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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

Thursday, November 3, 2011

Lilly celebrates her 16 month birthday with a trip to St. Augustine

Since Lilly's surgery was delayed until tomorrow morning (9:45!), we decided to have a family outing to St. Augustine. This city was founded in 1565 so it is a place rich with history. We had a picnic and then went into the visitor's center. There were several booths set up in there. An elderly lady was at one selling tickets for red train tours around the city. (Not a real train - more like a tram.) She asked how old Lilly was and when I told her Lilly was 16 months old today she got that shocked look like she knew something wasn't right. I told her Lilly was little because she had a genetic disorder. My older daughter chimed in with "Trisomy 18" and soon the woman knew all about Lilly and how she's in Florida to get heart surgery. She suddenly smiled and asked if we would like to ride the red train. I asked how much it cost as it looked very expensive. (The cheapest looked to be $20-something.) She said quietly that she would like us to ride for free. Before I knew it she had given us tickets and we were on our way to the red train stop.
Wow - another Lilly blessing! We took a free hour's ride around the city getting an interesting history lesson as we rode.
Lilly, and my son, fell asleep part-way through the ride:

We passed the old fort that I really wanted to go to, but we ran out of time:

This live oak tree is called "The Senator" and is about 600 years old:

One of the most photographed streets in America is Magnolia Avenue:

After we got off the red train, we realized that Sneaky Lilly had not only kicked off her sock, but it was long gone as the train had driven off:

Lilly gets to stay on her usual feeds tonight. (We do continuous feed breastmilk all night.) Then we are to cut her off at 5:45 a.m. We're to be at the hospital at 7:45 a.m. and then surgery is to begin at 9:45. We are to get updates throughout the surgery.

We are so grateful to everyone for your prayers for Lilly. We know that they are powerful because as Jesus said "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them." - Matthew 18:19-20

Lilly is now off to get a bath in the special antibacterial soap they told us to bathe her with tonight.

6 comments:

  1. May the Lord grant a successful surgery tomorrow for Lily, and may He also grant you and your family peace and joy for all of your days!

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  2. My prayers are especially for Lilly tonight. I'll be thinking about you all tomorrow.
    Love,
    Jill

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  3. Thinking of and praying for you all this week, especially today. May God guide the surgeon's hands today and may He bless Lilly with a quick and uneventful recovery!
    The Pool family

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  4. I'm praying for your family and Lilly. Grace (Faiths older sister)

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  5. Love the kind hearted lady from the train rides. :) And its very appropriate that Sneaky Lilly kicked in LOL

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