Day to day, Amber has been doing quite well.  She has been well enough to restart PT every other week this past month, and next month will begin weekly speech therapy sessions again. 

The pancreas issues seem to be resolving, though she still has some ups and downs with her pancreatic enzymes.  Because Amber's episodes of pancreatitis were so serious, we are taking a very slow, cautious approach to beginning feeds again.  Amber continues to tolerate TPN daily.  We've had a few mishaps with her port, but I think considering we're keeping a 3 year old accessed all day, we're doing really well!  She's inadvertantly pulled the needle out of the port twice and had little infiltrates, and one access line actually broke!  All in all we've done really well!  Her last weight was down a bit, but she's got a pound or two to spare, so no worries!  Last week she weighed in at 38.5 pounds....her top weight to date has been 40.5 pounds.  I can tell you honestly, my arms can't tell the difference, she's a lug!

She interacts and plays really well with her caregivers, though is still quite demanding and clingy when I'm around.  I keep hoping it's just a three year old thing.  (Maybe she's actually doing something "normal" for a change!) Her favorite thing to do is reading books.  Her favorite bedtime stories are Llama, Llama books, and she has a new favorite at Grandma Cheryl's house called Marsupial Sue.  (Grandma Cheryl recently relocated to Portland and we're very excited to have her here!)

We have been able to avoid the H1N1 outbreak so far.  Amber hasn't done much going out and about recently.  She's not been vaccinated for H1N1 yet due to lack of availability of vaccine.  I finally was able to get a shot yesterday at work!  We've seen many many cases here, and the sickest people seem to be my age group and Amber's age group.  About half the PICU patients are influenza patients and on the vent.  We've also had several VERY sick adults.  It's quite frightening really.  The scariest part is, tomorrow Amber and I will board a plane and head to St. Louis for her checkup.  It's been 8 months since we've been, and we simply can't delay any longer.  Amber has had a dry cough for the past month or so that I'm quite concerned about.  I'm hoping it's nothing, but realistically preparing myself for it to be something.  If all goes well, we will return  home on Thursday and Amber will be home in time to wear her cute monkey costume for Halloween!

Pictures and updates to follow this week!