Saturday, October 30, 2010

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.


Wednesday, October 13, 2010

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



Sunday, October 10, 2010

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 :

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!