Update for this week

After last week's update, things have improved. She finally slept some on Friday morning, and has been sleeping at night and napping some during the day since. We stopped the Onfi completely, and it's working its way out of her system. So far her seizures haven't returned either, although the past few days she's been more twitchy, so I wonder if they are finding their way back possibly.

I also got a call last Thursday that she has a UTI as well, so we started antibiotics for that. Her urine grew pseudomonas, which is a very bad bacteria, and it's always a bit scary when it's a bad one like that. She's been junkier with lots of secretions and needing extra oxygen too, and working a little more to breathe (but not struggling), so we are keeping an eye on that as well.

My body shut down this weekend. I got a terrible migraine on Saturday that hasn't seemed to want to go away completely, and I've just been so tired from the past few weeks. Johnny is also tired, and our house is just weary. Please pray for rest and refreshment for all of us, as this can take its toll on our family.