Day 23 - Food Fight, And Not The Fun Kind

We were told yesterday to offer Amelia meals this weekend.  We were told not to worry about focusing on crunchy foods, but to not let her use her drink to swish out her mouth or anything like that.  We were also told how well she had done for Amy and Jessica, eating a whole piece of french toast, half her strawberries, half her milk.  We thought this should be encouraging.  We knew she wouldn't eat everything, but it seemed like she has started eating SOME things.

Now, we are trying to figure out what they are doing differently at the clinic than what we are doing, or if we are approaching it wrong, or WHAT we are doing that isn't right, or even worse, if Amelia is playing us because she knows she can...

Breakfast this morning, scrambled eggs, breakfast sausage...  She had a couple nibbles of eggs, had a bite of the breakfast sausage, and then complained that it was too hard to chew and swallow it, and spit it out.  She had a snack of a 2 oz. package of gold fish crackers and had NO problem chewing and swallowing those.  Lunch time, she said a tuna melt sounded good.  I made her a tuna melt with an Asian pear slice, and a slice of Gouda cheese.  The cheese got eaten with no problem, but the tuna melt and the Asian pear got tried, chewed, and discarded.  mid-afternoon, she had some more gold fish crackers, and again, no problem chewing and swallowing them.  Then, later, Katherine let her have an oatmeal cookie, and no problems biting, chewing, and swallowing that.  We just finished dinner.  Amelia had macaroni and cheese, apple slices, and a slice of Gouda.  You probably know where this is going... the Gouda was eaten no problem, but the macaroni and cheese and the apple slices (which I even peeled for her) were too hard to chew.  In all, she had probably 2-3 mouthfuls of food today.  The good thing is she is still on Boost through the food pump at night.

The BAD thing is we are trying to figure out what is going on.  We want to give her the benefit of the doubt here, but her actions make us think that:

1. It was too early to start her on Bite, Chew, Swallow,
2. They are doing something VASTLY different than we are at the clinic when feeding her, or
3. She is playing us because we don't know any better about how she should be eating.

The REALLY frustrating thing is the longer it goes on, the more we think it is the last one.  The more we think it's the last one, the more frustrated and angry we get...  We have put all three of our lives on hold to be here for her.  Our pets are all living without us, being watched by someone else.  Our house, my car, everything else is sitting there.  My work schedule is sporadic because I have to spend some days at the clinic.  Amelia's schooling has been disrupted and her friends are missing her.  So many things are all pending her improving, and she is choosing not to swallow because it isn't cookies and cheese that we are feeding her...

I can't help but snap at her when she is asking "what can I do?  I want something to do..."  I want to tell her that if we were at home, she would have all her toys to play with, she would have her art cart to play with, she could go up and play in her play room, or all kinds of things, but because we are HERE... She can only do whatever mommy and I are willing to trail along and supervise (as she can't be running around Ronald McDonald House unsupervised).

In the parent toolbox, they talked about this time as "Life Interrupted" which is accurate.  The big frustration right now is that it feels like she is fine with the pace of things here during life interrupted and almost like she is now trying to use it to get us to just feed her the things she WANTS rather than the things she needs and should be eating.

Needless to say, BOTH Katherine and I are on edge and a little frustrated.  It doesn't help out our relationship with each other, it doesn't help out our relationship with Amelia, and it is rapidly wearing both of us down to nubs.

Please pray that Amelia with have a mental breakthrough, that something will get the thought through her head that it is in her OWN best interest to start biting, chewing, AND swallowing for us.  I have been more and more tempted to remind her that her NG tube is only good for about a month to 6 weeks, and that time will be coming up REAL soon, at which point they will have to pull this one out only to put ANOTHER one in, in the hopes that might "encourage" her to start working a little harder.  I haven't yet, and I am trying VERY hard to hold that in check, but on days like today, when the stress and frustration are just ramping higher and higher... it is harder and harder.

Please pray that Katherine and I can exhibit calm and have a sense of peace about things.  Because right now, we don't... Our calm is very rapidly cracking.  Our peace, well it comes in little snatches here and there, and then rapidly slips away again.  I think we are both looking forward to next weekend where we get to go home for the weekend (with Amelia here with my mother) and go to the school auction, and have a little time to ourselves...  Oh, the days cannot fly by fast enough...