I'm flying away for a little trip to stay with Alex for the weekend, so you won't see an update till next week. Miranda's staying here with the kids (Yeah for me!).
Hope is actually doing a little better. She's only crying for about an hour each evening, maybe the meds are starting to help. Still hoping...
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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'.
7 comments:
Have a blast!!! Get some well deserved rest.....Maybe see ya next week.
Have a great weekend!! There is no one who deserves it more
Enjoy-most deserved r and r!
I am so, so happy for you... enjoy your alone time with Alex!!!
Dana
Hi Jolene - that will be so special for you to be away. Glad you are taking the time. It's a much needed break for you. Love you.
Glad to hear, Jolene! Enjoy it - you deserve it.
ooops, forgot to sign my last note. Madelaine
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