Tuesday, January 6, 2009
how do i eloquently describe the beauty and disaster of snow in one sentence ... for now i cant i am spent. but its a beautiful mess. heavy, wet, wont stop. this is what utah pretty much looks like and unfortunately i am not out boarding and enjoying it. its just not afforded me that luxery this season. i feel snowed in as well, emotionally speaking. we still have no answers on saylor's condition and though we had a good long 40 hour or so interuption she has begun and episode again. the pediatrician thinks her docs at PCMC should take over, they think her pediatrician should address it. No one has answers and no one seems like they want to conquer this mystique. PCMC at best has given me a "you should come to clinic on friday" well ok we will watch her suffer for several more days all the while putting her at risk to this unknown culprit, doing damage. then we will come up so you can tell us you still dont have any answers and that you want to run more tests the following week. hmmmm ..... not good enough is all i can say. her pediatrician is doing all he can. running more labs today. but he seems at a loss as well and feels this complex problem in conjunction with her medical history should be addressed by PCMC. i feel crazy!!!!!! we also have an update on stock. we saw the ent today and after consult with some of his collegues and a review of his swallow study they agree that they can only treat the effects of the actual condition and now that thats under control with the severity of the condition and his age that he really needs to be seen by a GI surgeon at PCMC. just what i wanted to hear today.... and so we become more like the curious case of the snowed in obrien children.