Hi there.  Cody is doing a bit better.  He is voluntarily getting up and walking around although he is so wobbly and weak.  I got a whole hot dog down him today although we had to hold his arms and legs down so he wouldn't kill us.  I had a long talk with several providers at Children's today and they are keeping close track of him.  He is having wet diapers so I know he's not dehydrated.   But he continues to not want anyone to approach him with food or drink - and cleaning his surgery site is next to impossible.  I fear so many things -- that he will continue to boycott food.  That he won't use the G-tube because this has been so traumatizing that he'll never let us near it.  I fear how much weight he'll lose during this time that he only wants to sleep and not eat. 

There were a couple of moments today that he smiled and seemed perky.  He slept well overnight.  He is off all pain meds except motrin.  I'm just so exhausted - mentally, emotionally, physically.  I talked with someone today about how I could have advocated better for him in the hospital.  But it's SO hard to look a big important surgeon in the eye and say 'no.'  Advocacy is so draining and it is necessary on so many fronts.  I've had to learn advocacy in the school system, with therapists, with doctors....but I will say that the final frontier (for me) will be learning to advocate in the in-patient setting. 

It's such a contradiction with Casey.  I've never had to advocate for him one second of my life.  Everything's easy.  By the time Cody was Casey's age I had already had to make complaints to hospitals, fight insurance companies for therapies, fight for more therapy hours with better therapists, and fight to even get the very muscle biopsy that got him diagnosed!  This is SO not my nature.  By nature I am a people pleaser, fearful of disapproval.  This is so counter intuitive. 

In the midst of all of this, Cody shines brighter than ever as the most amazing trooper I will ever know.  He is made of steel.  I wish I were!!

love,

Shawna