thought i would start with a happy picture. saylor & nate did a bit of pipe cleaner art today. its nice to see her smile, even if it doesnt last.
something i have been wanting to share is ... can we talk about this? when anything scary or painful needs to be done saylor asks this question. the child life specialist pointed out how amazing this is. its not uncommon for a child her age to ask this in these circumstances, however its usually a stalling tactic. she pointed out that with saylor its not and how adult like of a process that is. surprising yet not ... hasnt she always been older than all of us?
today nate & i have been thrilled with the output coming out of the jeopardized tube yesterday. she is continueing forward on the healing pathway. there is always a few hard things in every day to hurdle over. one of them is always getting out of the bed, its really painful. the other thing today was changing her surgical bandage and her pic line dressing. we havent changed saylor since she came out of surgery (meaning her diaper) not because we are lazy parents but because she has been NPO and has two drains draining urine so there has been no need too. kind of ironic that we went from changing her more in a 24 hour period then we could wrap our heads around to not at all, guess it balances out in the end. today we decided even though the diaper was not soiled that we would change it for fresh one ... it did have a bit of blood on it. glad we did cause we found some unpleasant blisters between her legs. not a good thing, one more painful spot. we have dressed them as best as possible and hope that they dont get worse.
here are some pics from the day ... some tears, some rides, some graphic pics of her tattered abdomen, some friends
steve, janita, & meera came to visit this afternoon. it was REALLY nice to see some friendly faces and have someone to visit with. we really do want visitors and dont think that means you must bring something, just come bearing yourselves, thats what we need right now. pictures are strange i know and not edited, for some reason iphoto is not working and saving things like i normally get it to, i have no energy to deal with it either so use your head and rotate! sorry.
3 comments:
How great to see SAylor smile!! So happy to hear she didn't go back to OR.
I stumbled across your blog kinda randomly, but will be a faithful reader from now on! Just wanted to let you know that I will be thinking about your awesome family all the time and that you guys will be in my prayers!
I was just able to catch up on your blog. Oh course it made me cry. I keep asking Heather and Aaron for updates on Saylor, but it isn't the same as hearing it from you and seeing the pictures. That would be so difficult as a mother. All the things you are having to do. I wish I could get up there and see you guys. Maybe a miracle will happen, but I can't even seem to get to the grocery store right now. I hope that things continue to progress and get better. I'll keep you all in my prayers. And please call if I can help you with things down on this end.
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