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, April 30, 2013

A new normal

Cleaning house has been going....
I'm not sure if I can say well (yet), but I think it has potential.

It has involved a number of emails back and forth with our nurse. And some trial and error. And a couple of very large blow-outs. You need to laugh so you don't cry blow-outs. All I could smell all day was poop blow outs. Funny, right?
(Maybe now)

So I knew that we were doing something wrong.
And of course I'm a little bit ... lets say independent ... in my thinking and questioning and knowing what I want and how I think I should do something that I want. Like the bowel routine.

In my last post I discussed various sources of information. So I thought that I would share what I learned.

Timing is important. Specifically if you rush it, you will have blow-outs.
The internet-only information said "as fast as he will tolerate". Our nurse says "at least 5 minutes". And there is also the time for fluid to work that is needed.
So a little bit of timing changes and no more blow-outs.

I also found a research article explaining the process of what they are doing at the Cincinnati Centre. It reviewed what goes on during the week you are in Cincinnati, which we aren't going to be doing, but I thought it would get some basics down.
It did give me some questions to explore (they don't use cones, but foley for irrigation). And it helped me to understand some of the physiology of the spina bifida bowel. I gave a copy to Nick's pediatrician because he didn't know that much about the bowel program.

I've been keeping track of everything so that I know what is going on. I think it's the nurse in me - I always have to chart! I have dates, times, amount in, timing and results (just a check mark).
I'm told it takes 6 weeks, we are about half way there and I've learned things. A lot of zero's on my chart have me sure we are on the right track.

I am excited. I am trying not to be excited. But I can see it.
Big boy underwear.
I've been looking at them in the store. Pulling some off the shelf and then putting it back. I never would have thought that the thing I wanted to buy most in a store would be size 3 boys underwear.

So here we are.
It has been a change in our routine to spend 1 hour in the bathroom.
I can recite the backyardigans dvd we play by heart. But Nick is tolerating it well. It provides some one-on-one time for the 2 of us. And this is just the new normal for us.


  1. Just curious, if your pediatrician doesn't know much of Spina Bifida wouldn't be better to find a specialist for Nick?

  2. Nick has LOTS of specialists. But he also needs a pediatrician for more every day stuff (he actually has a family doctor for non-pediatric stuff)