Jessie's Blog

Eight Months Seizure Free and Christmas in Wyoming

2011-12-29T20:01:00.003-06:00

The less that I blog, the more that I know that our life is settled into a "new normal". It is not a normal like most of you know, but it is nevertheless a normal that is pleasant, purposeful, and possibly even filled with hope for the future.

Jessie has been seizure free for 8 months now, and with each passing day, comes freedom to move our life forward. This Christmas, we traveled to Wyoming for an amazing week with Kristi's parents. We've been trying to make this trip for three years, but each time, Jessie was in the hospital or not capable of traveling.

But this year, we made it! Horray!!

On the way up, we were able to attend the 2011 Hemi Jam, Concert, benefitting the Hemispherectomy Foundation http://www.HemiFoundation.org . Dan and Saasha Huston did an outstading job on this benefit, bringing in amazing talent and lots of funds to help children impacted by hemispherectomy brain surgery. It was a fun time for all. Gibson Huston was the star of the show with his Elvis act.

Once we made it to Wyoming we were finally able to see The Hemi Lighted Forest of Hope! http://www.hemiforest.com/ . Wow! This was an amazing display of lights, honoring each and every child who has endured Hemispehrectomy. Each brightly lit tree represented a Hemi Child. There was even one for Jessie. If you haven't adopted a tree/child, there is still time to do so at http://www.hemifoundation.org .

Gary and Nancy Kelley (Kristi's parents), did an amazing job with the lights, trains, and hospitality. Gary put up over 90,000 lights, built an indoor train display, and gave hayrides each night since October. Nancy served hot chocolate, and entertained the thousands who came to see the lights and display. A big thanks to Gary and Nancy for all of their hard work.

So, I must say that it was a special trip. Jessie is seizure free, and we finally got to see the Hemi Lighted Forest of Hope! It is all about HOPE!

Merry Christmas and Happy New Year to All !

Cris and Kristi Hall

Hemi Redo Summary - Success

2011-06-02T09:43:00.002-05:00

Jessie has been seizure free now for 1 1/2 months, and although we are overjoyed and feel very blessed, we are also grounded and realize that you never know what tomorrow will bring in the world of Epilepsy and our kids.

Nevertheless, I thought that I would share some information about the tissue that was removed and the symptoms that it resolved. I do this in hopes that other kids who may be dealing with the same types of recurring seizurs may benefit.

Jessie's returning seizures were characterized by:
1) Discomfort in the stomach (Aura if you will), followed by...
2) Partial, but not complete loss of cognitive awareness. She could still follow basic commands, nod yes or no. But she obviously wasn't "all there". She never fell to the ground.
3) Ipsilateral (same side as hemispherectomy) eye lid twitching. This was very scary, because we thought that the the seizures were coming from the contralateral good side of her brain. This just goes to show you that the "right controls the left and visa versa" isn't 100% for all tissue.
4) When it was over she heaved a heavy sigh, and wiped her nose.
5) Early on, the EEG was inconclusive. As the seizures progressed, the seizures were present, but they couldn't pinpoint 100% the origination point. Even with PET, SPECT, MRI, and EEG it was still a guess for the 2 Redo surgeries.

Jessie's original Hemispherectomy was anatomical. A word of caution that this doesn't necessarily mean everthing is taken out. It is not black and white, but more of a continuum when conceptualizing the varying degrees of hemispherectomy from "hemisphereotomy" to "Anatomical" and everything between, including "functional".

So the neurosurgeon at Cook Children's, in Jessie's first Re-do, tried to make sure everything was disconnected by retracing the corpus collosum. She was having seizures again soon after her first redo. It was obvious it didn't work. He didn't remove any tissue, because he felt that it was all disconnected.

The second Redo, the one that finally seems to have worked, went after small "button-sized" pieces of tissue in the frontal (Gyrys Rectus), Temporal, and Occipital areas. (I don't say lobes, because there were no lobes left from her original surgery).

The surgeon has decided, because of Jessie, that he plans to remove the Gyrus Rectus from now on in most hemispherectomy cases, especially Rasmussen's kids. This tissue, about the size of a few shirt buttons in the frontal lobe near midline seemed to be causing all of her problems.

Another reason that I want to share this, is that I was on Youtube last night, watching kids with post-hemi seizures, and some presented very similar to Jessie's. Her seizures are also on Youtube to compare. I know all kid's brains are different, but maybe this will help others, especially if the Gyrus Rectus does indeed tend to control ipsilateral eylid twitching.

See everyone in California for the Hemispherectomy Foundation Conference and Family Reunion!

Cris

Jessie and Her Multiplication Facts

2011-06-01T20:56:00.003-05:00

In Aledo, 2nd Graders have to learn their Multiplication Facts up to 5's at the end of the year. Well, Jessie was in the hospital during most of this time, so she has been working hard to get the facts straight.

This is a video of Jessie doing her multiplication facts. My beautiful daughter will finish 2nd Grade this year, has one-half of a brain (literally and anatomically), has been in the hospital over 200 days in the past 4 years, 5 brain surgeries, and missed 3 of the 5 weeks while her classmates learned their multiplication facts. Am I a proud Daddy? You bet I am!!

Also, I have to point out that 4 weeks ago she was having 60+ seizures a day, and slept most of the school day away in the nurse's office. It is absolutely amazing what half a brain can do when the seizures are eliminated on the bad side.

Here is the video, and sorry again about bragging.
http://www.youtube.com/watch?v=lueBxxNCMwE

See everyone in California in July. Horray only one month away!

Cris

5 Weeks Seizure Free and Helping Make Breakfast

2011-05-28T08:24:00.003-05:00

Today, Jessie is 5 weeks post Hemispherectomy Re-do, and we are happy to report that Jessie has been seizure free since surgery. We are cautiously optimistic about her seizure freedom, but very happy with the results so far.

Her neurologist at Cook Children's is taking her off of Vimpat, and she will continue on Tegretol for the forseeable future.

This morning, Jessie celebrated by helping make breakfast. Here is her one-handed egg breaker from Walmart's "As Sold on TV" section.

http://www.youtube.com/watch?v=tTYg6F-j-aE

Check out what is written on her t-shirt.

For those of you going to California Disneyland this summer, for the Hemi Foundation Conf. and Family Reunion, we'll see you on July 7th. If you haven't registered yet, do so ASAP. http://www.HemiFoundation.org .

Best Regards, Cris

Jessie Update : 2 weeks Post Surgery

2011-05-06T11:19:00.002-05:00

Just a quick update on Jessie. She is recovering well, but not quite to
baseline, but progressing well. She will start back to school on Monday.

She has been seizure free now for over 2 weeks, so we are cautiously optimistic.
Dr. Donahue at Cook Children's removed only three small tissue parts (the size
of peas) from her temporal, occipital, and frontal areas. These little pieces
of tissue were really all that remained in the right hemisphere, and he even
thought those were disconnected.

Prior to this surgery, her 2nd Hemi Redo, she was having 60+ seizures a day.
(complex partial, where she had some awareness, right eyelid twitching)

We are too cautious now to claim victory over seizures. Ask me in 10 years or
so. But right now, things are good.

Jessie will be attending Summer School to make up for some of what she missed,
and then Constraint Therapy at UAB before coming to Anaheim for the Hemi
Foundation Conf.

We look forward to seeing many of you at the Dreams on Wings 5K and at The Hemi Foundation Conference and Family Reunion at Disneyland this summer.

If you haven't signed up for the walk/run, you can still do so at http://www.HemiFoundation.org .

Thanks for all of your prayers and support.

Cris and Kristi

1 Week Post Op for Re-Re-Do

2011-04-27T09:51:00.002-05:00

One Week Post 2nd ReDo Surgery
Jessie finally at a few bites of food yesterday, and we have not seen any seizures so far, so we are cautiously optimistic. A week into her first re-do, we had already seen three seizures. So far, none yet this time.

They took small bits of tissue from the frontal, temporal, and occipital lobes. Since her first Hemi was anatomical, there was very little tissue left. These pieces were about the size of a pea. We still have not received the pathology report to know if Rasmussen's was present.

The interesting thing, is that Jessie is acting much more like her first Hemispherectomy, rather than the first redo. I do believe that they got some tissue that was still connected, as she is having a much harder time getting through this recovery than her re-do in December 2010. She is having a hard time walking, and still can't walk without help.

Her right hand shakes with tremmors, and she has a hard time doing fine motor skills. This is her good hand. She is also making grimmaces with her face. Hopefully this is all her irritated brain healing from the surgery.

Only time will tell. I anticipate that she will get to go home by the weekend.

I feel certain that she will be at the 2011 Dreams on Wings 5K to cheer on the runners. If you haven't signed up yet, please do at http://www.HemiFoundation.org . Remember, you can be a virtual runner, if you can't actually make it to the run/walk.

Thanks for your thoughts and prayers,

Cris and Kristi

5th Times a Charm - More Brain Surgery

2011-04-06T10:12:00.001-05:00

After input from many doctors, it has become apparent that Jessie needs to have brain surgery yet again. Including shunt and revision, this will be her 5th brain surgery. Hopefully, we can finally put an end to her seizures with this procedure, but there are no guarantees.

There are small amounts of tissue left in her frontal and temporal lobes that may be the cause, but even with EEGs, MRIs, SPECTs, PETs, etc.., no one can be sure.

She can't live with the seizures, and even on her increased medications she has 5 or more a day.

Right now, the plan is to have the surgery in mid-to-late May. She would continue with school until the day of surgery, then finishing out her school year in the hospital or with home-bound instruction.

The surgery will be done at Cook Children's Medical Center by Dr. Donahue.

Blessings,

Cris and Kristi

Life is a Rollercoaster

2011-03-08T21:33:00.016-06:00

We’ve all heard that phrase or saying before. “Life is a rollercoaster.” Although is it a bit cliché, it most certainly describes the last three years for Jessie. The past 9 months have been full of twists and turns: hydrocephalus, shunt surgery, surprise brain shift over mid-line and subsequent shunt revision, and an attempt before Christmas to stop the seizures originating from the right side of her “brain” by disconnecting some remaining frontal and parietal tissue. Did you notice the word “attempt”? Unfortunately, despite best efforts by our wonderful doctors at Cook Childrens Hospital and consultation from Drs. Carson and Mathern, the seizures are still very present. In January, we were hoping that they were a result of a healing brain – after all, Jessie has been put through the mill since last August. Perhaps she just needs some time to heal.

