I guess that the Heat Miser let a little snow fall on Southtown this year as Aledo, Texas has been blessed with a White Christmas. It was 70 degrees here yesterday. Matt said that he prayed for a White Christmas at church yesterday, so maybe he has a direct line with the Big Guy upstairs. Who knows, but we are having a wonderful time in the winter wonderland. A white Christmas is almost unheard of here in Texas. What a once-in-a-lifetime gift for the kids. I'm sure that they won't forget it.

Here are a few pictures. Merry Christmas to All !! Cris, Kristi, Matt, Jake, Josh, and Jessie.

American Epilepsy Society Meeting in Boston

http://www.hemifoundation.org/

I had a superb weekend in the northeast at the American Epilepsy Society conference, and met some amazing people who have dedicated their lives to helping children with Epilepsy.

Seth Wohlberg, Susan Axelrod, and I met to discuss what we are doing with The Hemispherectomy Foundation, The RE Children's Project (being founded by Seth), and many other topics. Seth's daughter, like Jessie, underwent a right Hemispherectomy for Rasmussen's, and Susan's grown daughter had a life full of epilepsy, but is now seizure free. Susan is obviously very passionate about her work, and that was apparent as she talked to us for nearly an hour about her daughter (who actually called during our meeting), and her work with CURE (Citizens United for Research in Epilepsy) http://www.cureepilepsy.org/home.asp

Susan's passion was only exceeded by her friendliness and warm nature. She's a parent, like us, who's child faced tremendous hardships, and who created something positive. She told how excited that she was to meet "The Rasmussen's Dads". Seth and I both like the name...who knows, it may stick. Anyway, it was a great meeting, and evidently Susan liked it as well, as she blogged about it on the CURE website. Check it out here > http://presidentscorner.cureepilepsy.org/

Earlier that morning we had the honor of meeting with Dr. Frances Jensen of Children's Hospital in Boston. Dr. Jensen will be the president of the American Epilepsy Society in 2012. She also spoke with Seth and I for about an hour. She is on fire about "out-of-the-box" research. She is really excited about how research into Rasmussen's Encephalitis has the chance to help the Epilepsy Community as a whole. I must say, Seth and I are excited about that as well. By the time our meeting ended, I was fired up and ready to take on anything. She is going to make a super president of AES, and I look forward to working with her over the years.

Saturday night, Seth hosted a dinner for some very special guests, many of whom are members of the Hemispherectomy Foundation's Medical Advisory Board (http://hemifoundation.intuitwebsites.com/medical_advisory_board.html )
Clockwise, starting from the lower left is yours truly, then Seth, Philip Overby (Seth's daughter's neurologist from Stamford, CT), Ken Laxer from UCSF, Dr. Andermann from Montreal Neurological Institute (Also worked with Dr. Rasmussen years ago, was instrumental in early Rasmussen's research, and member of the Hemi Foundation MAB), Dr. Hernandez from Cook Children's in Fort Worth (member of the Hemi Foundation MAB), and Dr. Mathern from UCLA (Co-Chair of The Hemi Foundation MAB)

I must tell you, these are extremely smart and talented men who have made their life caring for children like ours. I have nothing but respect for them and their work. It was an honor to meet with them. They gave us some great ideas on next steps with Hemispherectomy Foundation work and Seth's project.

Saturday afternoon, we met with Dr. Aaron Cohen, from Methodist in Indianpolis (and Co-Chair of The Hemi Foundation MAB), along with Dr. McNamara who also did some incredible early research on Rasmussen's Encephalitis.

Dr. Cohen is working with The Foundation as we prepare for this summer's Hemi Foundation National Family Retreat in Indianapolis. In Addition, Dr. Cohen is the Surgeon who, along with The Hemispherectomy Foundation, orchestrated the amazing humanitarian efforts to perform a hemisphereotomy on little Anes from Bosnia. Dr. Cohen assembled the entire medical team, pro bono, and Anes is back in Bosnia seizure free. This story will be airing on "The Doctors" TV show on December 14th. Be sure to set your DVR.

Jessie says to say hi, and God Bless!

Cris

Arm Movement

So, Jessie's OT said that she thinks that Jessie is holding back and has potential to do much more, and sure enough, the little rascal has been holding out on us. Time to turn up the Therapy.

Happy Thanksgiving to All ! Count your blessings, and never forget about all the things that you have to be thankful for.

