Day 4 - Out of bed

It was Monday, which meant that we had some great things planned for today!

Physio was going to be coming today, the dressing was going to be coming off and we were going to be one step closer to discharge. But first there had to be some eating and drinking so that we could change the IV over to a saline lock.
Nick is not the best drinker at any time, so we really had to work on drinking. But after breakfast that pesky IV line was gone!

I also put up Nick's All About Me poster he had made for school last week. I thought it was perfect to show all about Nick

To help to prepare  for our  first goal, getting out of bed, I wanted to get Nick propped all the way up. So it was time to pull out the lego. At first his back was hurting becasue he was up higher than before. But pretty soon he was distrated by that

And then I had him up at a full 90 degrees, and had him reaching and leaning forward.

He didn't have any problem leaning forward.

That got us all ready for the next step!
Perfectly timed, physiotherapy and occupational therapy came to see him. There wasn't so much from an OT perspective, he is still guarding his IV hand, but he is moving it and using it (and putting together lego with it)

But we got him sitting at the side of the bed. The transition was sore for him at first, but if he could get past that part he was able to sit and help us swing his legs over the side of the bed.
We did try to stand at this time (which is why his braces are on), but it was too fast and he had too much pain. So we sat back down and PT was going to come back and we were going to pre-medicate so we could get more work done.
I did have a quick vision of going home tomorrow if he could stand, but it was just too fast for him

While we waited, I pulled the lego back out. He could tolerate about 15 minutes of sitting like this before having to sit back down.

But over the course of the day we got our finished product!

 Nick also had a special visitor. Jenna, another adult with spina bifida came for a visit. She knows 5C very well and has had multiple surgeries as a child and had lots of support for Nick.
He was tired from all of the work he had done so far, but he did get a visit before passing out.

But he looked so cute sleeping

Grandma and Papa Bartley came for a visit too

They were here when physio came back in the afternoon. We got him standing up, it still hurt, but not as much in the morning, and he was able to sit at the side of the bed easier as well.

But the standing was hard. He had difficult standing up straight and kept hunching over and leaning his bum. I guess that is what happens when you haven't been out of bed for 5 days!

We also did a little bit of walking around the room. I'm not really sure why he grabbed the walker like this.

He needed a lot of support, and it was more shuffling his feet while she was holding him upright, than actually walking, but it is a start. And I have to keep telling myself that. It is a start.
My heart broke a little bit seeing how much he was struggling to walk. But I am sure that tomorrow will be better, and the day after and the day after. One step at a time, for real.

Nick hadn't been eating very well, and threw up the little lunch he had, so we gave him some zofran, which settled him enough that he snacked.

And this is how he ate dinner.

His dressing came off this morning as well. His incision is looking good. But it is big (about 3") And he is very worried someone is going to touch it, but with a little distraction he was actually really good with the dressing coming off. 

Sorry if it grosses anyone out, but it looks good. Now that the dressing is off he isn't really bothered by it.

Every day he is getting better. Tomorrow I am hoping he will be able to stand with less pain and take independent steps in his walker.
BUt here is his smile of the day

And this is how he is fighting sleep at 1030 at night (must be that nap recharged him!)

Retouch

I have recently found a great feature in my photo program.
The RETOUCH.
Have an annoying pimple - no problem RETOUCH and it's gone.
That dirty face but beautiful smile - RETOUCH!

Sometimes I photoshop a couple of pictures together - especially when I have 2 kids that like to look and smile at the camera at different times.
I generally use the old fashioned paint program, but this retouch lets me smooth out some of the edges.

Or to put some open eyes on my sister!

But then when I was going through some of my favorite pictures I was retouching other things.
First it was one of my favorite new years pictures - a New Years kiss!

Here is the original picture. I love this picture, but the marker (even 3 weeks later) at the scar just takes away from the picture.

I was going through over 600 pictures on the computer - and these are just my favorites! To run through as a background or screen saver, so I was fixing up the colours and rotating them ect. And of course using RETOUCH to take away those pesky distractions.

That's when things took a wrong turn.
I got to this picture.
It is from last summer, look how happy they are!
(Actually Nick's shirt says my mommy is totally going to blog about this)

And I brought that little RETOUCH arrow down.

