Gracie's Special Need

Disclaimer:  This post is about poop!  You might not want to read it, but I have had alot of questions about Gracie's sn....and her sn happens to be poop! :)

Ok...Here it is.  I did not come to the decision to share Gracie's special need lightly, and I will admit that if the outcome of our Cincinnati trip had been different, I would probably not share.  I do feel, however, that when you are in the middle of adopting a special needs child, experiences from other moms is invaluable.  I know this from my own experiences with both my girls.  Please understand that every child is different and every file is different.  This is just our experience with Gracie.  So...here it is:

Gracie's file gave her this special need "megacolon".  Her file stated that she spent the first year of her life in the hospital, but there a no medical records from this time at the orphanage.  Her file stated that she was bowel incontinent and also had a low IQ test in it.  I will not lie...her file was scary to me!  I'm sure you don't remember, but we were racing her file with our paperwork.  We did not succeed.  She hit the list before we were ready, so the only way I could lock her file is if she stayed on the list for 30 days.  This did a couple of things for/to me.  First, I probably gained a ton of gray hair stressing over it.  Second, it gave me 30 days to read her file and gather all the information I could gather.  I did not think I could handle a bowel incontenent child, but I felt so strongly that she was supposed to be ours.  I was really conflicted about it.  During this 30 day period, I was able to ask questions of the orphanage.  I got a picture of her nasty scar...right on her tummy.  I also got the information that she was potty trained, but still wore diapers sometimes and that she pooped 5-6 times a day.  Hmmm.....  I was also able to speak to someone who had met her, and gave the report that there was nothing wrong with her IQ.  Finally, as I read her chart for the 100th time, I looked at the date on it.  It had been written on the day she turned 2.  This gave me much peace.  Wesleigh was turning 3 and still didn't have bowel control!  I decided, that day...if she was still on the list after 30 days...she was mine...regardless!  I now feel that this was all such a God thing.  Her file, being so negative, served 2 purposes:  she stayed on the list (even though her file was locked 3 different times), and it caused my faith to grow by leaps and bounds.

Fast forward to China...While we were at the civil affairs office on that first day, in the middle of everything, Gracie had to go to the bathroom.  She was in panties and told the director that she had to go, but there was definitely something not quite right.  Her stool was, and continued to be extremely runny and she had to go often.  Also, when she said she had to go...she had to go NOW!  Before we went to China, I had already decided that I would be taking her to Cincinnati Childrens to their colo-rectal center.  It was the best decision we made.  Before we got to Cincinnati we were able to deal with her need by learning her cues and also learning that any fiber in her diet (grapes, fruit, etc) made it worse.  She loves those foods, but I had to limit them greatly.  She wore panties mostly while awake and only had 1 accident at school.  Honestly, if it never got better than that...we could handle that. 

She and I spent 2 weeks in Cincinnati.  The first week was spent trying to figure her out.  What was her problem when she was born?  What is her problem now?  What can we do for her?  After a few tests that were not much fun, it was determined that Gracie was born with hirschsprung's disease.  Here's my version of what that is:  The nerve endings in Gracie's colon did not completely form, therefore there was a portion of Gracie's colon that could not function.  In China, they did surgery to take out the affected portion of colon.  The surgery was successful and although there are a couple of things that could cause some issues later (scar tissue, etc.), it's nothing we have to worry about now.  Her diagnosis right now is a hyper-motile colon.  Her colon works too fast, especially when you eat fruit, etc.  Our second week in Cincinnati was spent in bowel management...trying to come up with the right cocktail of drugs to get her colon to slow down.  They put her on Citrucel to bulk up her stool and Immodium to slow her colon down.  MIRACLE!!  I don't think the child had ever had a formed stool...ever!  She now goes about 3 times a day, and we don't have the "emergencies" that we used to deal with.  It's not perfect.  She has days that things don't go quite right, but those are very manageable.  I think as she gets older, that part will get easier and easier.

So what we do now...We are on a regiment of both medications 3x/day.  We have our routine down and it's easy.  I have to watch her closely because she is at risk for infections of the colon and could also flip to being constipated at some point.  I do not know if this is something that she will have to do the rest of her life....they couldn't tell me.  We feel very blessed to have had a situation that was resolved so easily and painlessly.  However, it wouldn't have mattered.  We would do whatever we needed to...she's ours...and that's what you do.

I, unfortunately, do not have much more knowledge about bowel issues than what I stated here.  In fact, I now know much more about poop than I ever wanted or expected to :)  If you have questions, I would be more than happy to answer them if I can.