The wound where her suture line opened a few weeks ago is healing nicely and getting narrower and shallower each day. Hopefully it will heal completely by next week's clinic visit which will take that off of her list of care items.
Using a combination of bottles and the pump we have exceeded 300 ml every day this week and on some days even gone over 400 ml. During the day we can feed her at 50ml/hr which adds up quickly and we have to stop her feeds early on most days when she reaches the 400 ml mark. We don't want to overfill the small bowel that we are trying to shrink and until we get an upper GI study done on Thursday to get a status of her bowel, we are going to stop at 400 each day.
Ellie is loving food by mouth and will chew through a dozen cheerios in a short time. Bananas and apple are also good. Rice cereal needs some banana in it to get her to eat it. It is encouraging to have her eat.
She is very close to walking for us and has started to let go of the table for longer periods. She will also migrate around the room. Floor to table to couch to table to wall to dog bed. Last night she took herself for a walk and went into the next room while Abby and I watched.
Last night Abby walked in for a middle of the night check and found Ellie sitting up in bed looking at her. apparently they were each surpised by this one-Abby because Ellie only rarely sits up by herself, and Ellie because she wasn't quite sure of what she had done. We are very glad that we have the covers on her IV lines as she gets more mobile I ahve nightmars of the lines getting tangled around her neck.
We got good news yesterday that a little boy that we know from Children's who had a multivisceral transplant a little while ago had his central line and G-J tube removed this week, leaving him with just a g-tube. Great news.
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