Wednesday, December 4, 2013

We had such a great night...she woke up only one time to eat around 130...then didn't get up again till about 630... so we got some much needed sleep... Tim had to go back to work today.. and he barely missed the residents coming in. It was a very uneventful aggravating day... the plan was to have the sweat test done and the gastrointestinal doctor come in and examine her lymphnodes and possibly do the rectal biopsy...they are thinking about doing that again because of the funny color stool with the funny odor that Maddie had this morning...makes the pediatrican think more towards hirchsprung disease...However, no one came in today...not one doctor..and no sweat test... so we have been very aggravated...The resident came in and was unsure why the sweat test wasnt done today but promised that it will be done by noon tomorrow...they wont really test her any more for weight issues until they have ruled out cystic fibrosis. But we are hoping that we will make more progress with the doctors and at least sweat test tomorrow... Another downfall was her spitting up numerous small amounts every feeding today and so i figured that she wouldn't have a gain today..and sure enough she didn't..she weighed in at 8.4 (2 ounce loss)..so very long and boring day...a very nice volunteer came to sit and hold her while i was able to go down and get something to eat..and she also brought Maddie a toy that hooks on her bed so she has some entertainment... but we are hanging in there..and hoping for more answers soon I do ask that you also keep Maddies little boyfriend Cooper in your prayers...he is 14 months old with a brain tumor on his optic nerve and at first they thought it was slow growing but now they think it is more aggressive...we have been very blessed to meet him at Roanoke Memorial...and spend every day of our second admission with him...and he means alot to us... He is scheduled for a MRI early next week so they can see what change has taken place so he gets the right chemo...Thank you all for the prayers and concerns for these sweet babies of ours... We love each and every one of you