Monday, December 20, 2010

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 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.


  1. How beautiful! She really is filled with light.

  2. good job Lucia on your 5 month birthday! She is so beautiful. I am happy each time you blog, even if there is nothing 'new' it is really good to hear from you. We keep praying; Fr. M never forgets Lucia in all our prayers at church; I put Lucia and you and Fr A on the prayer list at the monastery in Brownsberg and will have you on the list also, when God willing be at Holy Dormition in Michigan.

    Your family picture is so beautiful.

  3. Happy Birthday Lulu! We love you!

  4. She is so pretty! Little darling. Always in my prayers.

  5. Ramia, We think of you often and Kelly, the kids, and I pray for you before we go to sleep at night. It's so sweet to hear the kids pray for Baby Lucia. To see a little baby touch the lives of so many people especially other children is so sweet. Thinking of you, Treva and family

  6. Ramia,

    Lulu's light is shinning through in so many special, beautiful, and different ways. That gorgeous daughter of yours is such a strong one. She sets and example for all of us. My family and I continue to beg for His mercy and that Lucia may be relieved of all her pain.

    I love you, Father A, and Lucia sooooo MUCH!

  7. I love the picture of her in her birthday outfit! Such a sweet baby! And the family picture is pretty great too. You can tell she is so loved and special, thanks for sharing. We continue to pray, Lord have mercy on sweet baby Lucia!

  8. Happy Birthday Lulu! :) How beautiful to have people from all over pulling for this little angel. Ramia I check in every day nearly on your blog! Thanks for keeping up the will to share!

  9. We still gather around as a family and pray for you every single night! You are all so loved by us. God bless you all and Merry Christmas!