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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

Wednesday, March 16, 2011

Pink toga girlie

Weight check = 9.1 lbs. !!!! Yipee!!! Lilly is finally 9 lbs.!! Every pound she gains is such a milestone. Lilly had a cardiologist appointment today and the nurse rejoiced with me when we weighed Lilly.

Today's pictures are of Lilly in the cardiologist's office. She's wearing her pink blanket like a toga. We had a long wait today so we had fun playing around.


Dr. R, the cardiologist, was actually so surprised to see us in the waiting room that he called the cardiologist office at the hospital in Florida to make sure they had gotten Lilly's updated file and his request for her to have the VSD repair surgery.


When we talked to him I told him we were still waiting for a date. He said things must move as slowly down there as they do around here, and that this is typical since surgeons usually have waiting lists. Then he said that if we haven't heard anything in a week to let him know so that he could "harass" Dr. E, the chief surgeon. Dr. R was serious yet joking, as he had trained under Dr. E.


Lilly had another echo done and it showed that her heart was functioning excellent and the band looked good. The walls of her heart are continuing to thicken however, so he again said he wanted Lilly to have surgery within the next month.


After Lilly's appointment, we went into the nearby Whole Foods to pick up a few things. It was one of Lilly's rare outings into a store. She loved it. I had her in the Moby Wrap and she just looked around in amazement. She tried to be Extra-Sneaky Lilly though. While shopping I noticed that she was missing a sock. I retraced my steps in the store but couldn't find it. I figured it was gone forever. But, much to Lilly's disappointment, I found the sock in the parking lot.


"I love the LORD, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live." - Psalm 116:1-2

6 comments:

  1. She looks so cute!!! Love that you updated the banner photo!!!

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  2. This blog made me LOL several times. Several friends who saw her picture, commented that she had baby boobies. Kind of crude, but a Good thing.

    So happy about the weight, and to think that Moriah had a friend who's baby weighed over 9lbs at birth.

    Love those 'sneaky' tricks, Lilly. Your fans just wait for these antics.

    Shisshy will get those doctors going if she has to make a personal appearance. Aunt N.L. left me and Moriah her legacy and we won't let it go to waste.

    Hurry up and come. We have a whole stock of new head bands for you since you look so adorable in them.
    xoxoxox

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  3. So glad to see that another pound has been added! She looks SO good in these photos an the new one you posted on the banner. Will be praying for a spot to open up on the waiting list so she can achieve the next milestone!

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  4. Such a joy to see you so cherishing your daughter. She is a lovely jewel in your crown.

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  5. Such cute photos - glad you were able to find fun things to do while waiting at the dr.'s office!

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