Our week in Cincinnati

This is a pretty private topic for Nate, but it's also an important subject in the Spina Bifida world and marks a big change for our whole family. So I'll do the best I can in respecting Nate's privacy as well as letting everyone understand this challenge.
Because Nate has Spina Bifida, he gets constipated very easily and then has accidents. We have tried many, many methods of helping him stay healthy and clean, but nothing has worked. Several months ago I started hearing about Cincinnati Children's Hospital's Colorectal Center, which is the first and only place in the world that has a well staffed, comprehensive program that is 95% successful in helping children achieve bowel continence. It took a few months for the stars to align, mainly because this program requires you to spend over a week in Cincinnati. We did it this month.

Nate and I went by ourselves on a Thursday. He had to have a test that looked at his belly and also cleaned him out good. The next morning we went to an orientation, had a belly x-ray, and met with a doctor and a nurse who got us started on an enema program. About the trip itself, I actually really enjoyed it. Sometimes Nate and I go to his appointments just us, and I love that time. We spent the night in a hotel and had a great heart to heart talk about starting this potty program. He didn't want to, but we talked about all the advantages of it and he seemed to start to see the benefits. We agreed that now that he's six and getting ready for first grade, it's time to get him clean.

Friday evening we came back home after a really long day at the hospital, stopping at two pharmacies for supplies, and a 2 hour drive home. And then we had to do our first enema that night. It was a disaster. I couldn't get it to work, and Nate was so upset by the whole experience. We all ended up in tears, and we were unsuccessful to boot. We gave up for the night. The next morning we tried again, and this time, Nate was totally unwilling to cooperate. He was begging me not to do this to him. It was absolutely heartbreaking. In a moment of desperation, I offered to buy him an iPad, and he declined. :) I had to ask Blake to come home from work, and we convinced Nate that the problem the night before was me and that daddy could do it better. He finally agreed. We had to do two that day and one more Sunday morning--this isn't typical, just an effort to get him cleaned out good.

On Sunday we went back to Cincinnati, this time with my mom and Georgia with us. Monday through Friday, every day we did his enema first thing, then went to the hospital for a belly x-ray and gave a report to our nurse about any accidents, how it went, etc. After that, we could have some fun.

We went swimming in the hotel pool a couple of times. This pool was freezing!!! Nate didn't care--he was a little fish. Georgia sat on the top step the whole time and had a blast.

We went to the zoo one day, and it was HOT!!! So miserably hot. But both kids touched an alligator.

We went to the aquarium one day.

And Nate's favorite, of course, was the day we went to the train museum!

Here he is enjoying some hospital cafeteria pudding. :)

Every morning, it was a struggle to get Nate to cooperate with the enema, but we used bribery to coerce him. :) If he would do it without (much) complaining, he would get a special treat that day--a new "pet" from the gift shop at the aquarium, ice cream at the zoo, etc. Despite the fact that he didn't like it, the program was very successful! He was basically clean the entire week! Every day the doctors reviewed his belly x-ray, and a couple of times we tweaked what would go in the enema (saline and varying amounts of glycerine soap). I reminded him all week how nice it was to not have to worry about accidents.

We came home on Friday, and Nate is much less resistant to the enema program. We used bribery at first, but now just the prospect of getting to text with daddy while he sits on the potty is enough to get him to run upstairs. :) He has a blast texting poop jokes with daddy.

It's been a big adjustment for all of us. For a long time, we had hopes that we would be able to handle this issue with less ... this isn't really the exact word, but something like ... invasive measures. Something a little more "normal." But we know we tried everything and this is what has to be done now. For us, this is the new normal. It was difficult to watch him struggle with this at first, and it's so much easier on us now that he doesn't mind it. Still, it's been stressful. We've had to adjust to doing a one-hour bathroom routine every night. And in a weird, irrational way, it's felt like admitting defeat to Spina Bifida. But I know that defeat would be not doing anything about this problem and allowing him to stay in a pull up indefinitely. We're fighting back.

I can't say enough good things about this Colorectal Clinic. We wouldn't have known where to even start without them. They say we can come back in a year or two and try a different program. But for now, this one works well. If you'd like to read more about it, you can see an overview and more in-depth info here: http://www.cincinnatichildrens.org/service/c/colorectal/treatments/bowel-management/

I'm still recovering from last week, but I'm happy with how relatively quickly Nate and all of us have adjusted to the new routine. Progress!