Brodie just left on the bus for school, Ashley has had her meds, feeding and stretches, and Hope is still awake but not puking. She's kept down three meds so far this morning. I'm giving 3ml amounts every 20 minutes, hoping that her stomach can handle it. so far so good.
It's day 3 of the 'episode' and she's following her expected course. She's having more seizures than awake moments, she hasn't slept since this started (the seizures keep her awake), and she hasn't pee'd since Tuesday. Once the meds are in, I'll start a slow drip of pedialyte and see how it goes. By tommorrow, she should be looking a whole lot better.
In the meantime, I'm hoping to get a nap this afternoon, because I'm working nights tonight.
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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:
Brodie gets on the bus before 6:40 a.m.!!!! Yikes!!! Hope all is going better with the little Hopester......and that you are getting some rest too, Jolene.
Oh my, No! He gets on the bus at 8:40 am. The time on this blog has always been off by two hours for some reason.
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