Just an ordinary Mom

HI.. I'm just an ordinary Mom.. to a child with mild CP. My daughter isn't "medically fragile", although someone in this world might disagree with me. I know children that are medically fragile and that's not Grace. Grace is going to be NINE this year, and she was born a bit early and has mild CP. Our issues, as I've written before right now, are really her POOPing.. I'm happy that we have a meeting with a motility specialist at the end of the month. But for a week now, I've been jotting down how her day goes.. meds (her only medication is for her motility and BM's, and acid reflux thrown in there for good measure).

Last night she seemed a little gassy, and when she gets that way she can be very behavioral. Pinching herself and us, and biting her forearm.. I hate that one.. I state that I wish she could just tell us she's hurting, which now she signs "HURT"..but in reality what can we do about it?? That's certainly the frustrating part.. but I rub her belly and give her some gas medicine. It feels like a never ending battle. POOP. Who would've thought.

I'll let you know how it goes, but if you have any ideas. Send them along - and YES she does get miralax (I know some disagree with that course of treatment, but we had a top surgeon tell us that was ok to give daily); she gets water throughout her gtube daily, on amitiza (for pooping, and we're tweaking that med to eliminate the 'blow outs'..which seems to be working.)

Just an ordinary Mom - doing the best I can :)

pattie