Blessings,

Cris

Jessie's Bike Riding Progresses

Jessie is really improving on her bike riding! I'm amazed as she becomes more daring and riding with more control. We are almost to the point of removing the handle on the back. Frankly, we don't need it anymore, but Mom isn't ready for it to go yet. She still can't mount the bike on her own, but it is just a matter of time. Go Jessie!!!

Walk Aid - After several Weeks of Use

Now that Jessie has had some time to practice with the Walk Aid, electrical stimulation walking device, she is getting better. Notice that she is not wearing an AFO, and notice the dorsiflexion (sp?) that she is getting without an AFO to hold her foot up. This is all done throught he little device that she is wearing below her knee. It also appears to be reducing the hyper-extension of her left knee.

Texas Tech Jessie

Even with a 2-2 Start for the Red Raiders, Jessie is still the biggest fan.

Walk Aid - Lose the AFO

http://www.hemifoundation.org

Here is a device that we are in trial now with Jessie. I'm not sure if is going to be a good device or not, but the concept is fascinating. It is called "Walk Aid" and is by Innovative Neurotronics. We are going to be doing a trial on it for 2 or 3 weeks and then buy one if it appears to be doing any good.

The way it works, is a little cuff fits around the leg, just below the knee. It send s a small electrical pulse to the nerve, that in turn triggers the muscle to cause the foot to dorsiflex. Because of this action, an AFO is not needed. In theory. The other really cool thing, is that it is supposed to teach the brain how to do this...not just do the work. I tend to be very skeptical about devices like this, but we're keeping an open mind, and I'll be sure to report back.

One downside, is that this puppy runs about $4,500, and we're not sure whether insurance will pay or not. If I knew for sure that it would work, no problem with the money, but when you think that it may just be another product praying on the hopefullness of parents of a child with a brain injury...well then the price tag is a bit harder to digest. I feel certain that we will buy it regardless.

You can watch a demo video here from their website. http://www.walkaide.com/

Or watch Jessie below. Notice carefully that it is indeed causing her to dorsiflex. She is walking rather funny here, but she is just getting used to it. She doesn't walk like this all the time when she is wearing it.

Jessie Learning how to stop on her bike

http://www.hemifoundation.org

Here is a nice video of Jessie learning how to stop on her bike. Now and then she leans the other direction and falls over, but she is getting better and better at stopping and learning to her strong side.

Now if we can just teach her to get started by herself. That will most likely take a few months. Hopefully before Christmas.

Bike Alterations for a Hemi Kid

Some of you have asked about Jessie's bike, and what alterations that we made to it. So I've included below a little bit about her bike and how we changed it.

Bike : Electra Townie - 20 inch. It's pedals are move slightly forward. They call this a flat-foot design, and allows the child to be fairly flat-footed and still sit on the seat.

Toe Clip on left side - This helps to hold the affected foot on the pedal, and they can still get out of it if needed. These can be purchased at any bike shop, but will need a special pedal for mounting. (also sold at bike shop)



Velcro on handlebar on affected side. The rough side of the velcro.




The softs side of the velcro should be sewed on to a riding glove.

Just a regular riding glove. Or, I guess that you could use any glove. Some people do not agree with afixing a childs hand to the bike, but what we found, is that Jessie canot control the bike if one hand comes off. Her foot can fall off and she can maintain stability, but once the hand come off, there will be a wreck. Hopefully, she will overcome that eventually and we will not have to use these type of alterations.

Here is a picture. She can actually rip the glove off the handlebar if she tries really hard.

We also use a push-bar in the back, and run behind her on all rides. We'll do this, until she has much more control. I don't know how long that will be. But you can bet, I'll let you know.

Have a blessed weekend.

Cris

http://www.hemifoundation.org

Hope in One Hemisphere!

Jessie is Riding a Bike

http://www.hemifoundation.org

Jessie participated in a special Bike Camp last week through Kinetic Kids in San Antonio, Texas. The program is called "Lose the Training Wheels". http://www.losethetrainingwheels.org/ It is held in many cities all over the USA to help children with special needs learn how to ride a bike without training wheels. It is a wonderful program.

It lasted all week long, and each day, the kids are on a bike for approximately 1 hour. We are hoping to see more than just bike benefits. We are hoping that this translates to a better gait, better balance, coordination, and more. The bike riding is icing on the cake. Quite frankly, we weren't even sure that she could do it. But she did!!! Hooray Jessie!!!

