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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, January 24, 2011

Big bows and headbands

Weight check = 8 lbs. 7 oz.

Lilly's great aunt is visiting from Fla. and brought with her an assortment of headbands and bows for Lilly. This one is so cute and so funny. It looks like one of those turbans from the 1940s at some angles.

A couple of you gave me suggestions about using different tapes, and/or a sponge with the feeding tube on Lilly's face. (Her face is pretty irritated from the tape we've been using.) I went to the medical supply store today with my list and got a few different things. Unless something happens before, next tube changing day is Friday, so we'll give some of the new stuff a try.

Lilly as been extra smiley and chatty this evening. It's so wonderful! She was talking up a storm during family devotions at prayer time tonight. (She's the only child in the family that can get away with that!) Surely she was praising the Lord who has been so merciful to her!

"Sing to the LORD, for He has done glorious things; let this be known to all the world." - Isaiah 12:5


  1. Love the hair bows! Chloe and Autumn have these large ones too. so cute!

  2. Lilly,
    It was such a sweet day with you! You are the best baby to hold. I am glad you like all of the headbands. I will look for you one with FRUIT on it next time so you can be a CARMEN MIRANDA baby.

  3. Lilly is beautiful! We continue to pray for her, esp. that she continues to gain weight and grow.
    Ellen Baize

  4. LOVE the head band & bow - Lilly is stylin!!

  5. She is sooo cute! How precious are the days full of smiles and baby chatter!
    I love how she was chattering at family bible time - I am sure her and God have a pretty special relationship and like you said she was praising the Lord!

    "... and a little child shall lead them.''