May 21, 2010 - 9:00 pm

Ali is pretty much the same.... We met with her pediatrician today to catch them up on how Ali is currently doing and to go over again just about everything.  Dr. Lindgren (Ali's pediatrician) has been in contact with Seattle Children's Hospital trying to figure out what to do next and to throw ideas out at them.  No new news really today.  Judy Smith (the Dr. we saw at Children's on Thursday) called and has set up an appointment with GI (gastrointestinal) here in Olympia at a Seattle Children's Hospital outreach clinic for next Wednesday and is still working on scheduling something with infectious diseases, neurology, and metabolic groups.  Meg and I have settled in to the routine for the most part by now, of course it is still hard to deal with not knowing anything and seeing Ali be like this for so long.  She did eat quite a bit of soup this morning - but not interested in anything at all the rest of the day...  Nights are still the toughest as she seems to be the most uncomfortable then...  She does not like being hooked up to her feeding pump at night, but after a few minutes of explaining to her why she "lets" me do it :(  She is such a tough kid... I can't imagine going through what she has for this long.... :(  It is definitely affecting her and she is cranky at times just because she doesn't feel well - although I don't think I would be handling it near as well as she is.  At times it really looks like she is consciously fighting whatever this is.