Thursday, May 17, 2012

Poop - Again

Warning: Poopy talk ahead!100_8935-001Well, if it’s not one thing going on it’s another.  We have been very pleased in the last few weeks as Mason’s bottom has healed wonderfully.  It was all due to his stools firming up a bit so he was not constantly dirty.  Now his body has gone completely the other direction, however.  He’s constipated. 

Constipation in Mason is different in some ways than constipation in a baby without nerve and muscle damage.  He is not uncomfortable that we notice, which is a plus but also means we need to be aware of his bodily functions.  He never strains and attempts to poop.  He simply doesn’t poop.  If he happens to be upset during a diaper change and cries hard the stool sticks out a bit, but the minute he stops crying and relaxes it disappears back inside.  (I told you there was poopy talk.)

After talking with several doctors, both the local pediatrician and the many specialists at Children’s Hospital in the Myelo Clinic, we’ve come up with a treatment plan.  The myelo clinic assures us this is normal and will be a lifelong issue.  Lovely.

Step 1: Clean him out.  Did that yesterday with an enema.

Step 2: Add 1 oz of whole juice to Mason’s daily diet.  Hopefully this will soften things up for a while, until he begins into solids.  It may not.  We’ll have to wait and see.

Step 3: When the juice fails to get things moving we will use glycerin suppositories in his bottom.

Step 4: When that fails we’ll add a daily dose of Miralax to his bottle or sippy.  That will become a regular thing pretty permanently.

Step 5: Gaining ‘social continence’ is the final thing to work on, and as that is years away I’m not even thinking about it in depth yet.  It involves regular enemas to clean out so he’s not having accidents during the day.  Fun.

The chance of Mason ever potty training is pretty iffy because of the extent of his nerve and muscle damage.  He’ll substitute cathing and other routines (like the enemas) to achieve a similar continence, or that’s what we assume for now.  Like anything, it’s another wait and see.   

In Other Areas

Mason is a delight.  He’s a chunky bundle of smiles and giggles.  He’s beginning to chew on things if they manage to find their way into his hands (blankets, toys).  We’re diligently doing our daily physical and occupational therapy exercises.  We’re also counting down to July when we can have our daytime hours filled with naked baby toes and just use the foot brace at night.  9 1/2 weeks.  67 days.  We’re trying to find ways to keep his feet cool as the weather warms up but it’s just not easy to do when he has to wear thick, cushioned socks and leather shoes.  Any ideas?


  1. I can't help but be glad that you're sharing all of this information . . . it's got to be a blessing to moms in a similar situation.

  2. Have you tried wool socks for summer? I know it sounds like they would be hot, but they are much better and more breathable and comfortable than other socks. My favorite brand is Smartwool, and they carry socks for babies: Smartwool for Babies.

    I love your blog. So glad I found it!

  3. my son was so hot in his that he would constantly have heat rash, so it is not pretty but you could take a drill and drill small holes around the base of his shoes...above the soles to make them more breathable, we simply cut the toes out of one pair of his since he didn't need support on his toes. Like I said it wasn't pretty but it did help his skin. That has been an important lesson in our journey, never underestimate the importance of healthy skin in these kiddos that do not feel things the way we do.

  4. My son has the same poopy issues. He didn't have any nerve cells at the end of his colon. Sigh. Enemas are interesting! I found that once they are bigger, it was easiest to do at the kitchen sink. (I know...kinda gross). But then I'm standing and not hunched over. The butt goes over the sink and everything just goes down the drain. After...everything gets swabbed with a few Clorox wipes. son is 3 and I feed him the Myralax with yogurt. I just put the powder on the yogurt, and spoon it to him. Then I know that he gets all his medicine...because sometimes he doesn't drink and I can't make him. Good luck!!!

  5. My cousin was born with many of the same issues you are dealing with in Mason. This is still a ways down the road for you but I'll pass on what they 'accidentally' learned with him. As a tween, he loved to be in a swimming pool and that was where and when he potty trained himself. . . I don't know all the details, but I know his parents would have paid for their pool over and over after seeing his abilities and independence in that area. You are amazing - thanks for sharing all that you do.


Thanks for commenting!

Note: Only a member of this blog may post a comment.