Our Girl...

Sat on her "perch" in our family room for the first time in three months yesterday. We were so encouraged to see her up without assistance. It still hurts, she's not that strong, but everyday it gets a little better.

She had her doctor's appointment in Shreveport yesterday. Our surgeon in Shreveport is re-applying for the grant from the FDA to release Omegavin for her. A good friend, called a good friend, who called our team, who laughed about the whole connection, and happily agreed to apply for us. Now we wait. We've been waiting almost a month and now we keep waiting. This is step one of obtaining it. The other steps will follow. Ashley's liver enzymes were over 500 and 300. Her bilirubin was over 14 and her direct bili was 9.5 this week. Her alk phos was sky high as well in the 5oo range. The bottom line is that the TPN is keeping her alive but it is killing her liver.

Yesterday was such a long day for her that today she is worn out and has been sleeping for most of it. She's still so tiny and so fragile. Although there are days that she looks good to us we still realize that she is a very, very sick little girl. We are so in love with her and our time with her is so precious. We are grateful for every single moment. So grateful.