Thank you so much for the supportive comments. I just sat down to give a quick update and was warmed by the thoughts that were passed our way.
Hope hasn't puked since noon today, although we have given her no food. She has kept her meds down since noon, which we give over a two hour time period, and now I've started a very slow drip of pedialyte. She has a fever right now, but it's not too high (38.1) and I'm hoping the tylenol keeps it down. She's sleeping and looks comfortable.
It's midnight and I'm going to get some sleep.
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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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