Hi everyone.  I got lots of sleep last night - all by myself.  It was bliss.  Don took both boys (which means he got on sleep, unfortunately) but I was just about to collapse from not sleeping for so many days.  I went to bed at 10:30pm and didn't even so much as roll over till 8:30am.  Luckily for Don, this was also the first night Cody hasn't gotten up in the middle of the night for months.  Cody slept from 11pm - 8am - which is a miracle. 

Cody is doing..................okay.  He is eating some, but refuses to drink which is really really not good.  If you bring a drink near him, he freaks out.  I've tried gator aide, juice, water, you name it.  I just don't understand it.  He's moving around better, but is quite grumpy and fussy.  He really needs fluids right now - but at least he is eating something and at least he got some rest last night.  He's also refusing to take any of his meds or supplements which becomes very challenging.  Sometimes I wonder if, after an ER visit, he just wants to be left alone.  He gets so poked and prodded in the hospital, maybe he's just rebelling.  I have no idea, but it's never been more critical to get his meds, supplements, and fluids in....so prayer for that would be great.

Because the last week has been devoted to getting him feeling better, the house is a shambles so that's what I will attack today.  Laundry, groceries, dishes, clutter - you name it!  But at least I can attack everything with a night of sleep under my belt.  This coming week is full of Dr. appts. at Children's because they are really keeping close track of Cody after the crisis this week.  We see a nutritionist monday that works with the mito team.  Cody's severely deficient in Vit. D - plus he's skeletal skinny.  This past week of illness and not eating did not help his weight.  It's getting to the point that it's not okay how skinny he is.  So the nutritionist will try to help me fatten him up.  I've been trying for a year - but maybe she can help me think of something new.  In general, he eats a ton...so my gut wonders if he's just not getting the nutrients out of the food.  Seems like no matter how much he eats, he just wastes away. 

So there you go.  Never a dull moment.  At least he's not collapsing every half hour like he was all last week.  We're heading in the right direction - just need some good days of eating and drinking to help this recovery along.

Thank you for your prayers, emails, and concern.  We cherish it all.

Shawna