Sleeping Beauty

Weight check = 5 lbs. 8.5 oz.

Lilly says "hi" to everyone reading this! She's laying on me and looking around and "talking" to me. She still doesn't make a lot of talking/cooing noises, but she is slowly doing more, sometimes for 5 minutes or so at a time.

Have you ever taken pictures of something only to find the pictures didn't do the subject justice at all? That's how I feel about this picture of Lilly that I took this morning. She's sleeping in her co-sleeper and just looked so incredibly at peace that I just felt so filled with adoration for her.

Praise God Lilly looks so much more peaceful in general these days. We used to comment about all the terrible faces she would make (before the heart procedure) and now I think they were due to pain because she doesn't make them anymore. Lilly is just content so much of the day now, no matter where she is. Starting several days before we left for the hospital in Florida, Lilly would cry almost anytime I put her down - day or night. I now feel pretty sure that was because she was hurting so bad. Now she even sleeps all night long in her little bed next to me without a peep. (The first thing I do every morning when I open my eyes is to look at her - and to thank God that she - and all my family - are alive another day.)

Yesterday my husband had a phone interview with Social Security about Lilly. (I mention this because several people have asked us if we did this.) Because she has trisomy 18, Lilly is officially a disabled citizen. So we checked into seeing if she qualified to draw some social security benefits. (Which would be nice since supposedly the system will be bankrupt by the time we qualify to draw "our own money" back out.) But no, Lilly doesn't qualify because our income is over something like $30,000. (Though if she were hospitalized for several months then she would get a little something, if we started the paperwork way in advance.)

This afternoon was the "big day." The day to change Lilly's NG tube. I was a bit nervous about it as I worry about hurting her. But, I am thankful to God to say, I did it! Lilly didn't even whimper when I pulled the old tape off her face. She did fuss some as I put the new tube in, as she always does. (Especially when it makes her gag as it goes down her throat.) But after I was done and had tested that it was in place (perfect pH test results!) I held her and we went on a nice long walk and she was happy.

Housekeeping note: I'm still pretty backed up on e-mail from being gone so long, and there are still several blog comments I intend to answer. Please continue to be patient with me! :)