Hangin' In There

Lilly slept soundly for about 13 hours last night. Her pulse ox alarm woke us up a number of times. She dipped into the 80s about every 2 hours. But the numbers jumped back to the low 90s quickly. Not great but not horrible. (These numbers represent the saturation percentage of oxygen in the blood.)

When she finally woke up, she was smiling and happy. She ate, had a breathing treatment with the nebulizer, then lots of back patting.

As she is napping this afternoon, I have been so encouraged that her numbers on the pulse ox are ranging from 97 and up! YIPEE!! Definite answer to prayer. Lilly is not out of danger yet, but this is improvement.

The pulse ox is one of our most important pieces of equipment for Lilly. It's one thing that we will always want to have for her. So we decided that there was no point in continuing to rent one, and just bought one. (Thanks cousin M. for helping finding one!) (2nd picture - You can see it in the right corner of the changing table that Lilly is napping on.) So far it's working well and is much smaller than the huge one we're renting.

My son - the little mechanic - loves all of Lilly's medical equipment. He's fascinated how everything works. Today he wanted me to make
a pulse ox for his Doggie. He stayed busy with it all morning, and would talk about Doggie's numbers not being good, or that he liked the quiet alarm on Doggie's pulse ox, or the sensor needed changing. It was pretty funny.

Though it also reminds me how different life is for siblings of Trisomy 18 children. (Or any special needs child.) On Monday as my son and I were walking through the parking lot to the emergency room with Lilly he exclaimed "This is a hospital where Lilly almost died at!" I confirmed "Yes, one of several."

This morning I read about the apostle Paul pleading with God to remove a "thorn" from his side. (The Bible doesn't specifically state what that thorn was.) It did make me think of Lilly as I thought about God's reply to Paul:

"'My grace is sufficient for you, for my power is made perfect in weakness.'" - 2 Corinthians 12:9

Sometimes all this stuff with Lilly seems so hard and overwhelming. But God's grace IS sufficient for Lilly. And us.