I feel the need to vent.
First let me say that being home, though not always "easy" has been good for Mic and her oral feeding. Sticking to the structure is a vital part of the follow through for her feeding therapy and we are doing a little better with that part since we have been home again. In general she really is doing well, and there are areas where we can see progress. However,
please understand that progress is a BIG continuem, and on the overall scale her progress is almost too small to percieve, but it is none-the-less very real. Her attitude towards food continues to improve. She enjoys participating, expresses hunger and asks to eat. She is gaining ground little by little in variety and in mixing flavors or textures. These are all areas where she does still have a ways to go......but she is "going" and that is HUGE!
The areas that are really hard are that her swallow is still very ineffecient and slow, which makes each meal REALLY SLOW and it is really hard work for everyone involved. (no, we don't know why)
This, in turn, engages me in an emotional battle. Sometimes I feel peppy, energized and full of life, patience and fresh ideas for the meal at hand...and some times I just don't. Sometimes I want to run away and hide, I feel like I can see in my mind an endless parade of breakfast, lunch and dinner stretched out endlessly before me, day in and day out and the battle that each one represents and I feel like I am drowning in an inescapable thing far to big for me to be able to face.
(now for the real vent)
Then there are times like yesterday, when I am face to face with a medical professional whom I respect but with whom I DO NOT see eye to eye. And I start to feel like all the frusteration and insecurity within me is a boiling volcano that must find an escape before something blows. Yesterday I sat down with the nutritianist. She really has no concept...of any of it. She sees Mic, the numbers which mark her reality, the need for her to feed orally, and the need to get complete nutritian into her body. All good and true things, but not nearly as black and white as they sound. Mic doesn't fit in her neatly made boxes. She glanced at about three of my twenty some pages of feeding diary and told me not to bother trying to add the calories anymore because my numbers are wrong and that its her job not mine. She didn't even look at every page, so obviously if it is her job (which it isn't) she isn't doing it anyway. She, like every other medical professional we deal with, does not agree with my stance on homeschooling and makes me feel horribly insecure about what I believe trully is the best for my daughter (and ties it into oral feeding which irritates me to no end). She does not seem capable to take it in when I try to explain what I feed her, how I feed her and why I do it that way, and simply seems to expect me to mindlessly follow her orders instead. And she is nice the whole time, so I can't even really justify getting mad. GRRRRRR
I really am not looking for sympathy--its hard enough to keep from throwing myself a pity party the way it is. But I would LOVE any prayers you feel led to lift up for us. Mostly......I just thought it might be helpful to try and be honest and unload.
Thanks for listening.
And this picture captures much of the essence of my children. Baby "D" got into a little mischief and is now caught and he knows its. Big sis is trying desperately to fix the problem that she didn't create. She was even actually turning the tape the right direction! But alas, it was to big of a mess for even her capable hands. My daughter is one of the most thoughtful, caring, compassionate and orderly people that I know--she makes me want to be a better person, and I love her for it!
