So...my home computer has crashed.  For now, I'm unable to update Amber's page from home.  Here's the rundown from the past two weeks.

As you know, we had our trip to St. Louis the week of May 9.  Everything went extremely well.  All of Amber's scans on Monday looked unchanged from the last eval, so they opted not to do a bronchoscopy with biopsy.  We were able to go to the zoo on Tuesday, which happened to be the only day it didn't rain while we were there!  Amber, as usual, LOVED her ride on the carousel and particularly loved seeing the penguins.  (There's an episode of Dora where she helps "penguino" go home to his mommy!) I think she made the connection as I was calling the penguins "penguinos" and she was giggling!

We left St. Louis on Weds, and flew to Denver. We were able to meet Lucy and Marlena. Lucy is about a year younger than Amber and had a lung transplant in St. Louis about 3 months after Amber.  Her mom and I have become friends, and email pals, so we had a great time connecting in person and seeing the girls interact!  Lucy is quite a busy little toddler and quite adorable I might add!  The next day we headed up to Haxtun to visit Amber's Great-Great Grandma "GG" Livingston.  We had a nice few days of visiting family.  Amber soaked in all the attention and had a great week. 

Unfortunately, after a week of fun, Amber had a bad day this past Monday.  She had a very sudden onset of what seemed to be abdominal pain around 11am on Monday morning.  I quickly realized that something was wrong and Ron and I took her straight to the ER.  Amber was suffering another bout of Pancreatitis!  We were beyond disappointed, as she'd had such a good week prior to this, (and actually a few good weeks after recovering from her hip surgery!).  I left St. Louis feeling very upbeat, positive, and hopeful for a great summer with Amber.  This was a very serious blow to the psyche!

Amber was admitted to the hospital on Monday and then started on TPN on Weds.  By Weds, after two days of "gut rest" (or no feeds) she was feeling much better.  The team got her up to goal on her TPN then she was discharged to home on Saturday with TPN.  The plan is to stay on TPN until Dr. Fridge is able to speak with the Doc in Seattle who can do another ERCP on her to see what the problem is.  We're thinking this will happen in a few weeks.  They don't like to do ERCPs too close to an episode of pancreatitis, as the procedure itself can cause a flair up.

She's home and feeling good at this point, but I'm hoping whatever the cause of this flair up is an easy fix.  With summer coming, Amber needs to get her pool time in! She can't really go swimming with an accessed port!