Sunday, August 12, 2012

Day 6 hit like a ton of bricks

Wow, yesterday was the toughest day by far!  Dave was hoping to get a chance to feed Colleen, but they thought it best that Colleen and I push through and keep working on her challenging me.  And boy did she!  Earlier in the week, she seemed pretty compliant and showed some resistance but yesterday was...I don't even know a word for it!  She clearly is capable of slamming a good ounce or two of milk, but even from the first sip at dinner, she was looking for ways to get out of it.  There were tears, whimpers, lots of holding food/drink in her mouth, etc...she would get so worked up, it became difficult for her to hold that stuff in her mouth and she would get all this snot going, she'd try to cough w/o gagging, she'd get all messy...Through the whole thing I am supposed to remain neutral.  Easy?  Not on your life!  *in my head*  Look at the floor!  Make a disappointed face!  What does that look like anyway?  ARG  What is she doing?!  Why doesn't she get this?  Doesn't she want it to be over?  Just swallow already!!  and on and on and on....
Everyone kept reminding me that I did such a good job and it wasn't anything to do w/me, that I was fighting against some demons or dragons from her past and we don't even know what exactly we are all fighting!  I know these things in my head and it makes my heart hurt.  This is another example of where I think about how much easier my life would be if it was normal like everyone else...but then I remind myself that I don't want a normal life anyway!!  This is better than normal even if it is hard.  It still makes me pretty exhausted though...I told Dave I felt a little like a person who gets so used to being cooped up that they just don't want to go out anymore.  Yeah, I think I could use a good walk outside around the huge medical campus today.  
All of that being said, we are very blessed to be here.  I've seen my girl eat and drink more in one sitting than ever before.  I've learned a lot and everyone has been kind and attentive to whatever we've needed.  Last night I got the best sleep so far b/c Dave brought me one of those egg shell pads.  You know what I mean, right?  It looks like an egg carton, an inch thick or so of foam, the size of a mattress.    The other nights weren't too bad...well, they weren't good.  The couch pulls out so that there are 2 halves.  Each half is made up of 3 parts.  The back rest part, the seat part and then this bottom part comes out like a trundle and you are able to lift it up so it's the same height as the other 2 parts.  So yeah, a crack down the center and 2 cracks on each half the other way.  If you ever have to sleep on one of those, I highly recommend an egg carton pad or whatever you call it.  I was super tired yesterday too, so I am willing to bet that had something to do w/it as well!  Either way, I know I didn't feel the cracks last night!  =)  I will definitely not forget to put that on again, like I did the first night Dave brought it.  
Another thing I've decided is that when I build my dream house, I am totally going to put a huge north/northwest facing frosted window in my bathroom!  This one is almost ceiling to knees, all the way across the room.  It's a lot of natural light!  (The only bad thing about that is that I can see all the gray hairs!!!  Oh well, I'm sure I've 'earned' a few new ones this week...not like I'm going to do anything about them anyway!)  Call me weird, but I think the regular part of the room is not quite as inviting as warm and fuzzy as the bathroom!!  Now you know I'm a little loopy after being here a week - I'm talking about the bathroom!!!  
As always, please keep us in your prayers...don't forget those prayers of praise and thankfulness too!  We've been talking w/the docs more about school lunch strategy.  That was one of my big goals for coming here.  A small lunchable (this momma is going to try to make them on her own), a quarter of a sandwich, lots of enjoyable bite-sized finger foods...I'm thinking of bento boxes.  Anyone do those?  I need to find a good set of them, not too expensive...?  Suggestions welcomed!!  I look online and I get overwhelmed.  I really don't want anything w/BPA in it but it has to be something she can open easily herself (per Dave).  The stainless tiffins look good but I think they are too big.  I don't know...I've got time and until I actually order something I can always use bags and little tupperware type things.  Environment be darned, my kid needs to eat =)  
Six days down, six days left....

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