Baby Popeye

Weight check = 12 lbs. 13 oz.

Yesterday I fed Lilly spinach through her g-tube for the first time. She did very well with it. It is one of the top foods for iron (and she was recently found to be anemic) and in the cooked form, is excellent for the eyes. Lilly's eyes, like those of many children with Trisomy 18, are incredibly sensitive to natural light. (She often even needs her sunglasses or a hat on when it's cloudy out.) I read that some parents saw that it really helped their children's eye sensitivity to improve when they got a regular dose of spinach. We will see.

One thing I think the spinach did was to make Lilly stronger - like Popeye! She woke up early this morning (rare for her) ready to go. (first picture) She sat, playing busily, in her bouncy seat on top of the kitchen table while my son and I ate breakfast. She stayed wound up all morning, then had physical therapy from 11:45-12:45. She did fantastic in lifting her head today. When therapy was over, I picked her up and she was asleep on me within minutes. I laid her down (second picture) and she slept hard until occupational therapy at 2:15. After a few minutes of grogginess she worked really hard lifting her head for another hour.

Now I've laid her down on her mat on her tummy and she's talking to her reflection in her mirror. I'm trying to encourage a nap, but I don't know if that will happen! She's got another full belly - spinach and yogurt - and seems content.

This past Saturday, I combed the local thrift shops looking for clothes for Lilly for winter. I was specifically looking for soft cotton dresses (size 9 mos.) to pair with leggings as this seems like the best way to dress her so that her g-tube is easily accessible. I was surprised I couldn't really find anything like I had in mind. However I did find a beautiful soft blue coat with trim and a matching hat. (last picture) It is too big for this year, but I was thinking she'll look beautiful in it next year. (You hear that Lilly? I am planning for you to be with us next year! You work hard and stay alive! There's so many prayers for the Lord to sustain your life being offered every day!)

I had hoped we would have heard from Wolfson's Childrens Hospital today about Lilly's needed heart surgery. Still no answer. I'm continuing to bug them weekly. I think I'll ask my husband to help me pester them next week.

"Wait for the LORD; be strong and take heart and wait for the LORD." - Psalm 27:14