Some days I truly feel like living with Mito is like living on a roller coaster ride. Wow! Abby has had a rough couple of days with fatigue and well, when fatigue hits... BEHAVIOUR hits too... not always positive behaviour (all you parents know what I'm getting at). The infamious answer when people see my children is "Wow,they look great." A bad day to us isn't always notable because a bad day could mean that we are wired and unable to control ourselves. I asked Abby tonight why she has been acting up. We always have a "talk" to close a day that hasn't been good so we can focus on trying better the next. She says to me "Mommy, I tired. I upset because I tired." My heart broke at that tonight. She feels this and she knows it is happening. She got hystarical because her hands started shaking, but this too is caused by fatigue and over stimulous. I have no idea what the future holds for my kiddos, but I know one thing, I will love them with every thing I've got! We did get a call from Riley today. Joey tested positive for Cdiff in one of his tests. Just came back. For any of you who came to visit THIS IS NOT contagious unless you actually come in physical contact with his dirty diaper. So fear not! =) They are going to be starting him on some meds to try to rid his body of this. I do believe it is like the 5th time he's been on this med. His lactate (acidic levels) were within normal range, but his liver counts were slightly elevated (typical of mito to cause.)
Off to bed for a busy day tomorrow... I apologize, I think reading this blog tonight is also like being on a roller coaster! Sleep! I need sweat sleep!!!!
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