I think Hope is already doing better. This episode was not so bad. She still had a lot of dry heaving, but not as much vomitting. She's still stiff and having little 'sweats' occasionally, but she's smiling and alert. So, I'll go with that. She's smiling, good enough.
Mira and Brodie are doing great. I'm exhausted.
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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'.
2 comments:
Praying for you, Jolene. I have no advice or words of wisdom, just love and prayers! You are an amazing, strong woman and I admire you so much. I hope you get some rest and restoration this weekend.
Love, Elise
Hope you get a great snooze in somewhere between kids.
Judith
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