Goodbye Keppra, It's Time to Go !

http://www.hemifoundation.org

Last week, we were given the go-ahead to start tapering Jessie off of one of her seizure medicines called Keppra. Dr. Vining, Jessie's neurologist at Johns Hopkins, reviewed her latest EEG and determined that there was no apparent seizure activity. (Praise the Lord !)

So we've began the taper, which will last approximately 6 weeks. At the end of that 6 week period, Jessie will only be on one anti-seizure drug, Tegretol (100mg, 3 times daily). This is actually a pretty low dose too.

Removing Jessie from this drug is not without risk. She could start seizing again, and Diana Pillas and Dr. Vining warned us of this risk. However, the upside is that Jessie will have less of a clouded mind at school. The bottom line is that seizure medications slow down the brain, so the less the better so long as seizures are not present. Please pray that this taper goes well, and that Jessie never takes Keppra again. We are excited and scared out of our mind, all at the same time. But this is a good thing that we have to try.

I'll let you know how it goes. It is estimated that as many as 50% of hemispherectomy patients have seizures that return. Generally, they are not as bad, and less frequent. We'll see how it goes. Dr. Carson left almost no brain tissue on the right side, so we hope that there is nothing left to seize. It gives us something to hang onto anyway.

Many of the children that had surgery about the same time as Jessie, in various parts of the country, have had seizures return. It is still a VERY Real possibility. Things have gone so well so far, and I hate to jinx it, so we remind ourself all the time that it could happen.

Positive thoughts....positive thoughts....positive thoughts....prayers...prayers....prayers.

I hope that everyone has a Blessed Spring Break with lots of family time and lots of rest.

Cris

Lifting Grace! Lift-A-Thon to Honor Grace Wohlberg and benefit Hemi Foundation

Swimming on March 6th !!??!!

OK, this is nuts! Our crazy kids decided that they were going swimming today and you know what? They did!!! This may be the earliest in the year swim yet...almost the Polar Bear Club.

A year ago, Jessie could barely swim, because she was having so many seizures that we thought that she would drown. Now she's swimming fridgid waters...that CRAZY Girl.

Here's a few pictures of the kids. Cris

2009 Cowtown 5K

It's Off to the Races!! It's Cowtown Marathon Time again, and as usual all of Aledo is present among the thousands of other racers from all over the world. Aledo always makes a HUGE showing, and every year picks up awards for the most runners.



Goofing around before the races starts.

Trying to stay warm.

Finished !! These are the kids WONDERFUL PE Teachers. Mrs. Baucum and Mrs. Bastian do a wonderful job preparing these kids for the race!


Jessie Finished 3.1 Miles (with only one shortcut)

Almost finished!

The Whole Hall Zoo finished!

Now we are prepared to run the Dreams on Wings 5K on May 16th to Benefit the Hemispherectomy Foundation. Kristi is heading up this event and it should be an Incredible Event. If you are interested in registering, just click here >>>http://hemifoundation.intuitwebsites.com/5kFlyer.html

God Bless!