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Wednesday, April 1, 2009

Questions...beware of a little complaining

What does a parent do when his/her three year old daughter, who has a rare disease effecting her in ways unknown, cries uncontrollably and inconsolably for several hours straight during the night? What does he/she do when he/she has a newborn who has her days and nights confused and wants to wake every hour to eat at the same time her three year old sister is crying uncontrollably and inconsolably? What does that same parent do when her husband has to go back to work and has to get sleep during the night so he can function at work?

I'm feeling a little bit anxious right now. The previous questions sum up our night last night. My head hurts from lack of sleep, and I am hoping and praying we can figure our something so that Emma will be more comfortable or whatever it is she needs so she'll sleep through the night. I'm also hoping and praying Cora begins to get her days and nights turned around so she doesn't have the need to nurse hourly at night. A little more like every two or three hours would be great! Thank goodness Kelvin is off for a while longer.

It's just so frustrating not knowing what Emma needs to comfort her. I don't know why she is crying. I don't know how to make it stop, and very little seems to make her happy anymore. I wish there was a parent handbook with the ins and outs of dealing with a child with Batten Disease. My friend Jenni and I are just wishing most of all we could take our girls shopping for the enzyme they so desperately need. Wouldn't that be nice?

Something neat...the night before last Emma was laughing in her sleep. I miss hearing that.
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