Down to that distraction. It's not a pimple, or bits of food.
That ugly, ugly belly scar. I hate it, the back one, I'm good with, but I don't like that belly scar...

And there is his beautiful tummy sans scar.
It felt wrong right away. And I immediately changed it back.

Food and pimples yes, but scars. A definite, definite no!
Scars are permanent, scars are part of who we are (the same with mole and birth marks - I don't want to retouch those).

Because I love this picture. This is my son, he is strong, he is whole, he is perfect.

I don't feel that this retouched picture is more perfect. Where is the scar?! I really don't like this following picture at all. It is flawed. It is just wrong.

I never, ever would have RETOUCHed a back picture, except for the purposes of this blog.

Pictures are supposed to show who we are, they are supposed to show joy, sorrow, laughter, boredom or just plain life. I don't need a RETOUCH button for my life (just maybe for some pimples)

Clinic Time

We haven't been that eventful in the Ridding house! Seems like I haven't blogged in ages!
We had our spina bifida clinic again on Friday.
Pretty unexciting - which is what I expected. Always a good thing.

We had actually been at Bloorview on Thursday to deal with a red spot that Nick had on his heal.
That red spot worried me. Nick's foot had been coming out of his AFO and Kyle had noticed a dime sized red spot on Nick's heal on the weekend. So no more AFO's, no standing, no walking and waiting to be able to see orthodics. But they hollowed out a bit more of the heal, added some padding and away we go!

Today was an actual clinic day. All good news.
Urology/nursing - kidney/bladder ultrasound, all clear, no problems, continue as we are doing, see us in 6-9 months
Physio assessment - all good, he is doing amazing
Ortho - no issues, all clear for 1 year
The only thing was that Nick's scar makes it hard to tell if his spine is straight or not just by looking. He also has a part of the scar that got infected and is all indented, the part that runs along his side and isn't red, it is actually indented while the rest is pretty flat. (Out of Nick's scar, this is part I hate the most, but what can you do?).
In the end, they think that yes, his spine is straight, but it's something to pay attention to.

The best thing about the spina bifida clinic was that I got to spend it with Shayna and her son Gage - who is absolutely adorable!!! (You might remember Gage as the baby who was born last May, and I got to be there).
Instead of sitting around waiting for everyone to come and see you, Shayna and I got to wait together and people pretty much just found us.
That was great!
I think every clinic visit should be like that!
We talked about getting a picture of the boys together but didn't get a chance to.

We had some time for Nick to play with the fish tank.
I have a video of Nick (slowly) wheeling his chair around the fish tank, but it won't load. So I'll try to load it for another post.
Nick likes the fish so much I thought it would be good incentive for him to stand at (still working on getting him to like simple standing at things). Needless to say Nick was less than impressed about standing at the fishies.

Once he got his balance and realized that no, he wasn't going to fall he got a little more brave with the standing. (Sorry for the lousy pictures, my camera's flash stopped working - something about not liking that last fall to the floor or something, electronics these days!).

 The clinic is divided into 2 half days. The morning is when you see the nurse, physiotherapy and get necessary ultrasounds. Then there is lunch, the physicians get the opportunities to review all of the tests and assessments. In the afternoon we get to visit with the doctors, get the results, get the plans and go from there.

At the end of all of this Nick and I still had one more exciting meeting (never thought I'd say that!). But I'm going to leave that for a new post!

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.

Photo Time!

I was looking over some of my favorite blogs - I have a bunch - and saw some naked pics taken of a 3 month old cutie - and I was inspired!
Out come the sheets, the towels, the camera and the smiles! (Not that the smiles ever go away!)

Here are some of my favorites:

Having Fun! - and look at that tooth!

Happy to be 'free'

ALL SMILES!!!

I wanted pictures that do not hide away from his scar. It is part of who he is - not that I want to showcase it. Wait a minute. I DO want to showcase it. His scar is just one testimonial of the surgeries and struggles that he has overcome in a short 9 months.

A website I've been on, I can't remember but I think it sells SB related jewelry, has a picture of her child sitting on a beach. It is a bum picture and at first you are shocked by the large scar, and then you think, wait a minute. This isn't something to hide.

So here is my baby boy! In all his glory!!!