Saturday, July 9, 2011


Reagan slept last night from 11:30-5:30am...not bad for a kid that doesn't sleep. It was in her brown chair, but sleep is sleep. She's been a lot more alert today. Less naps, lots more chorea. She's had a hard time sitting still for even a second. Her feet and hands are still cold and clammy and she's still trying to bite herself, but she hasn't been fussy or moany at all today. I definitely think things are improving. We've even gotten some laughs out of her today, but just a few here and there. She's certainly better than yesterday, but no nausea, so we're not out of the woods yet. It's after 10pm right now and I haven't seen many signs of sleepiness yet. Hopefully she'll be able to get some sleep tonight. We're looking into getting some nursing help 2 nights a week to help out a little with the sleepless nights (problem is, there's no way to predict which nights will be sleepless nights). Hopefully not tonight! On a sad note, another child with mitochondrial disorder lost her fight with this devastating disease yesterday. Eithene, who was not quite 5yrs old, had spent almost half her life in the hospital. Please keep Eithene's family in your prayers.

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