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!

Saturday, July 25, 2015

Learning Independence

We went to the first half of our SB clinic last week and met with Dr Church, Nick's Developmental Pediatrician, who we absolutely love!

Everything is going well, but we left with a couple of goals. One was for urology (and I will update that next week). But one of our goals was for Nick to gain more independence.

And that means cathing himself.
Let me step back for a second to explain what this is (just in case you don't know)
The nerves affected by spina bifida include the nerves that go to the bladder. Nick's bladder isn't able to empty itself (except for spasms) and we have been emptying it for him with a catheter. The nerve damage also means that he doesn't feel his penis or his bladder. Which is good in that catheterization doesn't bother him at all.

This is something that we have been trying off and on. We were making some headway in January where Nick would actually touch his penis. This might seem very basic, but it is a very big deal for us.
You know how you hear that boys when they are children are always touching themselves? Not even a little bit. He doesn't feel it is part of his body. When I try to get him to touch it, he makes a face and scrunches up his fingers like he just touched something gross.

In January we started slow. But when he stopped wanting to help I didn't want to push him.

When we saw Dr Church she thought that it was time to seriously try again.
Nick has the dexterity to do it. We talked to him about and he said that he wanted to learn how to do it. I was concerned about a bladder infection, but she said we could tolerate an infection for him to learn how to cath himself.

It took 2 days (4x a day) and Nick could do everything himself. Start to finish. He needed a bit of help organizing himself. And I kept having to stop myself from helping him too much.
Nick's aim isn't perfect (and makes me cringe sometimes) but he wants to do this! But he does get frustrated if he keeps missing.

I am amazed at how quickly he picked it up. But I guess he has seen it happen at least every day for 2081 days... That is lots of time to learn.

Nick was so proud of himself when he did it "All by myself!"
And I was so incredibly proud of him as well.

This is also a great step towards independence. It means that when he is at school his EA can assist or observe his cathing, while he can do it all himself. One step to be more ready for grade one

No comments:

Post a Comment