The reality is that we are dealing with tissue affected by Rasmussen’s Encephalitus. A relentless disease that just doesn’t stop. To learn more about RE, go to http://rechildrens.com. Learn more about the great work our good friends Seth and Deb Wohlberg are doing. Their daughter Grace is affected by RE as well.

Having said that, Jessie’s seizures have been slowly increasing in number and severity. . . . wearing her out and causing her to hit the hay by 6:00 pm a lot of nights the past 3 weeks. We are looking at the possibility of precocious puberty and the effect of hormones on seizures. We were also scheduled to go into the EMU the weekend of March 5 but seizures increased to over 30 by the Wednesday before so we went in early for VEEG and MRI studies. In the end, we left the EMU with a plan –Vimpat and Klonopin have been added to our arsenal of AEDs. Hormones are most likely not the trigger for the seizures but we can slow down the onset of puberty if insurance will allow. Jessie’s case is being reviewed by “The Big Brains” at Cooks (Drs. Malik, Hernandez, Perry, and Donahue) as well as Drs. Carson (Hopkins) and Mathern (UCLA). Looks like surgery may be in her future again – hopefully we can hold off until later in the summer to give her more time between surgeries. This is all still speculation but we feel this is most likely the outcome.

Through it all though, our Warrior Girl, (thanks Pete – she is totally a Warrior), has lifted both arms in the air (she does this well with her left arm!) and is riding this coaster with abandon. Below is a little time line of the past few weeks. Happy 9th Birthday Jessie!

2/26/11 Special Girls Day Out! Celebrating Jessie’s Birthday a Little Early

We knew that Jessie wouldn’t get to party the weekend before her birthday, so we set up a fun day with one of her BFFs a little early. Jessie and her friend Emma had a great time at the spa getting a mani and pedi and lunch. Fun time in the hot tub, red velvet cake, and presents after – what a day!
A fun day but seizures wore her out – she went to bed at 4:00 pm!

2/27/11 Shoot’n Shotguns!

Santa brought each of the kids a .410 shotgun for Christmas but with all the craziness that ensues at our house, we hadn’t had a chance to shoot. The opportunity presented itself, so we jumped at the chance! We all had a great time, including Jessie. A nap to and from helped her get through the day.

3/8/11 Happy Birthday Jessie!

Dinner at Logan’s Road House and lot’s of Justin Bieber goodies.

Life Is Good

A Chance to Tell Your Story and Make a Difference

2011-02-18T10:38:00.001-06:00

Hi All,
Below is a letter from Dr. Gary Mathern, Pediatrice Neurosurgeon at UCLA . If you or someone you know has epilepsy, please read and participate. Thanks, Cris

To all,
I am writing to inform you of an opportunity that as a family with someone with epilepsy you might want to take advantage of.
The Institute of Medicine (IOM) based in Washington DC is a non-partisan NGO that performs studies at the request of Congress, NIH, and the Department of Health and Human Services (DHHS) related toward developing public policy for diseases. Over time these reports have had significant impact not only on health policy in the US but internationally because of their scholarly content and thoughtful consideration of patient needs. Very few IOM studies have been on neurological diseases.
The IOM has been charged by DHHS and NIH with looking at epilepsy in determining needs that might guide federal public health policy and funding in this field. Compared with other neurological diseases, epilepsy affection 1% of the population gets fewer federal resources compared with Stroke and Parkinson’s Disease. A strong report by the IOM would likely get attention to help people with epilepsy and is an exciting opportunity for us.
As part of the IOM’s work, there will be 3 open public meetings of the IOM epilepsy committee. The first already occurred in Washington DC in January top charge the committee, the second will be at the Beverly Hilton on March 21, 2011, and the final open meeting will be in DC at the end of June. Drafts of the report will be finished by late fall 2011 with a final product spring 2012. The open meetings include time for public testimony (limited to 3 minutes) and one of the major items (Panel 1) for the March meeting is the impact of epilepsy on patients, families, etc. I know of this work because I am the representative for a couple of the sponsoring organizations, such as the ILAE, Hemispherectomy Foundation, and RE Children’s project.
The IOM public meeting in March is an opportunity for your individual voices to be heard about epilepsy and access to care. The IOM committee has already expressed that the public stories they heard at the January meeting had great impact even if each story is fairly short. If you have a passionate voice and wish to participate, here is your chance. This will be the only west coast opportunity to publically talk to the IOM. To attend, you will need to register (go to www.IOM.edu/epilepsy) and if you want to speak you will need to send them an email (instructions on the site). If you cannot attend and still want to be heard, there is an email address on the IOM web site for you to send in your comments and stories that will be passed on to the committee. The committee is interested in knowing if getting access to epilepsy care was easy or not and the quality of care that you received.
Please, also send this note to any other families in Southern California you think might be interested.
Thank you for your time. If you have any questions, please let me know. If you decide to attend please let me know as well.

"Hope in One Hemisphere" Hits the Internet

2011-02-05T19:41:00.003-06:00

Our wonderful friends Jack Epsteen and Julie Dolson, in California, just released an amazing video that will soon be up on The Hemispherectomy Foundation website, but can be seen immediately on the Internet through vimeo at this link : Hope in One Hemisphere Video .

If you need an emotional refill, watch this video. If you want more insight into the life of a Hemi Family, watch this video. If you are in the Hemispherectomy Community and you don't want to feel alone, watch this video. Or if you just want a warm fuzzy feeling about kids who are more amazing than any you have met, click the link above and enjoy.

This video was filmed at the International Hemispherectomy Foundation Conference and Family Reunion in Indianapolis in 2010.

Enjoy! Cris

Happy New Year!

2011-01-02T14:33:00.006-06:00

The last 6 months of 2010 were quite a challenge for the Hall family. Jessie's hydrocephalus and increase in seizures really threw us for a loop. But now it's 2011 and time for new beginnings! Time to put all all that behind us and look forward to bright and promising opportunities!

Jessie has been doing very well since she came home just before Christmas. She still gets tired in the afternoon but is getting stronger every day! She is going to start school with everyone else, so she hasn't missed a beat.

Matt, Jake, and Josh are all "excited" about starting back to school as well. I think part of it is putting away all the video games - time to earn them back in 6 weeks with good grades!

Cris and I are rejuvenated. I think we needed the Christmas break just as much as Jessie did to rest and catch up on a lot of things that were neglected the last few months.

Happy New Year! Here's to new beginnings!

Jessie is Home !

2010-12-22T19:18:00.002-06:00

After a nice Christmas Concert at Cook Children's Medical Center with Randy Travis, Charlie Pride, and some other Country stars, Jessie was released and is now home.

Pictures below, including one with Jessie and Randy Travis.
http://www.star-telegram.com/2010/12/22/2723369/country-singers-entertain-patients.html

So, Jessie is beginning to feel much better and we feel blessed to have her home. On the down side, she has had 3 seizures since surgery. That really bites. It is too early to call the surgery unsuccessful. We'll give it a few months, and give her brain time to heal from the trauma of brain surgery, and then we will know for sure.

No need to speculate until then. One Day at a time and Thanks to God ! Thanks to you all for your prayers, emails, Facebookings, Texts, Calls, Gifts, Visits. We Love You.

Blessings to all for a Merry Christmas. Cris

Things are Looking Up!

2010-12-20T21:46:00.002-06:00

Hi All,

It looks like we have turned the corner on Jessies' Redo surgery. Tomorrow will be day 6, and she is turning the corner and beginning to feel pretty good again. She still has a few more days in the hospital, I'm certain, and the swelling is still pretty bad, but we are seeing smiles again.

For those of you who are not aware, 5 days ago, Jessie underwent a redo hemispherectomy surgery to battle returning seizures from her original Hemispherectomy in 2008 for Rasmussen's. Her original surgery was at Johns Hopkins by Dr. Ben Carson, and the Redo was performed at Cook Children's in Fort Worth, Texas by Dr. David Donahue.

Even though her original hemispherectomy was anatomical, there was some tissue and connections that were remaining and seizing. Dr. Donahue retraced a complete Corpus Collosotomy and disconnected some other tissue in the frontal lobe that was remaining.

I can't tell you if this surgery was successful yet, and really shouldn't try for months...and even then, it will be an optimistic guess. All of you know who have Hemi Kids know what I mean.

Jessie had a really rough time over the past few days, but is now starting to "turn the corner", and finally ate today and even held it down. She has been plagued with nausea, headaches, and lethargy since surgery, most likely from Chemical Meningitis. This is fairly common for these type of surgeries.

I continue to update regularly on Facebook.

Thanks for all of your support. I think that Jessie will be home for Christmas...hopefully seizure free for good.

Kind Regards,

Cris and Kristi Hall

To Learn More about Hemispherectomy, see http://www.HemiFoundation.org

Post Surgical Trials

2010-12-18T11:17:00.001-06:00

Quick Update on Jessie. I am mostly doing my updates on Facebook now, so if you are looking for more up-to-date status, please send a Friend Request to Cris Hall.

Jessie had 104.2 fever earlier. This sounds bad, but after brain surgery, this does not indicate a bacterial infection like it would in you or I. Basically, the spinal fluid has so much debris in it, the body goes into an immune response with fever. Hopefully over the next few days, this will get better.

She is still unable to hold food down, and is mostly lethargic, not drinking or eating.

She is out of PICU, and we are in a private room, which is nice. Kristi’s mom and dad are here now, and that made Jessie smile this morning. She has not had any more seizures, since the one immediately post surgery. Hopefully, that was just due to post-surgical irritation.

Thanks for all of your prayers.

Kind Blessings to all of you.

Cris and Kristi
http://www.HemiFoundation.org

Surgery Tomorrow

2010-12-15T11:26:00.001-06:00

Today, we will be at Cook Children’s Medical Center for Pre-Op, Registration, and all the other pre-operative stuff that you have to do. Jessie’s surgery will be Thursday (tomorrow). I will try to keep everyone updated, probably on Facebook, as that seems to be the most used media these days.

The increase in Tegretol has kept Jessie’s seizure to only a couple a day, and not very intense, so she has been able to continue in school this week. Her seizures look something like a combination of a complex partial, and simple partial seizure, beginning with a tummy ache, then staring, and some twitching in her right eye. They are mild, but they continue to break through the Tegretol dose. It is just a matter of time til we would be back in the ER like last week.

The saddest part, is that yet another year, she misses her class Christmas Party. This is pretty important to a 2nd grader, but she hasn’t complained one time. Kristi and I were looking at our vacation spent this year, and over ½ was spent for hospital time. Really, this has been a harder year for Jessie than her 1st complete year after surgery. We pray that this will be the last one.

