Unfortunately, it looks like Jessie is having seizures again. She is currently in the EMU at Cook Children's in Fort Worth, and the epileptologists believe that she has some seizure activity coming from her hemispherectomy side, from a missed connection and brain tissue left behind in the first surgery. It is deep tissue, and hard to pick up on the scalp EEG.
There is some activity on that side, but thank God, there is no activity coming from her good left side. They did a SPECT Scan (like a PET only it looks at blood flow vs sugar uptake...idea being seizure tissue causes more blood flow to seizure area). The results from the SPECT are not in yet.
In addition, they will do a T3 detailed MRI tomorrow. At that point, they will make the decision on what to do.
Today, she required Ativan to stop a status seizure. She is not doing well, and is eating very little. They are slowly increasing her tegretol, however, we have told the epileptologist and surgeon that if they can pinpoint the tissue and connection, that we want it out and NOW! AEDs and other meds have very little long-term effect on Rasmussen's Encephalitis inflamed tissue.
We continue to trust in God and His Plan, and ask for your prayers for Jessie. We believe in the power of prayer and good medical treatment.
Blessings to All,
Cris
Tuesday, November 30, 2010
Sunday, November 7, 2010
The Hemi Lighted Forest of Hope!
Christmas Time is coming early this year, so if work and life is getting you down and you need a good shot of "Feel Good". Check out this story, and especially the link to the images and audio. You'll be glad that you did. This is Kristi's Mom and Dad who did all of this and we hope to see it in the national spotlight soon. Enjoy and Blessings!! Cris
The Hemi Lighted Forest of Hope is a celebration of LIFE and HOPE for children all over the world, who have had their lives turned upside down, in a battle against intractable epilepsy. These children all underwent radical brain surgery in HOPE of living a life seizure free. A tree will be lighted for each child who has undergone Hemispherectomy Brain Surgery and who has registered with The Hemispherectomy Foundation. These ...trees and lights represent a celebration of each child’s HOPE for a life without epilepsy.
This year, 421 trees will be lit and each year more trees and lights will be added to the Hemi Lighted Forest of Hope.
The Lighted Forest Facts :
65,000 lights or 3.47 Miles of continuous lighting
4.5 Acres of Trees
2,000 Feet of underground wiring
450 Extension Cords
440 String of Multicolored LED Christmas Lights
Amazing Vido and Story Here. This is REALLY Cool !
Images and Audio - http://blogs.wyomingnews.com/blogs/shutterspeed/
Story - http://www.wyomingnews.com/articles/2010/11/07/news/01top_11-07-10.txt
To find out more about The Hemispherectomy Foundation, go to http://www.HemiFoundation.org/
Google htpp://www.google.com
The Hemi Lighted Forest of Hope is a celebration of LIFE and HOPE for children all over the world, who have had their lives turned upside down, in a battle against intractable epilepsy. These children all underwent radical brain surgery in HOPE of living a life seizure free. A tree will be lighted for each child who has undergone Hemispherectomy Brain Surgery and who has registered with The Hemispherectomy Foundation. These ...trees and lights represent a celebration of each child’s HOPE for a life without epilepsy.
This year, 421 trees will be lit and each year more trees and lights will be added to the Hemi Lighted Forest of Hope.
The Lighted Forest Facts :
65,000 lights or 3.47 Miles of continuous lighting
4.5 Acres of Trees
2,000 Feet of underground wiring
450 Extension Cords
440 String of Multicolored LED Christmas Lights
Amazing Vido and Story Here. This is REALLY Cool !
Images and Audio - http://blogs.wyomingnews.com/blogs/shutterspeed/
Story - http://www.wyomingnews.com/articles/2010/11/07/news/01top_11-07-10.txt
To find out more about The Hemispherectomy Foundation, go to http://www.HemiFoundation.org/
Google htpp://www.google.com
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