Hope woke up full of happy energy today. She had some good strong coughs, drank her bottle and has been smiling and making happy squeals all morning. So fun.
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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'.
Common Interests...
Blog Archive
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2008
(90)
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September
(25)
- Happy Day
- Smiley Hope
- In the Past with Ashley
- More of the same
- Still more seizues
- Few Smiles
- Not so good.
- More Seizures
- No fun!
- Ashley smiles
- Sunday, Sept. 21
- New Wheels for Ashley
- Jump on Daddy!
- 2 hours to drink a bottle!
- Brodie on the Bus
- Teething
- New Day
- More Seizures
- Friday, Sept. 12th
- First Day Home
- Home
- Smiles
- Wed. Sept. 10, 2008
- Ambulance ride on Friday
- Hope's first hospital admission
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September
(25)
1 comment:
This is just way too cute Jolene!
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