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February 27, 2013

Today, we took part in a promotional video for the hospital this morning.  Of all mornings, Lucy chose today to sleep in.  We had to wake her up just before 9am because the CEO of Nemours and the president of the hospital were waiting outside of Sleeping Beauty's room to come in and film/take some pictures.  It all went well, which I am so very thankful for because when it comes to Miss Lucy you never know how these things are going to turn out.  It didn't hurt that the two big wigs gave her a large pack of Post-it notes when they first introduced themselves to our girl(thanks Maggie for setting them up for success :).

Today, we weaned Lucy off of the PCA pump this morning because she only has a mild case of pancreatitis, wonders never cease!

Today, we took a trip down to interventional radiology (IR) to replace her low profile GJ button with a longer GJ tube.  The doctor at Hopkins replaced Lucy's long GJ tube with a low profile GJ button when he did her procedure thinking he was doing us a thank you, we wanted our long tube back.  Good thing we did this as her J-tube had migrated out of her jejunum and into her stomach, it was like a deja vu all over again.  Poor Lucy she was not in the mood to have to go through a prolonged tube change.

Today, Drew and I had a difficult but good talk with our palliative care social worker and our surgeon this evening.  We are so blessed to have so many wonderful people in our life who truly have Lucy's and our entire family's best interests at heart.

Today, I had a dozen or so e-mails that I should have addressed, but didn't.  I chose to watch last weeks episode of Scandel instead (thanks Jen for getting me hooked on the show:).  It took me twice as long to get through the episode because there were numerous streaming delays.  Sadly, I didn't mind the delays, I have a lot on my mind at the moment and in an effort to try and process it I need to get away from it.  Can you relate?

Tomorrow is another day...

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