Hope is better. She had two wet diapers yesterday, no vomitting and started cooing again despite the many seizures. Ashley had a horrible weekend, full of crying, posturing and moaning. She did calm down when we took her outside for a walk. Not sure what's going on with her, but hopefully a bath and a fun hair do will cheer her up today!
This morning we are getting the girls all 'done up' for their filming. Rehab for children is filming the girls and a little interview with us, to use for the foundation (help raise money). They'll be here at 9am, so I better get hopping (it's 7:47 right now!).
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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:
Have a great day, keeping you in our prayers as always.
Brenda & Ken
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