General Update on Ellie's health

I have a few minutes so I thought I would give an update on Ellie's health. Our biggest need right now is PRAYER. There is nothing worse than watching your child waste away and not be able to do anything to help her. I am able to distract myself away from it quite a but by doing housework, and working so much. But then she reminds me- and I just want to cry. She feels miserable 24/7. I contacted Dr Cruz's nurse to ask when she should be scheduled for her central line. At the last appointment, he said he wanted to schedule after the first of the year. I asked Ellie what her concerns are so when the nurse calls back, I can tell her. Ellie said " I am constantly sweating, so tired I can't keep my eyes open, headaches, and nausea. My stomach is not hungry but eating has been drilled into my brain so it is hard not to eat ". 

Ellie has been having a lot of what she describes as "epigastric pain". She is very uncomfortable and is not eating much at all by mouth. The rest of us are busy with school and work and it is sometimes hard to slow down and really understand how she is feeling. I remind myself often to slow down and listen. I feel right now that Ellie is too sick to wait until July for surgery, as she is continuing to decline. It is really a life/death situation. I plan on asking if her surgery date can be moved up or if she can be put on a cancellation list. 

I have literally done everything I can think of to keep her nourished and comfortable, but sadly it is just not enough. I feel so helpless. We will be traveling back to Pittsburgh next week for her diagnostic ultrasound.  Thankfully it is a day I already had off work. I pray for good weather, since we had to cancel the last appt due to the blizzard. She also has to swallow a sit marker this weekend and get two xrays next week.  These tests will help Dr. Cruz better determine what is happening inside her body. 

We  appreciate all of the prayers and kind words and messages.