Monday, April 27, 2009

No More Keppra (Hopefully)

Jessie is now completely off of Keppra, and no seizures thus far. We have been tapering for a couple of months. So all that she is on now is 100mg of Tegretol, 3 times per day and 5-10mg of Adderall.

She has been having some episodes where her tummy hurts for about 30 seconds and then stops. These may be seizure activity, but they don't look to be so. (only an EEG could tell for sure) She still responds to commands and can follow instructions during the episodes, but there is definitely something going on...just not sure what. When they are done, she isn't tired and she doesn't have a headache, so right now we are calling them episodes.

She had these before reducing Keppra, but has been having a few more lately. We also plan to take her off of Adderall for the summer. Currently she doesn't take it on weekends. We currently see more and more Jessie as we near the 1 year mark of surgery. On Saturday, we went to the baseball game, and she laughed and talked throughout the game and all the way through dinner. That is so much the way she was before she got sick.

Please pray that these episodes are not seizures, and that she continues to progress.

God Bless,


Sunday, April 12, 2009

Dreams on Wings 5K : May 16th : Register Now!!!

The Hemispherectomy Foundation "Dreams on Wings 5K" is just around the corner, so be sure to log on to and register for the run/walk. This fund raiser will help children all over the world that went through the same surgery as Jessie.

Also, we are accepting sponsors for the race with all kinds of good advertising for the sponsors. If you are interested in sponsorship, please contact Kristi at 817-312-2265.

Sunday, April 5, 2009

Cook Children's Transitional Care Unit Weekend at Camp John Marc

This weekend, we were treated to the Cook Children's Transitional Care Unit Camp at Camp John Marc south of Cleburne. Cooks does this camp every year for children whom have spent time in the Transitional Care Unit and their families. It was a wonderful experience, and we had the honor of meeting almost 30 other families with tragic, yet miraculous stories of brain rehabilitation. We will all get to go until Jessie is 12 years-old. At that point, she can still go, but we have to stay at home. She gets to go by herself.

We spent a marvelous weekend at Camp John Marc, and the kids got to do all kinds of fun stuff. We had a cabin to ourselves, and got to see all of the staff from Cook Children's hospital in-patient rehab unit. It was a memorable weekend. Below are a few pictures.

This is Candice and Josh. Candice is a volunteer who stuck with our family and showed us the ropes. She is a Criminal Justice major at UNT, and this was her first year to volunteer at the camp. Before, she had always been here before with her brother who was inured by a drunk driver and spent time on the unit. Matt asked her if she could come home and live with us. She was very sweet. The same accident that injured her brother took her Mom's life.

This is "Sugar Momma" or as Jessie called her at Cooks "Sugar Plumb" Everyone loves Sugar Momma and she loves all the kids. This lady needs a raise, because she keeps every one's spirits alive when you are on the rehab floor. Jessie loves her.

This was our "Egg Drop" physics project. We Lost! :-( Our Egg broke. But it was fun.

This is what the kids like the most. The Ropes Tower!

If you make it up, you get to go down the Zip Line!!!!!!!!!

Even Old Dad gave it a shot.

And Made it.

Jessie can't do it until she is one year post surgery, but she enjoyed watching. She'll do it next year.
We met another Hemi family there. The little girl had her Hemispherectomy due to an in-utero stroke that caused intractable seizures.
All-in-All, it was a growing experience for all of us. When you think that you have problems in life, go to a camp like this, and you will meet people with stories that will put perspective back in your life. It was a very humbling weekend.
We ended it with a beautiful outdoor church service in a chapel in the woods. A perfect end to a perfect weekend.
God Bless and have a GREAT week. Cris

Spring Break Camping at Lake Whitney!!

This Spring Break, the Hall Zoo took off for Lake Whitney to do a little bit of back-to-nature family time. We had a great time, and this was the first time that we had all been camping since the week before Jessie's surgery. That was the weekend of the big State Championship Win of the Lady Cats Softball Team.

Here are a few pictures of Spring Break '09.

Gotta have a good campfire.....

For SMORES !!!!!
Time to go fishin' .
Don't forget to get the worms.
I said "GET" the worms, not "EAT" the worms, Josh!!! (No Worms were harmed in the making of this Blog".
Found the Playground. It wouldn't be a camping trip without a playground.

Jessie agrees.

Have a stick, Dad.

Boys and fire. Nothing ever changes, does it?

The Brave Campers, Kristi, Jessie, Jake.
It was a fund trip. Too short, but fun. I know that I had a good time, because I was exhausted when we got home. I think that I'm ready for "Hotel Camping". ;-)
Give your kids a hug today and Have a Blessed week. Cris

Jessie's new braces!

Jessie received a new brace a few weeks ago. It is called a Kiddie Gait and is made by Allard USA. We'll let you know how it works out. She broke one after only a few weeks, but these little braces are nice an light, and are very easy to put on. Like I said, I'll report on our opinion of this device later. Here is the link to some of their marketing material.

She also got this little knee brace too. She wears this one, when she doesn't have an AFO on. It is supposed to help keep her from hyper-extending her knee. Th jury is still out on this one too, but it seems like it works. It tends to slip down after a while. Jessie never complains about wearing this stuff. Always smiling.

Wednesday, April 1, 2009

The Hemi Foundation "Dreams on Wings 5K" Fund Raiser

Just wanted to give a quick plug to the Hemi Foundation "Dreams on Wings 5K". All proceeds to benefit the Hemi Foundation and to help children and their families all over the world that went through the same surgery as Jessie.
Please register on-line and come out and run the race. Or, if you don't want to run the race, sponsor the race with your donation. For sponsorship, call Kristi at 817-312-2265.