Monday, December 9, 2013

Today was pretty uneventful...they still waiting on some labs to come back but everything has been normal so far....so they still deciding what to do next..it was rough night..they put the bag on her to try and collect her urine but was unsuccessful until the 6am feeding....she also had a basic chromosome blood test done this morning. And still waiting on results for that, and the rectal biopsy..We did get the urine analysis back since we got it so early and it came back clean...so the other one was a false positive....I know they are working hard but its aggravating when they are talking about doing supervised feedings...they say its to make sure she is taken in enough and obviously she is if she is gaining weight( gained 3 oz today, making her 8.8)...and since they make her bottles and I just pop it in her mouth....the doc decided since they couldn't fill her enzyme she needs just to take her off...it didn't help her or hurt her..they are still pretty lost at what is going on...the GI doc that we saw today is ordering a blood test for the growth hormone but im not sure when that will be..he also said the lymphnodes wasn't as big as the surgeon made them out to be since she doesn't have any meat on her bones...they also are making her eat every 3 hours again...which I told them that that wasnt a good idea cause it doesnt digest that fast and since she doesnt poop then she just spits up and she has the last few feedings... I am praying for more patience and I can feel God's presence, cause if He didn't help me between getting the sweat test done and these supervised feedings, I would have done lost it.. but everyone has been so kind and love her so much and im very glad we are here