Seizures Have Returned

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

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

In for Follow-Up MRI one Day, Brain Surgery the Next

Jessie is now sporting a new foot-long scar on the back of her head thanks to the most recent round of shunt-revision surgery that took place on Friday morning.

The good news, is that she is already home and doing GREAT, except for a huge scar running down the back of her head.

On Thursday, we went into Cook Children's Hospital for a routine, follow-up MRI. After the scan, a nurse came in and asked us to stick-around. We knew this couldn't be good. So they found that the Low-Pressure VP shunt that they put in two months ago was working great, and her venticles were nearly normal size again. Unfortunately, there was now a subdural pocket of CSF on the top of her brain. This was caused by the brain colapsing to normal size after being under pressure for so long. Unfortunately, this was pushing the brain past mid-line into the Hemispherectomy space and also pressing on the brain stem.

Jessie was experiencing no symptoms of pressure, in fact, most of her symptoms from earlier hydrocephalus had resolved.

So, she was admitted for surgery and Friday morning, the shunt was revised with a new branch of tubing to drain from this area as well. The scar is great for halloween.

Jessie is doing great, home and playing. We'll get another MRI in a week or so. Hopefully things will be better then.

Thanks for all the prayers and encouragement from our friends an family.

Cris

Straight "A"s

We're so proud of Jessie for her first 6 weeks of school, she received straight "A"s. She was quite pleased with herself, and that was the best part of it. Hopefully if she likes getting good marks, it will motivate her to keep it up.

If only we could see this from our "Fully Brained" Boys. Actually, they did pretty well also.

The first 6 weeks is always the easiest, but it was a GREAT way to start for Jessie, considering that she started the year off with shunt surgery due to hydrocephalus.

Also, The Hemi Foundation Christmas Card fund raiser has started. Please buy your cards this year in support of these amazing Kids. You can check out the ART work and order from The Hemi Foundation at
http://hemifoundation.intuitwebsites.com/XmasCards2010/2010Christmascards.html

Blessings,

Cris

The RE Children's Project : Finding a Cure for Rasmussen's Encephalitis

I just returned from the RE Children's Project Conference - The goal to one day find a cure for Rasmussen's Encephalitis.

The details and summary of the Conference can be found at :
http://rechildrens.com/blog/

Be sure to pass the word on Facebook, Twitter, and your personal Blogs. We desperately need to get the word out.

Thanks and God Bless!

Cris