So, Dr. Donahue will be going after some tissue and connections that are firing up on the SPECT Scan when Jessie is seizing. It is small amounts of tissue and two connections that need to be severed. Unfortunately, It is full-open, brain surgery just like her 2008 Hemispherectomy. Fortunately, recovery shouldn’t be as long as the first surgery. If all goes well, her stay at Cooks shouldn’t be over a week….God willing less.

On the bright side of things, if Jessie feels well, Christmas time at Cook Children’s is magical. They really spoil the kiddos there all the time, but Christmas is over the top.

Kristi and I once again ask for your prayers. It seems like every time we turn around, we are asking everyone to pray for Jessie. We are not too proud to keep asking, so please pray for Jessie and her doctors and for a quick recovery.

Blessings,

Cris and Kristi Hall

A Little Bit of Christmas Fun!

2010-12-09T22:01:00.005-06:00

12/09/2010

Amongst all the craziness that seizures bring to our life, Jessie and I were able to go with her Brownie troop to see the play Rudolph at Casa Manana last Saturday. Jessie and her troop dressed up to attend the play, take tickets, and pass out play bills. The girls (and their moms!) had a great time! I took this picture before we left for the play . . . Jessie looks so grown up! No one knew that we were hiding 29 staples from her scar revision and EEG glue with that cute hat!

Jessie's Surgery Date Set

2010-12-07T10:39:00.002-06:00

Surgery Date Set

It’s been almost 3 and ½ years since we traveled to Johns Hopkins for Jessie’s initial brain surgery. Any time a hemispherectomy is performed; there is a chance that seizures will return, although they are usually less frequent and less severe than before surgery. We have watched many families go through a second surgery, and have always hoped that this wouldn’t happen to Jessie.

But here we are…..

I have said this many times, and I continue to emphasize it. We are blessed. There are many families, who we have met, that have no options of treatment, no hope for a brighter future. As hard as it may be to believe, we are the lucky ones. We have options and we have hope that Jessie can lead a life free of seizures.

This is what this second surgery is all about. It is about giving her that chance. Watching what the seizures did to her last week in the hospital made it an easy decision. Starting to carry Diastat (Seizure Rescue Medication) again, and increasing her seizure medication just brought back all of the old memories, but this time the decision was easy. Brain surgery is not the only option. We could try increased doses of seizure medication, and that might work, or maybe not. Brain surgery might not even work, but if it does, she can be free of the seizures and medications of epilepsy.

There are no guarantees with brain surgery, and the risks are real and present. On the positive side, however, and if all goes well, her hospital stay shouldn’t be nearly as long as after her hemispherectomy. Also, she shouldn’t lose any function that she currently has, which means no in-patient rehab on the 6th Floor at Cooks.

So, Surgery is scheduled for Thursday, Dec. 16th at Cook Children’s Medical Center. Dr. David Donahue will be doing the surgery. We are confident that he can do the job, as he has considerable hemispherectomy experience. This means that we will not be traveling to Johns Hopkins for this surgery. Dr. Donahue has been taking care of Jessie with shunt surgery and revisions, and we are confident that he can do a fine job on this surgery.

Thanks to all of you for your prayers and gifts for Jessie. Please keep the prayers up. We respectfully ask that in place of gifts, you send a card or make a donation in Jessie’s honor to one of the following organizations.

The Hemispherectomy Foundation http://www.HemiFoundation.org

The RE Children’s Project http://www.rechildrens.org

Citizens United for Research in Epilepsy http://www.cureepilepsy.org

Blessings to All,
Cris

Seizures and What to do Next

2010-12-02T17:13:00.002-06:00

Jessie is having a much better day today. She is eating again, smiling, and active. She is a different kid than she was yesterday. She even did her homework today. Praise God and the doctors for watching over our girl !!

Her seizures today are much less severe and less frequent. Because they had to give her rescue medicine 2 days ago (Ativan) for a Status Seizure (one that won’t stop on its own), and other sedation for yesterday’s MRI, it appears that the cycle is broken, temporarily. This buys us some time and allows her to gain strength, eat, and rest from the seizures. Here primary epilepsy medication (Tegretol) has been increased, and will continue to increase to hold off the seizure activity.

Dr. Hernandez (epileptologist) came by today, and showed me her EEG. It was obvious that she was having seizures in the right hemisphere. He also showed me her MRI today. He showed me that there was some leftover tissue and two connections that were the suspect areas. The SPECT scans should verify this. We will know tomorrow.

The good news is that there is no seizure activity in the Left Hemisphere (her good side). This, of-course, would be devastating news for a child that only has the left half of her Cerebral Cortex.

So what are the next steps? Well, unfortunately, it looks like Jessie will have to undergo brain surgery to have this tissue removed and the connections clipped. Medication is usually very ineffective, in the long-term, for Rasmussen’s tissue, and Kristi and I don’t want to take a chance with the connections that are still there. The last thing that we need is seizure activity crossing over to the good Hemisphere. This follow-up surgery is not uncommon in the Hemispherectomy community…which is unfortunate. In the “Hemi Community” we call this surgery a “Redo”, which is bit of a misnomer.

The rehabilitation should be much easier this time, and her hospital stay should be much shorter than in 2008. As you all know, Jessie an extremely strong-willed child, and she is going to be fine, especially with all of you praying for her and God continuing with His glorious plan for her.

Thanks to everyone for your prayers, cards, gifts and visits. The prayers are the most important thing. We ask that if feel compelled to do something for Jessie over the next few weeks, please consider a donation to one of the following Public Charities in Jessie’s Name. You can donate online or by mail, just specify “Jessie Hall” in the comment field. All three below are IRS 501c3 organizations, which means you get a nice end-of-the-year deduction.

The Hemispherectomy Foundation : http://www.hemifoundation.org/
The RE Children’s Project : http://www.rechildrens.org/
Citizen’s United for Research in Epilepsy : http://www.cureepilepsy.org/

Blessings to All for your support over the past few days.

Cris

Seizures Have Returned

2010-11-30T18:58:00.000-06:00

Unfortunately, it looks like Jessie is having seizures again. She is currently in the EMU at Cook Children's in Fort Worth, and the epileptologists believe that she has some seizure activity coming from her hemispherectomy side, from a missed connection and brain tissue left behind in the first surgery. It is deep tissue, and hard to pick up on the scalp EEG.

There is some activity on that side, but thank God, there is no activity coming from her good left side. They did a SPECT Scan (like a PET only it looks at blood flow vs sugar uptake...idea being seizure tissue causes more blood flow to seizure area). The results from the SPECT are not in yet.

In addition, they will do a T3 detailed MRI tomorrow. At that point, they will make the decision on what to do.

Today, she required Ativan to stop a status seizure. She is not doing well, and is eating very little. They are slowly increasing her tegretol, however, we have told the epileptologist and surgeon that if they can pinpoint the tissue and connection, that we want it out and NOW! AEDs and other meds have very little long-term effect on Rasmussen's Encephalitis inflamed tissue.

We continue to trust in God and His Plan, and ask for your prayers for Jessie. We believe in the power of prayer and good medical treatment.

Blessings to All,
Cris

The Hemi Lighted Forest of Hope!

2010-11-07T22:12:00.005-06:00

Christmas Time is coming early this year, so if work and life is getting you down and you need a good shot of "Feel Good". Check out this story, and especially the link to the images and audio. You'll be glad that you did. This is Kristi's Mom and Dad who did all of this and we hope to see it in the national spotlight soon. Enjoy and Blessings!! Cris

The Hemi Lighted Forest of Hope is a celebration of LIFE and HOPE for children all over the world, who have had their lives turned upside down, in a battle against intractable epilepsy. These children all underwent radical brain surgery in HOPE of living a life seizure free. A tree will be lighted for each child who has undergone Hemispherectomy Brain Surgery and who has registered with The Hemispherectomy Foundation. These ...trees and lights represent a celebration of each child’s HOPE for a life without epilepsy.

This year, 421 trees will be lit and each year more trees and lights will be added to the Hemi Lighted Forest of Hope.

The Lighted Forest Facts :

65,000 lights or 3.47 Miles of continuous lighting

4.5 Acres of Trees

2,000 Feet of underground wiring

450 Extension Cords

440 String of Multicolored LED Christmas Lights

Amazing Vido and Story Here. This is REALLY Cool !

Images and Audio - http://blogs.wyomingnews.com/blogs/shutterspeed/

Story - http://www.wyomingnews.com/articles/2010/11/07/news/01top_11-07-10.txt

To find out more about The Hemispherectomy Foundation, go to http://www.HemiFoundation.org/

Google htpp://www.google.com

In for Follow-Up MRI one Day, Brain Surgery the Next

2010-10-30T18:04:00.002-05:00

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.

Cris

Straight "A"s

2010-10-13T19:32:00.003-05:00

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
http://hemifoundation.intuitwebsites.com/XmasCards2010/2010Christmascards.html

Blessings,

Cris

The RE Children's Project : Finding a Cure for Rasmussen's Encephalitis

2010-10-10T22:08:00.003-05:00

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 :
http://rechildrens.com/blog/

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!

Cris

Hydrocephalus Symptoms - Not by the Book

2010-09-01T09:14:00.001-05:00

Hi All,

I just wanted to report that Jessie is doing so much better since her shunt
placement, and her neurologist is beginning to reduce Tegretol again, since it
turned out to not be seizures (even though it looked like seizures).

So, I have made a note of her pre-shunt symptoms, and noted which ones are
influenced by the shunt...or at least the best we can tell. This is not
science, but one parent to another to say "this is what we've observed". I hope
that it is useful in some way.

1.) rocking - Much Better, less rocking, even when she is excited.
2.) nervous hands - no noticealbe change
3.) hand strumming - completely gone (Many of you saw this at the Hemi Family
Retreat. She doesn't do it at all any more)
4.) tummy episodes -reduced significantly
5.) vomiting - reduced significantly
6.) biting clothes - gone
7.) hurts when we rub her neck - I don't think this is related
8.) left bug eye - gone
9.) behavior - Ideal Behavior
10.) ventricle size - Waiting for yesterday's MRI
11.) nose wiping - Gone
12.) lip picking - Still does it
13,) lip / finger preseverating - Less, but not gone
14.) general nervousness - Better
15.) bad short term memory - Better (She recently memorized a 14 line, 4 verse
poem called "I am Responsible for Me".
16.) loses focus - Better
17.) Startled Easily - Gone

So, what looked exactly like seizures a couple of months ago turned out to be
hydrocephalus. Or maybe the pressure was actually causing small seizures as
the brain was compressed. But the bottom line is that things are getting
better.

