Tuesday, November 17, 2009

Baby's firsts and Emma

Did I mention Cora cut her first tooth last Friday? I. can. not. believe it!! She is also crawling, well, kind of crawling, all over the place, laughing, riding the little scooter car around the house with the big kids and eating more and more.



I just wish she would get the hang of sleeping through the night. Wouldn't that be nice?

On the flip side of that coin, Emma is sleeping more and more during the day, and most of the night. When she is awake she has been crying more, and I'm not sure why. Her seizures have increased and her medicine isn't coming close to cutting it. She still seems to react well to the Morphine, but I have had to start giving it to her more when she's awake. What drives me crazy is reading articles where doctors say there is no pain associated with Batten Disease. WHATEVER! Why wouldn't there be? I mean, if the muscles in your entire body were atrophied, it would hurt, don't you think? If your brain was wasting away, it seems to me like that might hurt too. If your stomach muscles were too weak to keep your bowels moving, don't you think you might have a pretty substantial stomach ache? If your body was in a constant state of stiffness much like having a charley horse and shook all the time, seems reasonable to me to think that would be uncomfortable. I just wish I could do something to make it all better. Unfortunately, Mommy's kisses are not doing the trick this time.

1 comment:

  1. Christy,
    Praying for you, your family and little Emma.
    In the midst of your busy home, may there be joyful memories made each day.
    I pray God's grace and strength over you.
    Love and hugs and prayers,
    Debi

    ReplyDelete

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