Under pressure (sore)

Just before Labour day weekend Nickolas came home with 2 large blisters on the top of his left foot. This is the foot he has less feeling in, but he still has feeling on the top of his foot.
Within an hour of me seeing it, the blisters had both popped leaving a awful looking open sore behind. I immediately pulled out my box of bandage supplies

This picture was taken after about 1 week. The toe one is actually healed in this picture, it was smaller.

We've been pretty good with skin so far. So it was kinda a kick in the face to have to deal with this. It's amazing just how fast it happened. I had just assumed that because Nickolas could feel his feet that this wouldn't happen.
He can definitely feel his feet. Every time he is on the potty I'd take a look. So that Nickolas kept screaming at me "No mommy! Not my foot!"

I had cream on it, then a band aid, then so I could put his shoes and braces on (luckily the AFO's don't rub against this spot) I put some gauze on it for cushioning and taped it all up.
But it's on it's way to healing well.

Nick is a boy and boys get dirty. I taped a sock to his foot to keep the dirt off of it.

It hasn't impacted his walking at all. And we've put him in some crocs just in case things rub a bit.

I'm just amazed at how fast it all happened. And this is on area he can feel. Everything I have talks about skin breakdown and being vigilant (and I thought I was) but now I can really see how one little sore can get so big so fast.
I'll be so happy once it finally heals (we are heading into week 2)

 

Stepping again

We went out to Bloorview this morning and got Nick's orthodics all fixed up!

Very high tech way to figure out where the AFO was rubbing. He put lipstick on Nick's heel, put the AFO on and voila! Nickle sized lipstick mark on the AFO!
So that got adjusted.
Nick also got some cool blue straps (instead of white ones).

These AFO's have given us trouble. First bruising at the top - so he has some blue padding to protect from that, then some red marks on the toes - again some blue padding, finally twice we've had rubbing on his heal.

Leslie (our orthodics guy) said that if it happens again we'll probably have to fit him for a whole new set of AFOs. I don't know if I'll be upset about that!
I actually already have some ideas for a design.

One Step Back...

Nickolas has been doing so well with is walking. Looking at him walking with those canes still amazes me! I’ve been showing everyone the videos. And when we are at home we can’t keep him off his feet! He stands and climbs over everything!

We had some issues with his AFOs in January, one of his braces was slipping off and he had a dime sized red spot on his heel. We noticed it on a weeked, So we kept them off until we could see his orthodics guy during the week. Luckily we were able to get in and see him quickly.
I can't find my post - so I guess I didn't blog about it.

So Nickolas got a break (in January) from standing and walking until we could get it worked out.

It happened again. Saturday morning he has a nickel sized red spot on his heel – same place. Same issue. This week his AFO has been slipping off. We look at his feet every night while he’s on the potty, but it wasn’t unitl Saturday morning that we noticed it.

Luckily we are able to see orthodics Monday morning (love people who answer emails on Saturdays while they are off on vacation!) So no AFOs, no walking in the walker.

I do not say no standing – because Nickolas is taking that in his own hands – or feet.

He won’t stay off them!

Nickolas has been standing without his braces for a while – usually in the bathtub of all places. His ankles are obviously weak and it really makes me cringe, but he can get up there and wants to get up.
This was taken last fall right before a bath.

He still goes over on his ankles, and it still makes me cringe – but I can’t force him to stay on the floor.

It’s hard when Nickolas is asking for his shoes and I can’t put them on him!