This is Jessie on the first type of Bike. It is a bike with a "roller-pin" type back wheel and it is very stable. She really can't even fall over, it is so stable. Then, as the week progressed, she was able to move to a less stable back roller (from a level 1 to 8).

Then finally, she was able to go to a bicycle with a regular back wheel and NO Training Wheels!!

Check this out!!!

We've been riding every day since we've been home, and she is getting better and better. She still can't start and stop by herself, but we think that this is just a matter of time. Plus we are getting her a new bike that she can start from a sitting position with both feet on the ground. It is called an Electra Townie. She be in this week.

Also, we have to use Velcro to help keep her left foot and hand on the pedal and handle bar.

I don't post a lot these days, and I am sorry for that. Please understand, that the less I post, the better things are for her. Thanks to all of you that continue to follow Jessie's journey.

Blessings,

Cris

Anes from Bosnia - Surgery Complete!

http://www.hemifoundation.org

Anes, the little boy from Bosnia, is through hemispherectomy surgery now. Holly, the Hemi Foundation HME Director is blogging for the family and for all of us in America.

To Check out his progress. Go To http://anesjourneyforhope.blogspot.com

This is an amazing Story. To read how it got started. See http://www.hemifoundation.org .

Cris

Anes' Story - The Little Boy from Bosnia

Anes' Story

Imagine…
… the joy of meeting your newborn child for the first time.
… taking him home with such overwhelming love and joy in your heart.
… the heartache of learning something is gravely wrong with him and having few answers.
… learning that the medical treatment he needs is not available in your country.
… feeling scared, lost and alone without the knowledge of what to do next.

Can you…imagine it?
Could you live it…if it happened to you?

The Dzebic family in Bosnia and Herzegovina has lived it, for nearly 15 months. In March 2008, Adis and Aldina welcomed a son, Anes, into their world. They took him home and marveled at him. It was only a couple of days before their happiness turned to worry when Anes began to have what they would quickly find out were seizures. They took him to a local hospital, but were quickly sent to one of the few hospitals in Bosnia that can treat pediatric emergencies, “Kosevo”. There they learned that Anes was born with right-sided hemimegalencephaly. There they learned that the Bosnian medical system knew little about his condition and that they did not have the technology, nor the medical staff with the skills necessary to treat a child like Anes. There they learned that a special surgery, called a hemispherectomy, might be able to help their son; only to find out that it was not available in their country.

To read the rest of this amazing story and the role of The Hemispherectomy Foundation in this little boy's life, read here :

http://www.hemifoundation.org then click on the feature story in the middle. Grab a box of kleenex.

Keep up with this little boy's journey from Bosnia to the USA and the miracles surrounding his life at http://anesjourneyforhope.blogspot.com . He is one cute little guy!

I love this foundation!!!!

Have a blessed week.

Cris

Jessie's Surgery was One Year Ago, Today!!

Jessie's surgery was 1 year ago, today.

I'll never forget how happy and relaxed she was that morning. Almost no EPC, and how cute she was walking down the hospital halls with her green hospital garb on with her little butt sticking out. She was giving everyone high-fives. She was so trusting of everyone.

Kristi walked her into the Operating Room, and Jessie JUMPED up on the Operating Room Table with the help of some of the doctors. This was the last time that she walked without a limp. I cried for 15 minutes. Then we all said a long prayer, and began our 10-hour wait.

This was also the last day of seizures for her. It is a happy day and a sad day, all at the same time. But mostly happy.

Jessie is now one-year post-op, and one-year seizure free. I'm praying that the EEG confirms what I just wrote. Thanks to all of you for such great support over the last year and a half. We couldn't have done it without you ALL.

Today is a day to give credit to God, My Lord, Savior, and creator for getting Jessie, our family, friends, and community through a very tough time. There were many time, that without Him, I would have never made this journey.

May God Bless You All .

Cris

Bike Riding

Before surgery, Jessie was a pro at riding her bike. She learned how to ride a bike without training wheels when she was 4 years old. After surgery, we gave her bike away, and began work on a rehab tricycle.

Well, now we think that we may be able to teach her to ride a bike again, so this weekend we bought Jessie a new bike, and began the process of teaching her to ride again. Our Goal this summer is to teach her how to ride a bike again without training wheels. It may be a lofty goal, and we may fail, but you never get anywhere in this life without risking failure.

So, now we start over with training wheels, and a kid who can't grip with her left hand, or keep her left foot on the pedal. Her balance is shot and she is scared to death of falling over. Look out world here comes Jessie!!

