Heart catherization re-scheduled

Lilly's heart catherization was re-scheduled for September 8.

It was good she didn't have it this morning. She had an incredible amount of congestion and was spitting up a lot of snot, poor baby. After a lot of suctioning and a nebulizer treatment, she fell back asleep and had a marathon nap session - 5 hours!

It must have been just what she needed because when she woke she was full of energy and smiles and her nose hasn't run since.


So Lilly has had a productive afternoon. She was busy working on her laptop computer. Then she sat in her special chair in the kitchen to cheer on big sister, who's night it is to make dinner.

Something exciting Lilly has started doing this week is opening up the forefinger and thumb of her left hand, for the first time. It is so wonderful because those were the last two fingers to unclench. I look forward to her learning to pick things up one day. Hopefully before too long!


Lilly's little friend Giuliana was featured in a short news update in her hometown yesterday. Giuliana is exactly one month younger than Lilly and has mosaic Trisomy 18. That is rarer than full Trisomy 18, which Lilly has. Giuliana can roll, scoot around, and can almost sit by herself. We're so proud of her! I've observed that the mosaic children tend to be able to do more physical things sooner than those with full Trisomy 18. (In general.) Though Giuliana's mother told me that Lilly was able to lock her legs to stand before Giuliana was. One thing I've noticed is that though these children have a lot in common - the T-18 still affects each one so differently so you just never know what to fully expect. If you'd like to see Giuliana's news clip go to: http://www.wfmj.com/story/15327382/miracle-mileston

I'll never understand why God created some people the way He did. But I know every being He creates is for His glory. That includes Lilly and all the others with Trisomy 18 who have died already or are still alive. I love this verse:

"Indeed, the very hairs of your head are all numbered. Do not fear; you are more valuable than many sparrows." - Luke 12:7