Weight check = not sure. We're "between scales" right now. Should be able to start checking again early next week.
My sister-in-law was over briefly this afternoon and commented on Lilly's eyes and how they shook. (I don't remember if I ever mentioned this on the blog before, so I thought I would explain it.) I call them "bouncing eyes." Sometimes she focuses well and holds her eyes steady. Other times her eyes "bounce" up and down rapidly as she looks at something. (Very small up and down movements.)
I'm trying to help her practice focusing her eyes more by giving her things to look at. For example, I recently printed off several shooting targets for her. It's amazing how much she enjoys studying the targets. She will look intently at them for 30 minutes at a time. This picture shows her looking at her favorite target.Because of the Trisomy 18, Lilly is developmentally delayed in most things. But Lord willing, she'll get that eye thing worked out before too much longer.
Today I found the most beautiful little red velvety dress for Lilly at the thrift shop. (Laura Ashley brand.) It was only 50 cents! I couldn't believe it as it would easily cost $30 in a regular store. It's too big for her now but it will hopefully fit her next winter. I was just so excited about my bargain and felt elated as I left the thrift shop. I realized later that part of my joy in my purchase is that I bought something for Lilly to use in the future. Ever since I found out she had Trisomy 18, I have been very hesitant to buy anything that she can't use right NOW. But today I realized that I no longer have that constant fear that she's getting ready to die. It is true I have no idea how long she will be with us. But that dark shadow just isn't so oppressing anymore. (Thank you Lord!)
"The Lord God is our light and protector. He gives us grace and glory. No good thing will He withhold from those who do what is right. O Lord Almighty, happy are those who trust in you!" - Psalm 84:11-12
Lilly girl i love that first picture. love your big expressive eyes!
ReplyDeleteNever lose hope, because it's hope that gives happiness. Just thinking about what wonderfull and joyfull times might happen in the future givé's you the strengh and love you need in difficult times. They make you feel happy and blessed with every day you can share with this little beautifull and strong girl you have. oxox
ReplyDeleteBeautiful dress. Beautiful Baby!
ReplyDeleteGive her a kiss from Uncle Dennis.
ReplyDeleteI just wanted to tell you, I stunmbled upon your blog from a friend of mine on face book who posted asking for prayers for Lilly. I have been following her story ever since. SHe is a lucky little little girl to have such a wonderful family! I pray for you all daily and wanted to let you know that you are an inspiration. I have three children and they have had some very minor health issues and couldn't imagine going through what you go through on a daily basis. you are in inspiration! I wish you and your family a very merry christmas!
ReplyDeleteLilly! That dress is so cute! I have never seen your bouncing eyes.
ReplyDeleteDo they bounce???????
Your Tabby :)
I am a friend of the Bowers' and have been reading since close to the beginning. I just had to comment that I am so glad you are no longer living in fear. This past year has taught me NONE of us knows how long ANY of us have here. Merry Christmas! Enjoy your baby!
ReplyDeleteKelly