Thursday, March 7, 2013


Any of you that know me enough to be blessed or cursed to have to talk to me, even just occasionally, are well aware that I am a little obsessive (and that might be putting it mildly) about Lucy's poop. When Lucy turned one, before we knew anything about Rett Syndrome, she started getting constipated. I spent all summer trying to manage it with diet and extra fluids, but I eventually had to seek pharmaceutical assistance. It just wouldn't come out! And when it finally did, I often had to assist it and it would be like a rock. She started on Mirilax and that was working for quite awhile, but we eventually also had to add a daily dose of liquid senna. The Mirilax softens it and the senna gets it moving. Things have been going fine. However...she hasn't been able to go since SUNDAY!

This poor kid! I don't even know if she can push when she wants to. I know that she can push, but I don't know how much control she has over it. And at this point, I think it is stressing her out and she is afraid to go because it might hurt. I know this is gross for some, and you might think, "why would Julie think we want to hear about Lucy's poop?!", but this is life with Rett Syndrome. It is life with any disorder that involves apraxia, low muscle tone, and not being able to walk. She will struggle with bowel and digestive issues always.

I have given her a little extra senna and Mirilax, mixed some puréed prunes into her cereal, have children's herbal tummy tea brewing, put a heating pad on her belly, rubbed her belly in a clockwise motion (because that is the direction of digestion), bicycled her legs, put her in her stander, sat her on the potty, and nothing! I believe it will come today, and when it does, it's going to be a doozy!

In college, I spent a summer working at a camp for people with spina bifida called The Woodlands, near Pittsburg. I had to learn to give enemas and administer catheterizations that summer. It made me so grateful to be able to move my bowels and empty my bladder on my own, and I have never forgotten to be thankful for that. I certainly don't think of it as often as I did then when I cathed people several times daily and gave enemas at least weekly, but I still remember how frustrating it would be to not be able to go on my own. I think about that with Lu; like I said, I don't know how much control she has on pushing, but at least her body, although often inefficiently, will eventually move her bowels...I am thankful for that. And she almost always tells me she has to go, (if she's awake) and then goes on the potty..."You take the good, you take the bad, you take them both and then you have the facts of life!" (Hahahaha!) Anyway, hopefully Lu poops today!

1 comment:

  1. Not that dealing with constipation -on any level or whether it be a baby or child or even an adult -is a humorous thing but I confess reading your post did make me smile today. Smiling because it brought back a lot of memories for me of similar problems we had here too with both the grandkids! One had bm's so huge -I'm not lying (or joking) here -that it plugged the commode! And rock solid too! We used to comment frequently about the size of those stools and wonder how on earth they ever got passed in the first place because the kids -neither of them -were big then nor are they now, other than both are fairly tall though for their ages. And probably most anyone who has had to tend to a child or children with special needs of any kind -physical or disorders like autism where the comprehension levels may make explaining and assisting kids in these basic daily needs can be hampered -has experienced worrying about keeping things moving as smoothly as possible! And sometimes too, one does have to have a sense of humor about it as well. Hope something unlocks the gate for her soon as that is frequently a very difficult and painful experience at virtually any age!