I have been very reluctant to post any blogs - well first off, not much has changed in Lucia's condition.  Actually, let me take that back.  Lucia's condition changes so much within a day that it is so hard to write and tell you all she is doing well, because sometimes, the next minute she could be doing horribly.  But that has been the case for a while -- our "new normal" has become fluctuations from one extreme to the other, and it can take just seconds for the switch to happen.  Her resilience is amazing - she has become my hero (or my "heroine" in proper English).  She has hit rock bottom so often, and then just gracefully recuperates like nothing happened....truly an unbelievable wonder, which could only point to God.    

I have to say that we were blessed to happily celebrate her 5 month birthday, and Lucia did great all day long!  She was alert, wide-eyed and looking around, although she was kinda drowsy when we sang happy birthday to her (maybe she was trying to tell us something about our "great" voices :) ).   She has broken her fever finally, and we figured it was likely because the poor thing was dehydrated - also why she was losing all that weight.  We are trying to find the delicate balance of keeping her hydrated enough and yet, preventing the fluid from building up significantly in her lungs.

I wish I could tell you that today was a good day -- obviously when I set up a sentence like that, you know that it wasn't.  Lucia got very hysterical this morning and could not be comforted.  When the nurse came this afternoon, she determined that Lucia was under respiratory distress and said that Lulu was using everything that she had just to breathe.  Breaks my heart.  It is the worst thing in the world to watch your child suffer - and I think that the Lord would agree...so would His Mother.  The medication we gave to ease her distress seemed to have little effect, but now, many hours later, Lucia is peacefully sleeping right by her daddy...and still trying to swipe at her cannula and feeding tube...yep, that's right....IN HER SLEEP!  :)  Her eyes are totally closed and her heart rate has slowed down (so I *think* she's sleeping, unless this little girl is playing me for a fool!) and yet, her hands are busy waving at her face to reach her desired goal - which is to rip all that stuff off her face.  She is so determined and strong-willed.

Please continue to pray that the Lord have mercy on her.

Some pics from her 5 month birthday...
   

After bath time.

In her birthday outfit - SO glad I was able to capture that BEAUTIFUL smile.

The grub.  :)

  Family pic.