Thanks for all of your support and encouragement.

Cris
Jessie's Dad (R Hemi in 2008 for RE, L VP Shunt in 2010)
"Hope in One Hemisphere!"

Back Home and Jessie is Doing MUCH Better

2010-08-12T19:52:00.002-05:00

Right Now, Jessie is in the living room and I am typing at my desk. The reason that I know that she is feeling much better is because she is giggling like a little girl as she watches iCarley. Well, and also that and she can sit up without getting a headache or barfing...

If you would have asked me 1 month ago what was going on, I would have told you 100% seizures, but the MRI told a different story. It just goes to show you that what you see on the outside, in terms of clinical symptoms, aren't always what you think. The brain is a very complex organ...even a half of a brain.

Hopefully as Jessie adjusts to the new "Normal" pressure, the old symptoms will be a thing of the past.

For those of you looking for Details about the shunt, it was a low pressure shunt and it was placed on the good side of her brain. Not sure of all the logic behind this, but it was what Dr. Carson suggested to Dr. Donahue. There can be many arguments made to put the shunt on the Hemi Side as well as the normal side of the brain. Who knows what might be the best method, best type of shunt, etc....

Thanks again for all of your support, prayers, and thoughts.

God Bless,

Cris

Back at Cook Children's

2010-08-09T21:55:00.004-05:00

Unfortunately, Jessie is back in the hospital. We took her into the ER on Sunday after she began to dehydrate. She has been unable to keep much liquid down since surgery on Thursday. Her last meal was on Wednesday. The poor kid has been without food for almost a week. She has kept small amounts of liquid down, but not nearly enough, so she is on IV fluids.

Dr. Donahue says that it is her body getting used to the lack of pressure on the brain. It is possible that this is the case, and we hope for a better day tomorrow. It is also possible that the new shunt is overdoing it's job and draining too much CSF (cerebral spinal fluid).

I wish that I had more information and better news.

Thanks to everyone for the prayers, cards, and gifts for Jessie.

Jessie has all that she needs. I ask that if you feel like you want to do something, please don't send gifts. Instead, please donate to one of the following organizations:

The Hemispherectomy Foundation : http://www.HemiFoundation.org
(Dedicated to children and families who have endured Hemispherectomy Brain Surgery)
or

The RE Children's Project : http://www.rechildrens.org
(Dedicated to finding a cure for Rasmussen's Encephalitis )

God Bless,

Cris

Jessie is Home from the Hospital

2010-08-07T10:49:00.003-05:00

Jessie is home from the hospital after a successfuly shunt placement for hydrochephalus. While we had no choice but to have the shunt placed to relieve pressure on her brain, there is now a whole new set of things that we have to watch for.

Right now, she is having a very difficult time keeping down food and liquids. We have to take it very slow, and she mostly has to lay on her back. When she sits up, she will get sick and throw-up everything that we've spent the past hour trying to get her to hold down.

If she doesn't start holding things down better by Monday, we may have to put her back in the hospital. I'm really surprised that they sent her home so quickly, but they did.

Right now, our biggest concern is that the shunt is overdraining and she actually doesn't have enough spinal fluid and pressure.

Thanks for all of your continued prayers.

Cris

Brain Surgery #2

2010-08-03T20:13:00.002-05:00

Jessie has been going down-hill lately, as the hydrocephalus continues to get worse. Last week, it seemed like tegretol was calming things down, but now, her episodes are getting more frequent again, even with an increase of Tegretol.

Dr. Carson (Hopkins), Dr. Mathern (UCLA), and Dr. Donahue (Cook Children's) all agreed that we need to go ahead and move forward with surgery to place a Shunt in Jessie's Brain to relieve the increased pressure and build-up of spinal fluid. Surgery is scheduled for Thursday, Aug. 5th at Cook Children's Hospital. Dr. Donahue will be performing the surgery.

Here are a few links if you are interested:

http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm

http://www.umm.edu/ency/article/003019.htm

This video is kinda graphic, but very cool. http://www.youtube.com/watch?v=0h7Xa-Lsnac

Most literature outlines several symptoms of hydrocephalus, which quite frankly, we haven't seen. These are usually things like headache, dizziness, sleepiness, and vomiting. She has really only exhibited some vomiting. She has had none of the other symptoms. We believe that her pressure has built very slowly over the past two years, and therefore, she has been able to deal with it pretty well.

I've outlined the things that we have seen over the past two years, which may be attributed to building hydrocephalus. This doesn't mean that just because your child exhibits these that they may have hydrocephalus, but it may be worth exploring with your child's neurologist.

1.) rocking
2.) nervous hands
3.) hand strumming
4.) tummy episodes
5.) vomiting
6.) biting clothes
7.) hurts when we rub her neck
8.) left bug eye
9.) behavior
10.) ventricle size (obvious on MRI or CT )
11.) nose wiping
12.) lip picking
13,) lip / finger preseverating
14.) general nervousness
15.) bad short term memory
16.) loses focus

Currently, we do not believe that Jessie's symptoms are seizures. That is our prayer. We also pray that the surgeons and staff at Cook's Children's Hospital do the very best that they can to get us through this bump in the road. We pray for no infections, no complication, no over-draining, and a quick recovery.

God Bless,

Cris

Good News!! Hydrocephalus?!?!?

2010-07-22T21:49:00.003-05:00

Hydrocephalus is basically the build-up of cerebral spinal fluid (CSF) pressure in the brain. If you are interested in reading more, here is a link in Wikipedia, but it is very frightening stuff, most of which doesn't apply to Jessie. http://en.wikipedia.org/wiki/Hydrocephalus

So what does that have to do with Jessie? Well, the neurologist (epileptologist)/neurosurgeon at Cook Children's Hospital now believe that Jessie has Hydrocephalus. Evidently, the MRI that was taken yesterday (Wednesday) was very telling. Also, Dr. Perry (Epileptologist) was nice enough to call us immediately after he read the MRI, and let us know his finding.

What he said, was that their diagnosis of seizures was only from the clinical presentation of episodes that looked very much like seizures, and that the EEG didn't show seizure activity after a close look. The MRI, on the other hand showed signs of Hydrocephalus that could explain all of her symptoms. The main thing that they noted was that the ventricles were significantly large than they were a year and a half ago. Indicating increased fluid and pressure.

So why is tegretol slowing down the episodes? We'll evidently, the soothing effect of Epilepsy medicines can do that when the brain is irritated from the pressure. The interesting thing is that Jessie has had the tummy episodes since immediately post surgery, so she has probably been dealing with this mild hydrocephalus for a couple of years. There is really no way to know for sure.

What do we do next? Well, Dr. Hunnicut said that he needs to put a shunt in. A shunt is like a tiny tube in Jessie's brain that helps regulate the pressure. Many hemi children have one, but we hoped that Jessie would not, because they can malfunction and need adjustments, etc... Without it, however, hydrocephalus can cause brain damage.

So, now we have an opinion from Cooks in Fort Worth. Next stop Johns Hopkins and UCLA. Luckily we don't have to actually go there. We are having all of Jessie's tests sent to Johns Hopkins and UCLA. The Doctors at Hopkins (Mathern/Sankar) and the Doctors at Hopkins (Carson / Vining) will look over the data and come up with their opinion. If they all agree with Hydrocephalus, then will will schedule surgery sometime in August for a shunt.

Shunt surgery is a short brain surgery and not nearly as invasive as a Hemi Redo. You can read about them online if you are interested. We plan to stay at Cooks for the shunt surgery if needed.

So if the hospitals don't agree??? We'll cross that road if we have to.

The take away from this confusing blog post is Good News. Things could have been much worse had Jessie needed a Redo Hemi Surgery to get missed tissue and connections. And things would have been really bad had she had seizures originating from the good sign of her brain, or God forbid, Bilateral Rasmussen's Encephalitis.

Hydrocephalus?? Who would have thought it?

Thanks to everyone for reading and keeping up with Jessie. I want to let you know that she is in GREAT spirits and still has that great smile on her face all the time.

Cris
Jessie's Dad

Complex Partial and Simple Partial Seizures Confirmed on EEG

2010-07-17T22:04:00.002-05:00

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

2010-07-15T22:34:00.002-05:00

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

2010-05-08T17:37:00.008-05:00

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.

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

2010-05-01T21:05:00.003-05:00

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

2010-04-14T21:46:00.002-05:00

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.

Rasmussen's Encephalitis

2010-04-09T09:40:00.003-05:00

Rasmussen's Encephalitis - The Search for a Cure

A good friend, and fellow Rasmussen's Dad is well underway in a concentrated effort to find a cure for Rasmussen's Encephalitis. Seth Wohlberg, whose daughter Grace had a hemispherectomy last year has created the RE Children's Project. Please check it out, and support this fine organization.

The RE Children's Project was founded in 2010 to increase awareness regarding Rasmussen's Encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure. The organization also supports research dedicated toward the recovery process following hemisphrectomy surgery, a life altering surgery that is the only known "cure" for the disease.

http://www.rechildrens.org

Hemi Foundation : Music Benefit - Baltimore - Feb 28th at 3:00PM

2010-02-24T19:39:00.002-06:00

The Hemi Foundation Dreams on Wings Music Tour

The Hemi Foundation is proud to present this Sunday (2/28) at 3:00PM in Baltimore, Maryland the Dreams on Wings Music Tour. The foundation's Northeast Regional Director has put together an exciting musical event with outstanding musicians for your entertainment. It will be a family-friendly event, so come on out!!

The Dreams on Wings Music Tour will be held on this Sunday, February 28th at 3:00PM at Bourbon Street near downtown Baltimore.

The performing bands will be Starcrush, Broadcast, and Quikfire and the event will be emceed by Tyler Daniel from 103.7 FM.

Some special give-aways include AirTran Airline Tickets, Baltimore Orioles Autographed Ball and Glove, and much more!!

So if you live in the Washington D.C. / Baltimore / Philly area or anywhere within driving distance, come out and listen to some good music and support the Hemi Foundation. Kristi and I are flying in from Texas on Saturday and will be there.

You can buy tickets at the door, or on The Hemi Foundation website at http://www.hemifoundation.org .

Hope to see you there!!

