Eliza: Eliza update 3/10 2pm

New to our blog? The story starts here.

Eliza Crowley Jackson was born on January 29, 2006. Before her birth, we had no reason whatsoever to believe she would be anything but a healthy baby girl. But as soon as she was born, it was clear that all was not well. Eliza had lesions (holes) in her brain, seizures which could not be controlled by medication, a shunt to control hydrocephalus, and many digestive health issues, among other things. She had no voluntary movement, was fed special formula by a pump through a tube in her abdomen, had no muscle control or development of any kind. She was all but in a vegetative state, and despite having received some of the best medical care in the world, was not expected to survive her first year. In fact, on April 9, 2006, when Eliza was ten weeks old, she was discharged from the NICU to come home to die. But even as Eliza defied diagnosis or a cure, she also defied predictions. For a terminally ill child, she lived a remarkable almost-three years, passing away peacefully at home on December 12, 2008.

This blog is a collection of emails we have sent to family and friends over the course of Eliza’s life. The content ranges from medical updates to theological reflections to family photos. The entries appear here in reverse chronological order, so go to the oldest entries in the archives first if you want to read her story from the beginning. We have updated the blog irregularly, mostly whenever there was medical news, a new lesson we were learning, or a photo worth sharing.

We pray that you will be blessed to learn of our family’s hope. “But in your hearts acknowledge Christ as the holy Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have” (1Peter 3:15).

Want to contact us? Send us an email at shdbjackson@yahoo.com.
Want to keep up with what Daniele has been writing recently? Check out http://abitmoreofme.blogspot.com.

Monday, March 13, 2006

Eliza update 3/10 2pm

Dear family and friends,

The official report on the EEG is as expected (Sam is considering a new career as an EEG technician!). No seizures, but the brain activity--though more continuous than before, which is an improvement--remains abnormal. As a result of the absence of seizures, it appears that the doctors will not increase Eliza's dose of phenobarbitol, one of the two anticonvulsants she is still taking. The level in her blood has already dropped below therapeutic levels, and instead of weight-adjusting her dose to maintain an effective level, the doctors will simply let her outgrow the dose as she gains weight as long as she remains seizure-free.

After an apparently stressful morning of assessments and blood tests, etc., Eliza spent a couple of hours sleeping in my arms; Sam's at the hospital now, hopefully giving her a few more hours of snuggle time. The doctor and nurse practitioner plan to do nothing new today except increase her feedings a little bit; otherwise, they just want her to rest and work on gaining weight. So there hopefully will not be anything else to report for today. We'll keep you posted if there is.

Love,
us

New to our blog? The story starts here.

Slideshow of Eliza's first year

Online photo album

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Fall 2007

Photo by Paul Wingler

Photoshows of our family

Check out Eliza's new ride: a Bundleboo!

Monday, March 13, 2006

Eliza update 3/10 2pm