Malachi: In a Nut Shell

Things are going really well!  Blink.  Things are going very poorly :(  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat  Repeat ........

His bowel function, and ability to stool on his own, are completely dependent on these things:
* sleeping on demand
* eating at least every two hours (that's drinking a bottle eating), or on demand, which can be as often as every 15 minutes - boy do I wish I could have nursed him!
* eating lots of veggies and high fiber whole grain foods when his bowels will tolerate it, on demand
* being irrigated on demand

He doesn't eat anywhere but home sweet home.  Believe me I have tried!  He is simply too interested in the big wide world around him.  I don't blame him, but it sure does narrow our windows of time.  Skipping a feeding means bad things, very bad things.  He goes from awesome to terrible in a matter of hours.  We have become experts at grabbing 30 minutes here or an hour there.  Occasionally the decision is made to risk it, and see what we can get away with.  He pays the price, we feel badly, we choose more wisely for a while, we forget, we risk, you get the picture.  It's a fairly demanding job.  Yep, I am funny.

He recently had a 26 day stretch of no irrigations.  Hallelujah!  Mind you, it was due to all of the above demands.  It was followed by an extremely bad bout of enterocolitis.  We are nearly a month out and he is doing better, but we have yet to give the irrigation tote a rest again.  It is literally moment to moment around here.  We don't know anything else anymore and it suits us.  The other children are still just as gracious and understanding.  They are amazing and I am so grateful for them.

He is the happiest 15 1/2 month old on the planet.  Quite possibly the fastest as well.  He loves his Daddy and his siblings.  He says Addie in the cutest way possible and it means: Zackary, Jacob, Ellie, Addie, and baby.  He throws fits and does 'naughty' things to get his way.  He is figuring out very quickly that he was born to a mommy that doesn't buy into that sort of thing.  His favorite thing to do is fake cry for something he knows he can't have at the moment, and then give me a very serious face and shake his head no, while mimicking my sing song 'nope not right now' tone.

He would live outside if he could, and luckily he has siblings that love to take him.  You will often spot him carrying his shoes around making his 'please put my shoes on and take me outside' noises and grunts.  It's irresistible and works most of the time.

As far as what it means for me, well, it means I am a mom with a baby that has a disease and we are living with it.  I am doing the best I know how and he seems to be doing alright; so does everyone else.  Are there enough hours in the day, grains of sanity, or tangible measures to reassure?  Nope?  Does any mom have those things?

It's our life and we're living it.