Saturday, May 4, 2013
Reagan slept well last night, while her brother kept waking up crying. It may be time to let him cry it out...especially considering I pulled something in my back this afternoon and I can barely walk, much less pick him up! I woke up this morning to Ryan jib jabbering in bed and Reagan wide awake and turned completely sideways in her bed! She's been a good girl again today, but maybe a little more tense. There have been a few times where she's made whining noises that sound like she might be getting upset. I think her tummy is giving her problems. The thing is, most kids with mito/seizures etc... have issues going to the bathroom. Many of the medications they are on have constipation as a side effect, but mito itself causes slowing of GI motility leading to even more issues going to the bathroom! Reagan has been on laxatives since she was a baby. Doses that would send adults to the toilet nonstop! We've tried just about everything...Miralax, lactulose, senna, glycerin suppositories, Pedialax liquid suppositories, milk of magnesia...but nothing gets her going on a regular basis! We're lucky to get her to go every 4-5 days and sometimes she goes a week or longer. But what I've found lately is that even when she needs to go, she can't. She's clenched down so hard, she refuses to let it out! That's where I come in. I have to help her go...otherwise there's no telling how long she would hold it in! I had to help her twice today and both times she fell asleep afterward. This is obviously something neurological...her body just won't relax and let it out...but I wonder if there's anything they can do to help with that? I don't know if "clenching" is a common problem or something unique to her. I definitely need to discuss this with her GI doc. Poor girl...can't even poop on her own! She's a sweetie though and she sure is going to be happy to see that Grandma is coming tonight! Hopefully she hangs on and continues to have good days...for everyone's sake!