Cris

2009-12-24T18:01:00.002-06:00

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

2009-12-08T22:30:00.006-06:00

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

2009-11-26T19:39:00.002-06:00

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

2009-10-18T19:53:00.003-05:00

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

2009-09-28T21:43:00.002-05:00

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

2009-09-28T21:29:00.004-05:00

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

Walk Aid - Lose the AFO

2009-09-01T20:13:00.005-05:00

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

2009-09-01T19:31:00.003-05:00

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

2009-08-27T21:26:00.004-05:00

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

2009-08-18T20:40:00.005-05:00

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!

2009-07-14T22:16:00.004-05:00

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

2009-07-14T22:16:00.001-05:00

Anes' Story - The Little Boy from Bosnia

2009-06-26T21:47:00.003-05:00

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!!

2009-06-11T18:01:00.002-05:00

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

2009-05-25T12:02:00.003-05:00

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

2009-05-25T09:24:00.002-05:00

Summer is for Swimming

2009-05-25T09:13:00.003-05:00

INAUGRAL DREAMS ON WINGS 5K TAKES FLIGHT

2009-05-23T10:24:00.006-05:00

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 !!!!

2009-05-01T16:09:00.002-05:00

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)

2009-04-27T09:35:00.001-05:00

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!!!

2009-04-12T19:46:00.002-05:00

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

2009-04-05T22:11:00.004-05:00

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!!

2009-04-05T21:26:00.003-05:00

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!

2009-04-05T20:58:00.005-05:00

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

2009-04-01T18:11:00.003-05:00

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.

Goodbye Keppra, It's Time to Go !

2009-03-13T18:25:00.002-05:00

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

2009-03-09T13:05:00.003-05:00

Swimming on March 6th !!??!!

2009-03-06T17:01:00.004-06:00

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

2009-03-06T16:36:00.004-06:00

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!

Pray for Chloe'

2009-02-26T20:34:00.003-06:00

Please lift up Chloe and her parents Cari, John Tom, and Justin and the rest of her family in your prayers, especially today, as her hemispherectomy surgery is finished today, and now she and her parents start the long road to recovery.

Pray for a quick and miraculous recovery and rehabilitation with no complications or setbacks.

An interesting note. I received a note from my aunt today, in Abilene. She told me that she was praying for the people on her church prayer list, and there was a little girl on the list named Chloe' who was having brain surgery today. She talked to some people around the church and found out that we were up at the hospital today. What a small world we live in.

There have been many prayer requests lately. Please keep those prayers going for these children. They all have a hard, demanding recovery ahead.

God Bless,

Cris

A Prayer for Jailynn

2009-02-25T12:22:00.002-06:00

Please lift up Jailynn LeFevers up in prayer as she had another post-hemispherectomy seizure. She was supposed to go home today, but now is back in the hospital.

Please say a prayer for her mom and dad, Holly and Jason, and grandma Gloria, and their entire family. We pray that these are simply, trauma seizures and will go away.

This is a young family that we care about so much, so please take just a bit of time to say a prayer for Jailynn and her family.

God Bless,

Cris

Prayers for Aiden

2009-02-21T20:50:00.003-06:00

There is a little boy out in California, named Aiden, who is just a wonderful kid, and who has wonderful and amazing parents. Aiden had a hemispherectomy last year, and is evidently experiencing frustration and/or pain that is making him want to hit his head. This little guy has been through so much, and deserves some peace, as do his parents.

Rachel, his Mom is also The Hemispherectomy Foundation Specialty Director over Sturge-Weber Syndrome, and she is our Web Master. She is an amazing person and an amazing mom.

Please say a prayer for Aiden, and Rachel. They need some peace and resolution and they need it quick. So please take just a few minutes when you read this, and stop and say a prayer for them. Especially that they figure out was is going on with Aiden, and that they find peace from it.
Aiden's Blog is at http://aidengregory.blogspot.com/ .

God Bless,

Cris

Prayer Request for Grace

2009-02-19T08:09:00.003-06:00

http://www.hemifoundation.org

It has been a while since I have blogged for a prayer request. We've been so caught up in Jessie's rehab and all the great things that she is doing, that I haven't really thought about much else.

Well, today, as I'm typing this, there is a girl named Grace who is undergoing a hemispherectomy at Johns Hopkins Children's Center for Rasmussen's Encephalitis. The situation is very similar to Jessie's, only Grace is 11 years old. I can't imagine how difficult this is for her and her parents, as she understands everything about the surgery and what limitations she will have after the surgery.

Although she is a very brave girl, and her parents are AMAZING people, please take just a few seconds today and say a prayer for Grace. With a name like that, how can you not pause for a minute for a short prayer. Without grace, where would any of us be?

Please pray for a smooth surgery and for her surgeon, Dr. Jallo. Please pray for all of the medical staff at Hopkins today that will be taking care of her. Please pray for her Mom, Debbie, her Dad, Seth. Also for her big brother, and all of her extended family and friends. They are all very worried right now....beyond anything that you can imagine.

If you are interested in keeping up with Grace, you can find her blog here... http://gracewohlberg.blogspot.com/ .

God Bless,

Cris

http://www.hemifoundation.org

Wii be doin' therapy and Wii don't know it !!

2009-02-13T18:37:00.003-06:00

http://www.hemifoundation.org

Jessie / Dr. Carson / Cuba Gooding Jr. ?

2009-02-03T14:46:00.003-06:00

http://www.hemifoundation.org/

I just watched a clip from Baltimore about the Upcoming movie "Gifted Hands", the story of Dr. Ben Carson (Jessie's Brain Surgeon). Cuba Gooding Jr. is playing Dr. Carson.

Anyway, this news clip shows Dr. Carson, Cuba Gooding Jr, and Jessie. She's hangin out with some high profile folks these days. Dr. Carson also agreed to be The Hemispherectomy Foundation Honorary Chair of the Medical Advisory Board.

Here's the Link.
http://wjz.com/morningedition/carson.screening.2.925270.html . You may have to click on the Dr. Carson story.

Also, Jessie will be on the Channel 21 News at 7:00 tonight to talk about some of these things. Well, she will want to talk about her "Texas" 1st Grade Program probably.

Blessings,

Cris

Jessie and Alex on the Trampoline

2009-01-23T21:23:00.003-06:00

Jessie's friend Alex is over for a sleep-over tonight, and they had a little water fun on the trampoline. Only in Texas can you play in the water in January.

Thanks Again Midwest Airlines!

2009-01-23T21:01:00.002-06:00

Another Big THANK YOU goes out to Midwest Airlines for flying us up to Baltimore for Jessie's 6-Month post-op check-up!

Thank You so much BJ (Dreifke) and all the friendly people at Midwest. BJ, I know that you are reading this, so Thank You from the bottom of our hearts for taking care of our family. Midwest is the indeed the BEST !!! The hot chocolate chip cookies aren't so bad either.

For those of you who have never flown Midwest, give them a try the next time that you fly. It is a pampered experience and unlike any other airline in business today.

Thanks Again Midwest!!!

With Much Appreciation,

The Hall Family. (Cris, Kristi, Matt, Jake, Josh, Jessie)

Jessie is doing GREAT says Dr. Carson

2009-01-21T18:55:00.002-06:00

Jessie Update
Jessie is doing well. We just got back from Baltimore where thedoctors gave her an A+ for her 6 month post-op checkups.

Her neurologist (Dr. Vining) told us to do one more EEG, and if itlooks good, she could taper off of Keppra, and be down to one AED(Tegretol, 100mg x 3 times daily). I love the idea of being down toone AED, but scared all at the same time.

They were very pleased with her arm and leg mobility, but we arecautious as we know things will tighten up as she moves forward.

In Baltimore, we took care of a lot of business. We met with thefoundation's OT and PT from Kennedy Krieger Rehab. We met with outNE Regional Director (Jane Stefanik)and our Specialty Director -Rasmussen's (Lynn Miller). We talked 2009 Conference and Reunion withthem and what we would like to do.We also had the priveledge of meeting with the LeFevers family who'sdaughter will be having surgery very soon.

It was an amazing trip, and the capstone was when Dr. Carson agreedto be The Honorary Chair of our Medical Advisory Board. This is the life story of Dr. Benjamin Solomon Carson, the Brain Surgeon that performed Jessie Hall’s hemispherectomy brain surgery. He is Christian and an extremely talented surgeon. Please pass this on to anyone you know who might be interested in it.
Gifted Hands: The Ben Carson Story
Airdate:Saturday, February 7 @ 8:00PM (ET) (7:00PM Central)
TNT Channel
http://www.tnt.tv/movies/movietitle/?oid=44644
He is also the Honorary Chair of The Hemispherectomy Foundation Medical Advisory Board.
http://www.hemifoundation.org

Blessings,

Cris and Kristi

Benjamin Carson Becomes The Hemispherectomy Foundation's Honorary Chair of the Medical Advisory Board!

2009-01-16T10:36:00.002-06:00

It gives me great pleasure to announce the Honorary Chair of The Hemispherectomy Foundation Medical Advisory Board. Benjamin Solomon Carson, Sr. !

I've included a brief description and bio of this amazing man below. Also be sure to watch his life's story on TNT.

