Understanding Lu

Our family's journey in living with Rett Syndrome.

Friday, April 27, 2012

Ode to Chad

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Next month will mark the passing of five years since Chad and I decided to sell our home, quit our jobs, and move to Clarion so he could go ...
2 comments:
Monday, April 9, 2012

At the mercy of "professionals"

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Last week was rough. I spent most of it stressing out about getting Lucy's therapies increased as much as I could...banging my head agai...
1 comment:
Saturday, March 31, 2012

Dr. Sasha

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Yesterday we left here at 6:30am and returned at 9:30pm! Our journey took us to the Bronx in New York City...one of the last places I would ...
2 comments:
Friday, March 23, 2012

Our good fortune

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Chad and I decided several weeks ago to schedule an appointment for Lucy to see a pediatric neurologist in New York City that specializes in...
2 comments:
Tuesday, March 20, 2012

Snarling like a leopard

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For as long as I have been having dreams, I have occasionally had these two different kinds: one where I can only open my eyes for a few sec...
Tuesday, March 6, 2012

Trying to be heard

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At Lucy's 9 month appointment last year with Dr. Kilian Brech I first shared my concerns regarding Lucy's motor development. He said...
1 comment:
Wednesday, February 29, 2012

The appointment

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On Monday we knew our life had become drastically different than we had ever imagined it would be. Today blew Monday completely out of the w...
1 comment:
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