Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Hi all, We'll be at Children's Inn/NIH on Sunday March 4th. We fly back out right after Lily's appointment on the 5th, but if anyone else is there on Sunday let me know if you want to hook up for a cafeteria snack or something. We were going to have an appointment in Hartford, CT for the brief clinic next week, but it turns out her most recent fever was due to pneumonia, not pfs (way different symptoms besides the high fever. Ironically, she actually was a bit LESS miserable with bacterial pneumonia than with a typical fever episode, though still really rotten--another really confusing parenting aspect: when to check in w/the doctor. It sometimes seems that if she doesn't feel THAT bad and her fever is lower she might actually have an infection ; ). Anyway, we are off to the NIH site instead as she is still ill and on antibiotics. Kathy Cusack at NIH has been so very helpful; we are flying from Seattle for this so being able to still make the appt. despite the illness was a godsend, as she got the chest X-ray AFTER I got the plane tickets . . . I am so grateful for all the insights and information shared in this group. Thanks! I'll update on our return. d Timblin (Lily, almost 7, pfs) Seattle mdefaye@... Quote Link to comment Share on other sites More sharing options...
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