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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 7, 2012

Happy memories - doctor appointments

Trisomy Awareness Month continues. My daughter made a blue ribbon for Trisomy 18. Unfortunately we didn't have any darker blue ribbon on hand.

When I turned my calendar page to March last Thursday, I found myself saying "awwww ..." Lilly had had four doctor's appointments scheduled this month. (audiologist, ENT, genetic pediatrician, and cardiologist) Appointments were sort of a hassle and could be tiring - some were an hour away. And I was always concerned about exposing Lilly to the germs in those places. But I really did love our time together and showing her off. Most of her appointments went very very well and the doctors would be just beaming about how well she was doing. I always felt so proud of Lilly! I loved that she was helping to break most of those doctors beliefs of Trisomy 18.

I remember one doctor was initially very hesitant about Lilly. He was polite but it was obvious he didn't think she'd live long at all. He was a statistics guy. We firmly but politely made it clear that we were going to do everything we could to help Lilly. We did not know how long she would live, but we would fight for every day. When Lilly was two months old she got an NG tube for feeds and shortly after that she had surgery to put a pulmonary artery band on her heart. She really started doing well after that. As she grew and became more interactive, this particular doctor become more excited about Lilly every time we saw him. One time Lilly's regular pediatrician told me this doctor had called her with an update and he had just become so impressed with her. I miss taking Lilly to see him and his big smile when he'd check her out!

Ha! I never thought I'd consider doctors appointments as "happy memories" but I do. :)

Anonymous has been busy at work again this month making a shamrock ornament for Lilly's memory tree. She left it at work for my husband to find. Thank you Anonymous! You did a great job!

"At all times and for everything giving thanks in the name of our Lord Jesus Christ to God the Father." - Ephesians 5:20

1 comment:

  1. Happy Memories....
    My friend Lou from England told me last night that she was out and about yesterday and saw a lady with a baby. Lou was intrigued by this baby which reminded her so much of Lilly and evidently was staring so, that the mother finally told her to "take a picture!". The mother thought Lou was being rude. Lou apologized but the mother was offended and told her that her daughter was not a freak show.
    When they got outside of whatever store they had been in, Lou approached the mother again and apologized and asked if her daughter had Trisomy. The mom was shocked and pleased and asked if Lou was a doctor. She'd never had anyone know about Trisomy besides doctors. This lead to a short discussion of how Lou knew about Trisomy and the mother was so touched that Lou cared and she WANTED to talk about her daughter. :)
    Thank you for sharing Lilly with the world and educating the public. Including myself.