Set your DVR's! Gifted Hands: The Ben Carson Story will be shown on Sat. Feb. 7 on TNT
http://www.tnt.tv/movies/movietitle/?oid=44644

Benjamin Solomon Carson, Sr. had a childhood dream of becoming a physician. Growing up in a single parent home with dire poverty, horrible grades, a horrible temper, and low self-esteem, appeared to preclude the realization of that dream. But today he is the Director of Pediatric Neurosurgery at the Johns Hopkins Children’s Center, a position he has held since 1984 when he was 33 years old. He is a professor of neurosurgery, oncology, plastic surgery, and pediatrics.
In 1987, he gained world-wide recognition as the principal surgeon in the 22-hour separation of the Binder siamese twins from Germany. This was the first time occipital craniopagus twins had been separated with both surviving. The procedure employed hypothermic arrest, the deliberate lowering of body temperature, and circulatory arrest, and sophisticated surgical reconstructive techniques for success. In 1997, Dr. Carson was the primary surgeon in the team of South African and Zambian surgeons that separated type-2 vertical craniopagus twins (joined at the top of the head) in a 28-hour operation. It represents the first time such complexly joined siamese twins have been separated with both remaining neurologically normal. In 2008, Dr. Carson received the Presidential Medal of Freedom from President George W. Bush. The announcement came while he performed a hemispherectomy on Jessie Hall.
He is noted for his use of cerebral hemispherectomy to control intractable seizures as well as for his work in craniofacial reconstructive surgery, achondroplasia (human dwarfism), and pediatric neuro-oncology (brain tumors).
Dr. Carson is a recipient of numerous honors and awards including more than 30 honorary doctorate degrees. He is a member of the American Academy of Achievement, the Horatio Alger Society of Distinguished Americans, the Alpha Omega Alpha Honor Medical Society, and many other prestigious organizations. He was named by the Library of Congress as one of 89 Living Legends on the occasion of it’s 200th anniversary and in 2001, was chosen by CNN and Time Magazine as one of America’s top 20 physicians and scientists. He sits on many boards including the Board of Directors of Kellogg Company, Costco Wholesale Corporation, the American Academy of Achievement, and is an Emeritus Fellow of the Yale Corporation, the governing body of Yale University. In addition to his academic responsibilities, he is a highly sought after motivational speaker having spoken in venues as varied as high school graduations to the keynote address at the 1997 President’s National Prayer Breakfast.
He is the president and co-founder of the Carson Scholars Fund which recognizes young people of all backgrounds for exceptional academic and humanitarian accomplishments. He hopes this program will positively change the perception of high academic achievers among their peers across our nation. He is also the president and co-founder of the Benevolent Endowment Network (BEN) Fund, a recently established organization which will provide grants to assist families with non-covered medical care expenses of pediatric neurosurgery patients with complex medical conditions.
His numerous books, including, “Gifted Hands” , and “Think Big”, provide inspiration and insight for leading a successful life. He believes strongly in God and in America and believes that we all can play a positive role in creating a better world.

Back to Johns Hopkins !!!

2009-01-13T22:02:00.003-06:00

http://www.hemifoundation.org/

Well, we're going back to Johns Hopkins, but this time...it's a time for celebration !!!! Jessie had hemispherectomy brain surgery over 7 months ago, and has been seizure free ever since. She's had a long hard battle, but never given up and is doing AMAZING things for a little girl that couldn't even hold her head up 7 months ago.

So our Hopkins / KKI visit is for nothing more than check-ups. (and a brief walk on the split-belt treadmill ) We're going to see some old friends and celebrate our trip!

For those of you that haven't been out to the Hemispherectomy Foundation website in a while, please take a look, and tell everyone you know it make a donation to help these kids and their families out. http://www.hemifoundaition.org/ . Send a kid to camp, or add to the research or scholarship fund. Donate some toys or stamps...anyway that you can help.

I thought that I would post a few pictures from 7 months ago, just as a reminder to all that love her to show how far she has come.

God Bless! Cris

Fully Funded Medicaid Waivers

2009-01-10T19:32:00.002-06:00

http://www.hemifoundation.org

Hello Everyone!

If you haven't voted for the 'Fully Fund Medicaid Waivers for the Developmentally Disabled', please do so.

The website is http://www.change.org/ideas/view/fully_fund_medicaid_waivers_for_the_developmentally_disabled.

The votes are now over 3000, but we still need more help. All of the info is on that website as well to read about.

This will help out many children in the future that have gone through what Jessie did, and many other childhood diseases. Thank you!!!

A few Christmas Pictures

2009-01-02T19:46:00.004-06:00

We had a wonderful Christmas with my parents, and all of Kristi's familiy in for the joyous celebration of the Birth of our Savior.

We felt so blessed and so caught up in the moment that, quite frankly, we didn't take a lot of pictures...we just forgot. The video camera didn't even come out of its case. Here are few shots.

The Hemispherectomy Foundation Christmas Party

2009-01-02T19:12:00.008-06:00

http://www.hemifoundation.org

After 6 months of hard work, creating a foundation, dedicated to children and families all over the world, it was time to finally celebrate. With our 501 (c) 3 status approved by the IRS, we had a really big reason to get together and PARTY !!!!!

Caren and John Jennings, our co-founders, and good friends. We couldn't have done it without their hard work and dedication. (notice the new Hemi Foundation lapel pins)

Kristi and me.

Jessie, the little one that inspired us all !!!

Jessie and Avery. (Jessie had a sleep-over at Avery's house on New Year's Eve)

Lindy and Jessie. Lindy runs the Accounting department for the foundation ! She IS the accounting department !

Caren and Traci. Traci is the foundation "Ask the Teacher", and also Jessie's tutor.

Here's two sweet little angels ..... Catherine and Meredith .

Mr and Mrs. Jay Stringer. Who have so generously donated to the foundation since the very begining with printing services and support.

Our talented Jen Steward.

Marina and her mom.
Some funny looking guy in a beard who thinks that he is Ean Anderson (Jethro Tull).

Jake playing Christmas music for the talent show.

Riley jammin' on his axe!

Matt playing a Christmas song.

Our new lapel pin! On sale now at http://www.hemifoundation.org . All proceeds benefit the Hemispherectomy Foundation.

It was a fun time for all. 2009 is going to bring amazing things to all the children and families who need support from The Hemispherectomy Foundation.

God Bless all of you! Cris

Parker County Physical Therapy and Texas Tech's Matt Williams Surprises Jessie

2009-01-02T18:07:00.004-06:00

http://www.hemifoundation.org

Luke Haynes at Parker County Physical Therapy had a special surprise for Jessie at her last therapy session of the year. It was none other than Matt Williams (aka "LynnWood"). The star Texas Tech kicker who won his spot on the team after Coach Leach spotted his talents during a half-time kicking contest.

Weatherford native, Matt is a super nice Christian fellow who was kind enough to drop by to deliver a signed football for Jessie. During the interview with channel 8, Matt explained that his success was owed to God, and he was glad to come by and make Jessie's day special.

The ball was signed by many of Matt's Red Raider Teammates, and it was such a special gift.

We will remember 2008 for a lot of reasons, but this is one more to add to the list. We are so honored. Maybe Tech will offer Jessie a Scholarship in 12 years. :-) You know, kindof a "4 for the price of 3" deal.

I just finished watching the Cotton Bowl, and Tech lost...I'm a little sad. However, as far as I'm concerned, this football team has the most character of any team in the NCAA, ....EVER! I wish that there was a team award for character!! Tech would win it hands down.

Here's a little video of Jessie and Matt hamming it up for the cameras.

Thanks to Luke Haynes, Parker County Physical Therapy, Matt Williams, and Texas Tech for making this a year to remember.

Have a blessed 2009! Cris

Skate Queen - Jessie's back on the Rink!!

2008-12-13T21:38:00.002-06:00

http://www.hemifoundation.org/

Do you remember roller skating parties and the old roller rinks where the songs were older than Elvis and they still had the same "Limbo" stick from the 50's? Do you remember doing the "Hokey Pokey" and the old guy who gave you your skates? Well, that is Skate Queen, or whatever it was called in your town.

Jessie was back at Skate Queen for the first time since her surgery. She actually had her 6th Birthday party there before she left for Johns Hopkins for video EEG and final testing before surgery. Here is that blog entry http://jessiekelley.blogspot.com/2008/03/pictures-from-jessies-birthday-party-at.html . In these March pictures, she still had her steroid weight, and was twitching very badly in her face, arm, and hand...but she made the most of her 6th Birthday. We cried a lot that night. You'll see a big difference in the following pictures.

Tonight, the tears were those of Joy! Because she did it! She skated (actually roller bladed)! We had to hold on to her hand, and she was very cautious, but SHE DID IT!!! It actually looked like good therapy too, because she was really working that left (weak) leg. We plan on going back. We were so worried, and we were so afraid that she would hurt herself, but Jessie was so proud of herself, and we were so proud of her. She even did the "Limbo" with a little help. It was such a normal thing for her. Normal is good.

Here are some pictures and video. Jessie, "You go Girl !!"

You put your left leg in, You put your left leg out. You put your left leg in and you shake it all about! Anybody catch that? LEFT LEG!!

You do the Hokey Pokey and your turn yourself around!

That's what it's all about! Clap! Clap!

Girls Just Wanna Have Fu-un! Oh-a Girls Just Wanna Have Fun!

Jessie is sleeping like a log right now. I trust dreaming about playing with her friends and how much fun birthday parties are at Skate Queen! She told us tonight that she wants her 7th birthday at Skate Queen! So old man behind the counter, get out that 50's "Limbo" stick and polish up the disco ball, cause Jessie will be back.

God Bless, Cris

Christmas in the Mail !

2008-12-13T00:23:00.001-06:00

Leave it to Kristi's college roommate to take care of Christmas this year. Maura and Mike Flint are dear friends of ours and have been for 20+years. We've shared laughter and tears, dogs and apartments. We've watched each other have kids and we've traveled over seas to visit each other.

Maura and Mike took care of some of the middle-of-the-night prayer vigil for Jessie this summer while she was at Johns Hopkins in Baltimore, MD. They were living in England at the time, but are now back state side. They've always been there for us, and now they've helped us find some Christmas.

Thanks guys for the beautiful Nativity scene. It is exactly what I was looking for the other day, but couldn't find. It is an awesome reminder for us to reflect upon the birth of Jesus, our Lord and Savior.

Emmanuel - God with us!

I heard a really funny story from another good friend (whom we've only met once, that's a blog entry of it's own..check somewhere around June 22nd, 2008 blog). Anyway, she said that her youngest finally stopped calling the infant in this scene, "the baby cheeze its". That cracks me up. Kids are great.

Thanks again Mike and Maura! We love you guys! God Bless You and Merry Christmas!

Cris and Kristi

Avast ye scallywags!!!

2008-12-12T23:48:00.002-06:00

On Thursday night, Stuard Elementary, in Aledo, Texas was transformed into a den of scurvy dogs as the 4th graders presented "A Pirate Musical", directed by Mrs. Mason.

Here is Matt and Nickie up on the bridge, navigating to some far off land to plunder and pillage! I hope the nearsided pirate can see land ho from the crows nest!

Here is Peg-Leg Zach, Captain NoBeard Matt, and 1st Mate Cassie.

Yo Ho! Yo Ho, me hearties! Yo Ho! Ross, Cameron, Ray, and Matt!

Now they don't look so mean do they. Just a few days ago, I saw them doing their math homework like good little pirates.

Outstanding Job Mrs. Mason and all the 4th graders. This was truly a night to remember and a production fit for a sea king. A Pirates Live for me!

Captain "No Beard" himself. He was one very proud boy after his performance. His Grandma, Grammie, and Grandad were proud too. Mom and Dad were pretty pleased too.

Way to go Matt!

Where's Christmas?

