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!!!

It's hard being a mom

It's hard being a mom.

It is hard being the mom that is supposed to realize when things are wrong.
It is hard being the mom who is supposed to identify when certain behavior is just recovering from surgery, a shunt malfunction, teething, getting older or whatever. That is asking alot of a mom.

When symptoms of a shunt malfunction are irritability, poor feeding and not as awake as usual and you just got home from shunt surgery and your child wants to be held all the time, not eating as much as usual and cries when you put him down. Is this something to call the doctor and rush back in for, or is it something that is normal for your child to do after spending 4 days in the hospital and now has a big incision in his head!

And I'm the one who is supposed to know what to do.

It can be very stressful at times.

Especially when Nickolas didn't show any of the classic signs that I knew that I was supposed to look for. Yes Nick was irritable for a couple of hours on the Sunday evening/Monday morning - but he calmed down and went to sleep fine. If it was shunt shouldn't it have continued? Did I miss this?!

Yes he had a fever once on the Tuesday afternoon, but no other symptoms. If it was a shunt the tylenol shouldn't have done anything. Did I miss this?!

Yes he had swelling at the shunt. Yes this is a symptoms - but it was the only symptom! And it would get better, he wasn't acting any differently, fontanel felt fine. Should I have jumped at this one earlier?!


I guess in the end things worked out. It just has me second guessing what I thought that I knew. It has me really hoping he doesn't get a fever with teething or a cold because I might be inclined to bundle us all in the car and drive to sick kids (about 60-90 min away) because he is teething.

Because I just don't know anymore! I feel absolutely clueless!

And I hate feeling that way!

I actually divided up this post into 2 - the happier part of it is next

Inspiration

Because some days Spina Bifida just sucks, I decided that it is time to share a poem that my friend Joanna wrote last year.

Get the kleenex ready...

For Jet

Most every day I feel so thankful for the life we live,

The many blessings we enjoy - the chance we have to give,

The sweetest little miracle with mischief in his eyes,

The lessons he has taught us have come as a surprise.

And yet this source of endless love - our sunshine in the rain!

This precious gift of joy - can also bring me the most pain.

It's a whirlwind of emotions when I look at his sweet face,

The beauty of his life - a perfect portrait of God's grace.

But paired with that - the struggles of the future we've been shown,

The worries and the fear that come with so much still unknown.

It's easy to stay positive when hard times pass him by...

But I know that there will be a day when he asks"Mommy, why?"

"Why?" to certain things that let him know he's not the same,

The medicines he hates or why he cannot join the game.

And then sometimes I think "if I could only know for sure..."

Or "maybe that won't happen..." Or "maybe they'll find a cure..."

But Maybe is a dangerous game that goes two ways when played...

And inevitably you find yourself in the "maybe-worst-case" game.

And that game makes things dark enough for doubt to creep inside,

And even in an empty room you'll feel the need to hide,

The sunshine is long gone and it has now begun to rain,

And a growing sense of helplessness brings out forgotten pain,

There's nothing left in your control

or if there is it's slipping,

There is fear of losing everything

you've been so tightly gripping,

Like waves crashing over you

you fight the urge to fall

You gasp for air that isn't there -

You feel no strength at all.

Lost, confused, angry, desperate

Reaching for a hand,

Something to hold on to as you fight to try and stand.

Then suddenly you feel you're being lifted from the deep,

You're standing at the top of what at one point seemed too steep.

What seemed to last forever, in a moment now has passed,

What came on unexpectedly, is over just as fast.

A peace grows into hope as you embrace the help you've found,

Then hope gives way to joy as Love and light shine all around.

Instead of drowning in the waves, you're standing on the shore,

The doubts that once had pulled you down aren't with you anymore.

What happened to the overwhelming loneliness and fear?

Were they never real? Could they just simply disappear?

No - they're just as real...and just as strong as they were then,

They can return at any moment should I choose to let them in.

Never - I may say - I'll never let in fear and doubt.

But everyone has days where they're just too hard to keep out.

So if you find yourself in waters just too deep to swim,

Nights too dark to find your path,

Fights too tough to win,

Instead of holding on so tight and sinking 'neath the weight,

Give up control you think you have

and trade your fear for faith.

Written by Joanna Penny ~ For Jet ~

Don't say I didn't warn you!

 

If you can still see, take at look at this little guy! Yup my Nickolas is back!

 

It's just hair...

Because I have always known that another surgery is inevitable, I have considered what I would do with Nickolas' hair when that happens. I know that in the scheme of things hair is really no big deal. In the range of things to be worried about, or think about hair, should be pretty low on the list.
But at the same time it gives me something to do.

I took off Nick's bandage today and I knew I had to do something. His scar, while over the old scar, is bigger, and he has a large bald spot now on his temple. The incision actually looks better than a year ago, nice little sutures instead of that dark marker and glue.

This was a year ago - at New Years, and his shunt was almost a month old. I didn't really take any pictures of it then, I tried covering it up mostly and it took a while for me to look at it without cringing inside.

But I'm glad that Nickolas already had his first haircut and that this wasn't it.
The first time Nick's haircut made him look older. This time I think it makes him look younger.

My original plan had always been to shave his head, take away from the bald spot by just taking all the hair! Then I noticed that Nick plays with his hair when he sicks his thumb. Well, I wasn't about to take away this coping mechanism just because I felt like it.

Then I noticed that Nick really didn't want anyone to touch his head. So any type of shavers were right out of the question. It was back to the old hand-held scissors and as short as I could make it.

I went to this task with a heavy heart. While I had thought about what I would do, I really didn't want to give him any kind of hair cut. We had already done this! It was fun, this was not.

First came Nick's first bath to try to get the blood and pink dye off of him. Alot easier said than done! The soap and water didn't do a single thing to get rid of any of the pink or red! Maybe if I scrubbed, but Nick was not having any of that!

So I just started cutting, one side of his head was completely matted and just a complete mess.

This was about half way. I had finished most of the good side and had to figure out what to do about the other side. If I was trying to make him look and feel better i couldn't leave that side.

I finally got the bright idea to try the Re-move stuff to get rid of adhesive tape. This worked very, very well. Unfortunately I only got one little pad and will need more. But for now I have a finished product:

I guess it just has to be a work in progress.
And it's just hair.