First step is to try to get her comfortable on the bike again, then teach her to pedal again. Then depending on the training wheels for balance, steering, anticipation of turns, leaning, etc... Oh my gosh, what have we gotten ourselves into. Anyway, in August, we are going to San Antonio for a special camp called "Lose the Training Wheels". Where we will spend a final week and hopefully lose the training wheels. Check out their website. http://www.losethetrainingwheels.org/

Here is a short video of Jessie back on the horse...so to speak. She has a looooong way to go.

More Swimming

Summer is for Swimming

INAUGRAL DREAMS ON WINGS 5K TAKES FLIGHT

http://www.hemifoundation.org/

INAUGRAL DREAMS ON WINGS 5K TAKES FLIGHT

Jessie Hall (center) sounds the bull horn for the 5K race at The Hemispherectomy Foundation's Dreams on Wings event on Saturday, May 16.

The inaugural Dreams on Wings 5K in Weatherford, Texas held on May 16, 2009 dawned gray and WET. Despite a steady rain, runners and walkers laced up their running shoes and lined up to support The Hemispherectomy Foundation. Many thanks go to our major sponsor, Parker County Physical Therapy, for opening their doors to allow a dry place for pre-and post-race activities!

Pictures honoring the children were to line the race course but due to the rain, were placed throughout the therapy center.

Following the race, many runners and walkers gathered inside Parker County Physical Therapy to enjoy some great post-race food and attend the awards ceremony.

The Dreams on Wings 5K was a HUGE success! Proceeds raised will sponsor seven families for the July Hemispherectomy Reunion/Conference in Baltimore, a scholarship and camp tuitions! The BEST part is that ten special families from all over Texas and Oklahoma were honored at the event. Feedback from the parents has been incredible!

The rainy weather did not slow down these kids! Several “Hemi Kids” walked the Dreams on Wings 5K with family and friends.

The Dreams on Wings 5K started as a fundraiser. Instead, this event soared high and became much more than anyone could have imagined. Everything that happened on May 16, 2009 was a compilation of what the Hemispherectomy Foundation is all about: Supporting families by providing a setting where they can meet and talk to others that are walking in their shoes; providing a fun event that parents feel comfortable bringing their child to – where everyone understands issues and limitations; a vehicle for raising awareness of these miracle children in our communities; and finally, a fundraiser of monies to be used to support these children, to provide scholarships, camp tuitions, life aids, and research.
Special certificates were presented to our honorees.

A big TEXAS THANK YOU to all our sponsors that supported the inaugural Dreams on Wings 5K event. This race had, without a doubt, the BEST post-race food and goodie bags seen in North Texas!

Plans are already underway for the 2010 Texas Dreams on Wings 5K. If you are interested in learning more about hosting a Dreams on Wings 5K event in your area or would like to sponsor or volunteer for the 2010 Texas event, contact Kristi Hall at kristi@hemifoundation.org. Information packets will be available soon.

The Time to Sign-Up is NOW !!!!

Only 2 weeks til Dreams on Wings. On May 16th, You can walk it, You can run it, but DON'T miss it! It's early enough that you can do the race, and have the rest of your Saturday.
Click here and sign-up now : http://www.hemifoundation.org

We have a growing number of people that will be running or walking the race at home, and in other states. These are our "Virtual Angels" Some people will even be picking their own time to commit to 3.1 miles. So, there are NO excuses not to participate. Register NOW and come to Weatherford on May 16th or be a "Virtual Angel".
Check out some of the Hemi Foundation Kids that you'll be helping : http://hemifoundation.intuitwebsites.com/photoalbum.html

or Check out The Hemi Foundation YouTube Channel : http://www.youtube.com/user/Hemiadvocate

Also, check out our wonderful Sponsors for the race : http://hemifoundation.intuitwebsites.com/5k_Sponsors.html

And as a last thought : The best thing to fight a flu is to eat right, drink plenty of fluids, get plenty of rest, and exercise. Well, we can't help with all but the rest. The race will have plenty to drink, eat, and exercises, so come on out and say no to the Piggy Flu! :-)

Remember, register on-line at http://www.hemifoundation.org

God Bless,

Cris

No More Keppra (Hopefully)

http://www.hemifoundation.org

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,

Cris

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 http://www.hemifoundation.org 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.

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. http://www.allardusa.com/pdf/Egg_Letter.pdf

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.

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.