2008-12-05T22:24:00.001-06:00

This evening, I found myself wandering aimlessly in Walmart. I had dropped the boys off at Jump Extreme for Josh and Jake's birthday, and Jessie was at a birthday party as well, with Kristi. I was by MYSELF....imagine that!!! So I decided that I was going to do some Christmas shopping. What an opportunity knocking, and the doors literally opened for me. (they were electric with an infared sensor. ;-) )

So, after doing some shopping in the sporting goods for the kids, I decided that we needed a little nativity scene for the house, so I headed to the Christmas section. Seek and I shall find, was my state of mind, afterall the doors were opened for me. So, I went down each of about 8 isles near the garden section, and couldn't find anything. Oh, there were plenty of Santa Clauses and reindeer, and even some stockings with John Deere and Dale Ernhert Jr. on them, but not a single nativity scene.

I was sad. This is the first year that I really realized that we're losing Christmas. People have been saying it for years, but I never really understood it until this year. We're losing the meaning of it ALL. It's not about the birth of our savior anymore. It's about lights and ribbons and candy canes and trees and a million other things that aren't Christ.

Now don't get me wrong. I'm not an old fuddy duddy that doesn't have fun with Saint Nick and Rudolph and Rockin' Around the Christmas Tree. I love that part of Christmas too. I really do! But for God's Sake, literally, let's get back to a little more Christmas and a lot less of the other stuff.

Have a Blessed Christmas Season! Cris

Stories from this Summer in Baltimore

2008-11-27T22:54:00.000-06:00

http://www.hemifoundation.org

If you go out to http://wjz.com/video and do a search on "Jessie", you can see all the news stories that were done on Jessie this summer in Baltimore.

There are 25 different videos...I had no idea that they did this many stories on her this summer in Baltimore.

I wonder if there is a way to preserve them.

What a trip down memory lane.

Cris

Happy Thanksgiving ; Jessie the Flower Girl

2008-11-27T20:25:00.000-06:00

http://www.hemifoundation.org

Happy Thanksgiving to Everyone! We have so much to be thankful about this year. Jessie has been seizure free now for almost 6 months, and she gets stronger and stronger each day. We are blessed in this economy to still have our jobs. Everyone in our family is healthy for the most part, and we are almost back to a normal life again. I just realized it has been 2 weeks since my last post, and that is a good sign.

The Hemispherectomy Foundation is doing GREAT! Check out the new website at http://www.hemifoundation.org . Also, we have Christmas cards for sale this year on the website, that feature the ART of some of our children...including Jessie.

Yesterday, we went to Dallas and met a nice family from Rowlett whose son recently had a hemispherectomy. His name is Kenny, and he is doing very well. Be sure to say a prayer for his speedy recovery.

For those of you in the Baltimore area, today, Thanksgiving day, they ran a 30 minute special on Jessie's journey, from the beginning to the end. I didn't get to see it, but I heard that it was very good. It may be on the WJZ website, but I haven't found it.

Last weekend, Jessie got to be in a family wedding. This is Doug and April, and they asked Jessie to be in the ceremony as a flower girl. She did great! Here are some pictures.

Thanks to everyone who has kept us afloat in 2008. We will be forever grateful for you support and encouragement. We couldn't have done it without you all.

God Bless,

Cris and Kristi

And More Therapy!

2008-11-14T17:44:00.000-06:00

http://www.hemifoundation.org

More Home Therapy Video!

Nothing was broken in the making of this video.

Well, Maybe one thing!

Therapy, Therapy, Therapy!

2008-11-13T19:20:00.000-06:00

http://www.hemifoundaiton.org

Jessie is in therapy A LOT...9 times a week to be exact, plus tutoring and home therapy. She is one tired little 6 year-old by the end of the day. Here's some video of some of her home therapy. We are begining to use her Therapy Trike without her brace on. We think that it makes her use her leg more to build strength. That leg has atrophied significantly.

The Therpaist said that he saw independent movement in her thumb, forefinger, and middle finger. I haven't seen it, but it still made us feel good.

Notice Jessie pushing with her left leg in these videos.

Below is a close-up of the same thing.

Speedy Gonzalez!!!

Our Alma Mater : Texas Tech University

2008-11-01T23:09:00.002-05:00

http://www.hemifoundation.org/

Number 7, Texas Tech University just beaten number 1 in the nation, "tu" (texas university) in an incredible game!!! I'm now sitting at my computer, in my signed Graham Harrell #6 jersey, remembering that the two top guys on the team are not only Heisman Trophy candidates, but they are also pretty incredible men with a whole trophy case full of class. Most of you have seen this picture, but I wanted to share it again, as it really speaks to what amazing individuals these two men are.

Here is Jessie getting her jersey signed by Graham Harrell at this years homecoming game against Nebraska.

Jessie with her bud "Raider Red".

Graham stuck around and signed every kid's jersey or pad or hat or whatever they wanted. No child was left unattended, including the big kids like me.
Supporting our Red Raiders!!!

Below is a link that I posted way back on July 26th of this year while Jessie was still in the hospital. It's fun to go back and read it.

http://jessiekelley.blogspot.com/2008/07/texas-tech-red-raiders-win-2009-bcs.html

Fight, Raiders Fight!

Fight for the School we love so dearly!

We'll hit'em high!

We'll hit'em low!

We'll push the ball across the goal!

Tech, Fight, Fight!!

We'll praise your name.

Boost you to fame.

Fight for the Scarlet and the Black!!

We will hit'em, We will wreck'em!

Hit'em! Wreck'em! Texas Tech!

And the Victory Bells will Ring OUT!!!

Cris

Just got an update on Sunday. Tech is now #2 in the AP top 25 poll !!!!!

Google

National Champions

Hemispherectomy Foundation : What we do and how we finance it!

2008-10-30T10:31:00.000-05:00

http://www.hemifoundation.org/

Someone asked me the other day, "Cris, what does The Hemispherectomy Foundation do?" For a minute, I was a bit offended, thinking how could they NOT know what we do. Everyone knows what we do!

But then I thought about it, and realized that just because I've been immersed in the foundation for months, and so have everyone else who is part of the foundation, there are many people out there that don't know what The Hemispherectomy Foundation is all about. So here is the breakdown, starting with our Mission.

"The Hemispherectomy Foundation is dedicated to children and their families who have undergone, or who are considering hemispherectomy brain surgery." Ours is a mission of HOPE. Hope that the remaining brain hemisphere can help these children and families to live life to their fullest potential.

This mission is accomplished through many things, but at the root is Support. We have a hospital gift program called "Hemi Hugs", where every child in the hospital receives a care package with age-appropriate gifts. This is as much for the family as it is for the child. We want to show the child and the parents that someone understands the serious nature of this surgery and the long-term consequences. We want to show that we care.

We offer support, by helping families connect with other families who are going through or who have been through this life-changing experience.

We offer college scholarships to kids who have overcome adversity and who are attending college, and in 2009 we will offer Camp scholarships to those who may benefit from a camp setting geared toward the special needs of our children.

We offer educational support from our Foundation Teacher. Our families can ask question to and advocate and teacher who has worked with school systems and special needs kids, and get an honest response that has their best interest in mind.

We also do many things that are not part of our official mission such as holiday cards, birthday cards, and holiday gifts. We talk to families who are looking for answers, and help them find those answers. We'll try anything to help our families. We have one director who is helping a family from Bosnia, find a hospital in Germany that can help them out. Private emails and phone calls are a weekly event between our directors and families.

We have directors on the East Coast, West Coast, the Midwest, and the South. None are paid or ever will be paid.

The Hemispherectomy Foundation operates on a zero ($0.00) expense budget. That means that we have NO PAID STAFF. Our Attorney donated his services, our CPA donated his services, our Accountant, the same, teacher the same. Even our office printing was donated. Every person from our CEO to our Specialty Directors to our Angel Voluteers work for $0.00 . They work out of sincere compassion and for the love of our children and families. No one is paid and no one ever will be. It's in our by-laws. All the financial support goes to the kids and their families. That's not our goal. THAT'S THE RULE !

Even our Hemi Hug hospital care packages and holiday gifts are all "GIFTS-IN-KIND" . The postage is even donated. These are not taken out of foundation funds.

The foundation funds are reserved for things like College Scholarships, Camps, Aid, and in 2009 some will go toward the Hemispherectomy Reunion in Baltimore. In years to come, this list will expand and we hope to ensure that no need goes unmet in our hemispherectomy community.

I know that some of you are donors, and I want you to rest assured. As the CFO of The Hemispherectomy Foundation, these funds will be carefully guarded and not squandered as so many non-profits have done. These funds will go to support our mission and no where else!

I sound like a politician...ugh, that's the last thing that I want, so I'll stop.

If anyone every has any questions about The Hemispherectomy Foundation, and our mission or how we operate, don't hesitate to email me at cris@hemifoundation.org .

God Bless,

Cris

For the Glory of God!

2008-10-27T10:11:00.000-05:00

http://www.hemifoundation.org/

Time has a way of pushing things to the back of your mind. Memories become foggier, and are replaced with more recent happenings. It's nice to lose the bad memories, but there are others that we try desperately to hold onto forever. I really have no desire, whatsoever, to remember how I felt when Jessie gave me a high-five before she walked down the hall with Kristi and jumped up on the operating table with a smile on her face...but that memory won't seem to go away. It never will.

On the other hand, the memory of the amazing things that God did with communities and people all over the world, is beginning to fade. That doesn't seem quite fair. Yet, maybe there is a reason for this. A constant reminder to consciously remember these wonderful things. The amazing things that God did with communities and people is a memory that I refuse to let go with time. I don't ever want to forget the Amazing things that were done by Him and for Him in Jessie's amazing story. So, I thought that I would spend some time today, reminding myself of how things were and how things should be.

Our struggles over the past year and a half have brought back a relationship with Jesus that I desperately needed, and you can read that journey if you happen to have a couple of hours to start at the bottom of this blog. I have been very honest about that. My eyes were opened when I saw the amazing power that He has over communities, people, and all things in the world. There is NO other explaination. Kristi and I used to sit back and marvel at what was going on as people from all over the world came to support Jessie and our family. "Coincidences" happened on a daily basis that could not possibly have been coincidences....there were too many. They were driven by a higher power. No one will ever be able to convince me otherwise.

When we started The Hemispherectomy Foundation, people from all over the US and world were delivered to us as we needed them, so that this foundation would work and prosper. It's as if the right people came at the right time for the right purpose.

