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Saturday, September 18, 2010
Out of home respite
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Hope is still doing fantastic, with a lot of coo's and smiles. Ashley had better days at school on Wednesday and Thursday. On Friday, I took the girls to their 'sleep-over'. It's our weekend to have 'Out of home respite' and we're taking the time to sleep in and organize a few areas of the house.
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Ashley and Hope were born with Adenylosuccinate Lyase Deficiency. This metabolic disorder left them with a damaged brain resulting in seizures and profound psychomotor delay. They were not expected to live past infancy. Although they were palliative care, we kept them at home to love and hold. Ashley died on March 18th,2011 (6yrs old) and Hope followed her home on August 14th, 2011 (4yrs old). We now continue our journey as a 'Family of Four'.
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3 comments:
Hoping you get lots of rest this weekend before the wee one arrives. Best of luck with labor and delivery. I'll be thinking about you in the days to come.
So glad to hear that Hope is doing well and that Ashley is settling.
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