Understanding Lu

Our family's journey in living with Rett Syndrome.

Monday, January 19, 2015

What might have been

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I let some sadnesses simmer pretty close to the surface, but one sadness that I keep buried deep, deep down is my heartbreak at not having a...
1 comment:
Sunday, January 11, 2015

Still recovering!

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So, Lucy is still not 100% better. She's working hard on it though. Last Sunday she woke up with her cough worse again and a fever of 10...
Thursday, January 1, 2015

A Cliche

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 "It could be worse."  "Somebody else always has it worse than you."  I think it is so unfortunate that these two statem...
Saturday, December 27, 2014

A little on the mend

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Lu has still slept A LOT today, but she has had brief periods of time of being awake and smiling. We all even ate breakfast and lunch at the...
Friday, December 26, 2014

"It sounds a little wet"

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Lu woke up on Christmas Eve morning sounding phlegmy. She had her morning feed and napped, and when she woke up she had the "sick eyes...
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Wednesday, December 17, 2014

Confirmation

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So, about the shaking episodes... Dr.  Sasha increased the depakote a second time and I kept a log for two weeks to see if there was improve...
Sunday, December 7, 2014

The Chill Out Chair

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 I have mentioned in the past the plethora of chairs that we have for Lu in an effort for her to be: comfortable, upright, or laying down, n...
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