totally overthinking this! I have a couple of names in my head, but not 100% sure on them. It's not like it's something I have to imagine myself yelling "X time for dinner!"
What I've been thinking - considering this is shunt #2, is some B names. But I'm pretty boring, so I have Bob, Bert and Brian. I can totally imagine myself saying/thinking "Oh that Bert, is he acting up again?"
I'll say it again. I'm not crazy.

Questions

Am I doing enough?
Is there more I can do?
Why can't he do this, or that or something else that I see other babies with spina bifida doing, who are at similar levels.
Should I try to get him more equipment?
Does he need more equipment?
What are we supposed to be doing with physio again?
Is that enough? Too hard? Too easy?

Will he ever do this? do that?
Why can't he do it now?!

Am I babying him?
How should I push him harder?
Am I missing something?
Should he be doing that?

Are we reading enough?
Are we playing enough?
Is he sitting too much?
Has he crawled enough today?
Is he getting enough stimulation? Is he crying because he got too much?
Should we go out more?
Are we sleeping enough? Too much?
Is he eating/drinking enough?
Did he get all his fruit/vegetables/grains?
Did he get all his meds?
When did I cath him last?
What was his poop like?

Why isn't he talking?
Should I be doing something more?
Just say mama or dada or doggy! Please.
Do I talk enough with him?
Should I have gotten him an assessment sooner? (we go Feb 1)
Should I get more therapy?

And that is just all about Nick! I'm not even going to get into Katheryn or me or Kyle or finances or cleaning the house, cooking dinner, laundry, exercise, diet or when was the last time I went out with friends, or with Kyle. And poor Sammie (our dog)!

I guess what I should really be asking is:

Is he happy?

Is he loved?

Are we all?

Well, case closed. (for now)

Oh No! Bath Time!

I have a bit of a confession. Nick hates his bath, he usually cries the whole time and so I am usually rushing through everything as he cries away. But he has to be clean. So as I'm trying to wash his hair and wash all the shampoo out - trying to keep it out of his eyes - he is really not a happy camper.

Katheryn on the other hand LOVES her bath, she would live in the bath tub if she could! Even when the water is cold, I still have to drag her out of the tub.

Today I tried something different. I actually wanted some bath tub pictures for a photo book I'm doing for Nick to look at. So today was a more relaxed environment. No hair washing, just water, bubbles, toys and fun.

As usual Katheryn loves making him laugh. Splashing and kicking and giving him toys. He really didn't like getting water kicked in the face - who does?!

But after a couple of tears and encouragement that no, he really was fine.

He cheered up!

And surprise, surprise, Nick started to really enjoy his bath. He played with toys and watched what Katheryn did. And I got smiles and laughs. Something that I am still watching (is he back to normal - did he smile/laugh more or less before).

So hopefully we are in a new age for bath time. I remember that Katheryn went through the same phase of hating her bath. So hopefully he is entering his bathtime-isn't-that-bad phase.
Because bathtime that looks like this is really fun!

And afterwards some warming up with Pooh (ok that just sounds wrong). Winnie the Pooh - actually I think it's a tigger robe.

 And then bundled up in a tracksuit and play with his toy in front of a warm fire.

Does it get any better than this?!

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!!!