We're back. Hope has had a rough week (making it difficult to concentrate on 'fun/relaxing'). I'm tired, so I'll leave a bit of an update and hopefully get back soon to chat more.
It seems that Hope is having more violent seizures now, and she's puking with the seizures. Her eyes are still puffy, and right now she sounds congested, but that's because she just finished puking up some brown stuff during an awful seizure (9:30pm ish). I know this doesn't sound too positive, but it's what I came home to. So sad...poor Hope.
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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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Poor Hope, indeed! Hope she's better and more comfortable soon.
P.S. Saw Brodie at church this a.m. - what a handsome guy. We had a new priest, and of course, what Brodie wouldn't understand in French was not that much better pronounced in English!!!!
And, he tells me he won't be bored at Grandma & Grandpa's because he brought his Ipod and if that runs out he also has his DS - soooo prepared! I'm thinking we'll have to visit to ensure he's not too bored.
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