Have you figured me out yet??

okay okay, I'm here to update, as most of you know, I am not good at commincation, unless I can sing how I feel through a song! lol. But here we go....

Went to Cincinnati last week, Lots and Lots of questions!! 7 years worth of history to share so I am sure it is all overwhelming for them. Plus they drew a bunch of blood, then they said that they would be in touch and probably have us come back for some scopes and stuff.
My overall feeling is that they do not have the same sense of urgency that is needed for her. Ever since she has started this 24 hour TPN thing things have been crappy. There is not a day that goes by that she has not had to deal with headaches or abdominal pain, Her blood sugar has been low, her liver and kidney levals have been high, all common side effects of the TPN. She has gone over that hill of more bad days then good, and I am struggeling with my redheaded patience to get somebody to care enough to DO SOMETHING NOW!!
I just keep replaying in my head what the hospitalist in Omaha told me... " Go home and have a normal summer " None of my children have had a NORMAL summer because of this, we all have stayed home watching her get sicker and sicker. I'm constantly watching one of her sisters carry her up the stairs while her brother carries her pump, because she is to dizzy and weak. her burst of energy do not last more than a couple of hours, and they take everything out of her.

I am just tired of having someone so tiny yet strong have to fight so hard to live.