Hope started seizing around 4:30 p.m. and despite three doses of ativan and an extra dose of Phenobarb (directed by the doctor on call), she didn't stop. So, we took her in to Emergency to get their help. After more phenobarb and some Dilantin, her seizure stopped at 10:30 p.m. She seized for six hours with no break, it was hard to watch. We're home now, and we brought Hope home with us. We'll see what comes tomorrow morning. It's 1:20 a.m. right now, so I'll go to bed and talk more later. Thank you so much to everyone who supports us with comments and prayers and thoughts.
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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
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October
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- Happy day
- Hanging Out
- Grab the camera
- Car rides are good
- Poor Hope
- No change
- Loving the smiles
- Nothing new
- Brod & Ash playing
- EEG yesterday
- Seizures are the 'norm'
- Happy Thanksgiving
- Sleeping
- It just gets worse.
- Still sleepy
- Sleeping
- Lethargic
- To ER
- Not Eating
- Rehab for Children
- Unsure
- Smiles...seizures...puke and poo!
- Time in the Sun
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October
(23)
3 comments:
Still thinking of you...
We'll keep praying and checking for new updates.
Jolene, I just went to your blog site and saw that Hope had a very difficult day on the 9th. I just wanted you to know how much I enjoyed being allowed to share some time with you and your two little angels. My thoughts and prayers are with you.
Marie McConnell ( Ashley J's grandma)
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