Complex Partial and Simple Partial Seizures Confirmed on EEG

During the past 24 hours, the neurologist at Cook Children's caught enough on the EEG to Confirm that Jessie is having Complex and Simple Partial Seizures. Weekends at the hospital are slow, so we don't have a detailed report yet, but we hope to find out on Monday more info such as origin point of seizures, and how many subclinicals seizures are going on.

We pushed the button (seizure button) 10 times just in 24 hours, so there are a lot that we saw and probably more that we didn't.

She is on Tegretol again, started today, and the seizure activity immediately went down. We'll see what Tegretol does over the next few weeks, as we get a new MRI, and as 2nd/3rd opinion.

Right now, we don't know the next steps, and that could take weeks to determine. We appreciate all of your prayers as we work through this difficult time.

On the positive side, Jessie is in GREAT spirits, as always. She loves life and is still the happiest kid that I know.

Blessings!

Cris

Seizures or Not? Unfortunately it Looks Like Seizures

Over the past two years, Jessie has been seizure free. Occasionally, she would have an upset stomach, but for the most part, we attributed this to GI issues. They were short, and didn't disrupt her ability to live a normal life.

Starting last Sunday, she began to get a twitch in her right eye during these episodes, so we immediately went to her pediatric epileptologist at Cook Children's Hospitl, Dr. Malik. We were so thankful that he got us so quickly. Jessie also underwent a 30 minute EEG. Nothing showed up on the EEG, and so Dr. Malik suggested that we wait and see what happens. We agreed.

Yesterday, we captured a video of one of Jessie's Eye episodes. She is now having them a couple of times per day. They start with an upset stomach and she sometimes vomits, then this right eye twitching begins.

Click Here to View on YouTube : http://www.youtube.com/watch?v=LUIu5TUFllU
The only reason that she is touching her nose, is because we ask her to do this to try to suppress the activity. It obviously doesn't work.

After seeing this video, Dr. Malik believes that they ARE seizures, so Jessie has been scheduled for a Video EEG and some time at Cook Children's Hospital's Epilepsy Monitoring Unit. She will be there starting 1st thing Friday morning.

I have always been very honest on this blog, and I will continue to be so. When things are going good, it is fun to read, but when things are bad, not so much.

Thanks to all of you for your prayers over this difficult time. Please continue your prayers for Jessie and God Bless you for your words of support.

Cris
Jessie's Dad

http://www.hemifoundation.org

2010 Daddy Daughter Dance

I am so proud of this little girl, and tonight, she was my lovely date! The 2010 New River Fellowship Daddy Daughter Dance was a big hit. Jessie started talking about it as soon as I got home from work. She wanted to make sure that we didn't miss a dance.

So, while mom and Jessie primped and made pretty, and did the best that I could with this old man, and we made a cute couple thanks to Jessie. She helped me pick out my suit and tie, and even my shoes. She said for me to wear my "Doctor's Shoes". (leather wing-tips)

So, after being asked, "Is it time to go now?" about 100 times, we finally left for the church gymnasium. Inside, we had our picture taken, had punch and cake, and dance our hineys off. We danced to MC Hammer's "Can't Touch This", "The Chicken Dance", "Cotton-Eyed Joe", and "Dance with Cinerella". A Magical Night!

And of course, Jessie's personality always leading the way to having a good time. Did I tell you that I Love this girl.

So until Next year's Daddy Daughter Dance, I guess we will have to practice in the living room as often as possible.

Now Jessie is ready to run The Hemi Foundation Dreams of Wings 5K. May 15th in Weatherford. Register now to run it in Weatherford or as a virtual runner. There are only a few more days left to register.

Register at http://www.hemifoundation.org

There will be a National Television Show filming at this event, so don't miss out! Great Food, Great Bands. It will be a PARTY!!

Jessie's Dyna-Splints

Jessie received two new splints this week to wear at night. These are from DynaSplint (http://www.dynasplint.com) and are two help her loosen her hand and ankle.

The First is for her ankle, and basically pushes up on her foot to stretch out the muscles which tighten over time and point her toe downward. She doesn't mind sleeping in them and so we will watch and see what kind of results she gets.

This one holds her finders out and her hand in an upward position. I can't beleive that she sleeps in these things, but she doesn't seem to mind. This means that she doesn't have to wear them during the day. It's like therapy while she sleeps.

She was also fitted for another day brace for her leg to keep her from hyper-extending her knee, but as soon as Kristi and I saw her walk in it, we said "no way". It was like 2 steps backward, plus it didn't keep her from hyper-extending her knee.

We'll continue to use the Walk-Aid, and the knee cage at home.

Cris

http://www.HemiFoundation.org

Dreams on Wings 5K Run / 1 Mile Walk on May 15th : Register Today

Please Join us for the Dreams on Wings 5K Race to Benefit Hemi Foundation Children!
You can register NOW on the links below or by printing a form for mail!
Don’t Live Near?, Sign-Up and be part of the many Virtual Runners!

http://www.HemiFoundation.org

Saturday, May 15, 2010
Weatherford, Texas

5K Chip-Timed, Certified Course
Late registration 6:30-7:45
Race starts at 8:00 am

The Hemispherectomy Foundation is a non-profit organization dedicated to providing emotional, financial, and educational support for individuals and their families who have undergone or will undergo a hemispherectomy, or similar brain surgery. All proceeds go toward providing college scholarships, trade school scholarships, camp fees, life-aid equipment, travel expenses, and other aid to these children. For more information about the foundation, go to www.hemifoundation.org.

Click HERE to register online

Click HERE to download mail-in registration form.