A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Tuesday, July 29, 2014


Nickolas had some visitors today.

We got him into a wheelchair and he was good to go. His IV was disconnected so it was just the saline lock. We got him into his Ninja Turtle PJ's and he was ready to leave his room.

He wasn't even shy about being the centre of attention.

He had been waiting for these visitors for weeks. Jennifer and Taylor, Emma and Mason, Katheryn and Zivah. Even Zivah's dad was there (working).

We went down to look at the water and try to eat. And throw money into the fountain.

Nick didn't eat anything, but he had fun.
Didn't get sore, didn't get tired.
The ultimate distraction!

Katheryn missed her brother as well, and Nick missed his sister.
She kept sneaking him kisses

After about an hour we went back up to the room and said good-bye.
Kyle and Katheryn stayed for a bit longer.

Katheryn read a story to Nick, and then they had to go home too.

Nick said he didn't have much pain (we've been doing small, medium and large to measure pain, using distance... like with thumb/finger and big like arms outstretched).

He wasn't very happy that Katheryn was going home and he wasn't.
But after some more Tylenol and a freezy, and a promise that I was staying with him and we should go home tomorrow and he was a little better.

I had, had a lot of concerns about being discharged so quickly. But really, seeing how great he has done through the day. I think that if we didn't have all the bleeding last night, and were able to do the out-of-bed part of the day through the night and didn't have all the pain, we would have been good to go.

But with the bleeding and poking at his belly, and pain that was last night and this morning... Even his cath volumes and appetite weren't that great until about 7pm tonight.

I am glad we are staying the extra day.

And there is lots of teaching to still do. I don't even know how to care for the MACE yet!

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