My night shift went well and I just woke up. Hope looks pretty good right now, although a little 'freaky' with this wide eyed staring thing she's doing. Her eyes are wide open and fixed for the most part, making me check to see if she's breathing (which she is), and occasionally she will blink, so that's good. I'm guessing, there is some constant seizure activity going on, that I can't see.
No puke today, and she's been getting watered down feedings. I was expecting that she would have a wet diaper this morning, but not yet. Hopefully she had one while I was sleeping, I'll be asking Alex when he gets back.
Waiting....it feels like we're always waiting to see what happens. Not daring to say what could happen. Waiting for the relief of knowing she's gotten through another episode.
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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'.
1 comment:
You are an amazing woman of strength, and your husband a man of strength. I don't know how you do it...prayers and blessings to you all.
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