These are memories that I don't ever want to see lost, because these are the exact ones that rejuvenate my faith on a daily basis. They remind me that I have nothing and that all things that I do, should be done for the glory of God and that when I start doing them for myself or other reasons, I am missing out.

I want to do ALL things for the glory of God. Period. However, I will be the first to admit that I fail miserably at that goal on a daily basis. It seems that as the week goes on, I focus more on me and less on Him. Maybe that is why I'm writing this today...as a reminder to myself.

The bottom line, is that I see a lot of really good memories fading, and that is OK, but I cannot forget Who was behind all the great things that have happened in the last year and a half. It was too BIG. It was the BIGGEST thing that I have seen happen in my life and I don't ever want to forget that.

Have a blessed day!

Cris

A Halloween Treat for Hemispherectomy Kids All over the US and World !

2008-10-23T22:53:00.001-05:00

http://www.hemifoundation.org/

While most of us were taking care of our day-to-day business, a very special group of angels from The Hemispherectomy Foundation were busily trying to make the day special for Hemispherectomy children all over the United States and even in other countries.

Four angels, Caren Jennings, Traci Cottrell, Lindy Shelton, and Jen Steward created Halloween treat bags and toys for all children who are part of The Hemispherectomy Foundation. These Halloween Hemi Hugs were sent out in mass earlier this week to the delight of parents and children who have undergone the same surgery as Jessie.

Many were overwhelmed, as they are not used to being treated the Aledo way. Caren, Traci, Lindy and Jen are working on that one package at a time.

Below is a picture of one of our kids who received a Halloween Hug. One of the prizes in the bag was this nifty pair of glasses, which he is modeling below.

This is Aiden Waters and is the son of Rachel Waters, The Hemispherectomy Foundation's Specialty Director - Sturge Weber Syndrome. They are on the West Coast. Aiden recently had his surgery and is recovering well. Aiden's story is at http://www.aidenslife.com/ .

God Bless,

Cris

http://www.hemifoundation.org/

A New Image and Logo for The Hemispherectomy Foundation

2008-10-23T22:32:00.000-05:00

http://www.hemifoundation.org

Thanks to Jay Stringer, Pressman Printing, and their artist Teresa Miller for creating The Hemispherectomy Foundation's new image. This is the way our Non-Profit Corporation will be branded on all things in the future. We are so proud of our new look and how it totally reflects our Goal to give HOPE to families as they struggle with hemispherectomy surgery.

If you every need printing of any type done, please go see Jay at PRESSMAN PRINTING, INC. 8308 Clifford Street - Fort Worth, Texas 76108

817/246-2460 - Toll Free 1-888/246-8877 - Fax 817/246-2467

They are extremely professional and do top-notch work!!!

http://www.hemifoundation.org

An AMAZING Creative Memory of Jessie's Make-A-Wish Trip

2008-10-22T21:16:00.000-05:00

http://www.hemifoundation.org/

We got an email from Debbie Fitzpatrick about a week or so before we left for Baltimore. We had never met her, nor had we ever even heard of her. She told us that she wanted to make a scrap book of Jessie's Make-A-Wish trip for us.

To be honest, getting pictures together for her was the last thing that we wanted to do. Jessie's surgery was coming quickly and we had so much to plan. Well, Kristi decided that we would never get around to documenting the trip, so we quickly put pictures together and sent them to Debbie. The next four months was a whirlwind. We forgot about Mrs. Fitzpatrick and the pictures.

So a few days ago, we get a call from Debbie and she says that she has the scrapbook ready for us and would like to come by and give it to us. Wow!!! We had totally forgotten.

So Debbie and her husband came by on Sunday to deliver the scrapbook. Well, scrapbook doesn't really do it justice. These were works of ART !!!

Debbie created an amazing 2-volume set of wonderfully crafted pages documenting Jessie's Make-A-Wish trip like I have never seen. OK, I'm just a dumb guy, but these books were INCREDIBLE. We were such bad hosts, because we couldn't keep from looking at them while they were in our house.

I don't know much about Scrap booking, but I have watched Kristi and I have done a page or two myself. Please don't spread that around to my guy friends. I know how much work these pages took, not to mention the cost of Creative Memories gear. There were two full volume scrap books.

Each page was custom made to match the pictures. Debbie would take a theme from one picture and customize the who page around that theme, using intricate cut-outs and backgrounds, to three-dimensional widgets to complement the entire presentation.

Oh my, I'm starting to sound like a girl....need to go belch loudly or kill some game.

Enough said, the books are amazing, and if you are ever over at the house, please ask to see them. We are so proud of them and thankful for what Debbie did for us. Her time, expense, and compassion cannot be compensated.

Debbie, If you are reading this, Thank You from the bottom of our hearts.

Here is a picture of Debbie and her family.

Thanks again Debbie.

Cris and Kristi Hall

http://www.hemifoundation.org/

Aledo Drilling

2008-10-22T20:58:00.000-05:00

http://www.hemifoundation.org

I'm not anti-drilling at all. My dad worked for an oil company his whole career and it was what kept food on our table. I do believe, however, that everyone involved in Oil and Gas exploration, drilling, and production need to be good community citizens.

A friend of mine at work has a ranch next to her neighborhood where much drilling has been taking place. I had no idea just how invasive this can be, so I thought that I would share her blog with you so that you can see her perspective.

www.barnettshalelife.blogspot.com

I hope that the drilling companies, land owners, government agencies, and communities can all work together to make this a win-win. I hope that all the companies, owners, etc...are pumping money back into the community too. I believe that it is their responsibility.

I can think of one non-profit organization that would love to have their support. (http://www.hemifoundation.org)

Kind Regards,

Cris Hall

Google

Sibling Abuse or Therapy...You decide.

2008-10-17T21:11:00.000-05:00

http://www.hemifoundation.org

For some reason, Jessie really got a kick out of doing this, and she used her left arm more than we've ever seen her use it since surgery!! Who would have guessed this would motivate her to use the arm that she normally just wishes didn't exist. I hope Matt's butt can stand up to the therapy, cause we might have to do more of this!!

This cracks me up every time I watch it !

Oh, and I also forgot to report something else. Today, Jessie took off both shoes, both socks, and her AFO (brace) all by herself !!!

Go Jessie, Go!!

Blessings to All, Cris

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Adderall - Side Effects

2008-10-16T10:37:00.000-05:00

http://www.hemifoundation.org

I almost forgot to add side-effects.

Adderall is an amphetamine, so it has addictive properties. In addition, it is an appetite suppressant. Although this is a side effect, Jessie had a whole lot of weight to lose after 3 cycles of steroids, so the loss in appetite has been a good thing. With here weakened left side, it is much better for her to be on the lighter side, than the heavier side.

She still sleeps great and so far we haven't seen other side effects.

Cris

Adderall ; It Works!

2008-10-16T02:32:00.001-05:00

Hi All,

As many of you know, Jessie's rehab neurologist recommended Adderall for Jessie to help her focus, especially while at school. I wrote about this several weeks back, and promised an update. Well, here it is. Adderall Works!!! at least for Jessie.

Here's how we came to that conclusion. When school started in August, we started an unofficial Blind Study to evaluate Jessie's performance on Adderall (2 different doses), and none at all. The results were very obvious after only a few days, but we kept up with the study, to make sure our sample size was large enough.

The Study: For seven weeks, Jessie's 1st grade teacher would give Jessie a "Focus" grade every day at the end of the school day. She would not know if Jessie was on 5 mg, 10mg or 0 mg of Adderall. At the end of the trial, the results were striking.

On average, when Jessie was on 0 mg, her "focus" grade was a "C", on 5 mg a "B", and on 10mg an "A". So Jessie will continue on Adderall, but we may look at the time released version (Adderall XR), as her focus tends to diminish as the day progresses and the medication begins to wear off. There is also a similar drug called Vyvanse which may help to get her through the early afternoon at school. We don't give her Adderall during the weekends.

So bottom line, Adderall is good for Jessie. It may or may not be good for other kids, and we have no idea the long-term affect it has on kids who have had Rasmussen's Encephalitis. We're just going to have to take that chance. We'll keep you posted.

Peace and Blessings,

Cris

4 Months Post Surgery and a Texas Tech Weekend !!

2008-10-12T22:16:00.004-05:00

http://www.hemifoundation.org/

On June 11th, 2008, at Johns Hopkins Children's Center, Jessie had radical brain surgery to remove the right half of her brain (hemispherectomy). Dr. Ben Carson's head resident, Dr. Hsu came down to Pre-Op and asked Jessie if he could use a Sharpee pen to write on her head (to mark the side of the brain to remove). Jessie was a good sport and said "OK, but can I write on your head?". So, he gave her the pen, and she wrote "Texas Tech" across this "Michigan Man's" forehead. An hour later Jessie went into surgery with the whole world praying for her, Dr. Carson and the entire staff at Hopkins.

Now, fast forward exactly 4 months. (October 11th, 2008). Today, Jessie walked into Jones ATT Stadium in Lubbock, Texas for her 7th Homecoming game. Not bad for a kid who is only six, and not bad for a kid who, only 4 months prior, had the most radical brain surgery in existence. Jessie, we are so proud of your hard work and AMAZING recovery!!

Fight, Little Raider, Fight!

Gun Up with Raider Red at Raider Alley before the game!

Before the game, we got to go down the ramp and onto the field for pre-game. This is right off the Tech locker room where the Masked Rider's bronzed saddle is. The team touches the saddle horn as they prepare to run down the tunnel to start the game. We are all touching the saddle horn, and didn't realize who was right behind us. Check out who was sitting directly behind us in the locker room!! Heisman Trophy candidate, and number one quarterback in the nation, Graham Harrell !!!

This is the kids down on the field as the players warm up. Notice how well Jessie is squatting. This is something that she couldn't do a few weeks ago. We all thought that this was pretty cool to be down on the field with the players. Thanks to the Tech Athletic department for making this a special day.

Family Guns-Up ! They are all wearing their Michael Crabtree Jerseys, who by-the-way is the number one receiver in the nation and also a Heisman Trophy candidate. Kristi is wearing the Graham Harrell jersey that he signed for her birthday last year.

The athletic department posted The Hemispherectomy Foundation http://www.hemifoundation.org/ up on the scoreboard during pregame!! Thanks TTU for the plug!

This is the family with Craig Wells, Senior Associate Athletic Director-Chief of Staff at Tech. He took us down on the field and gave the kids a bag of Texas Tech gear and made us all feel very welcome. Thanks Craig for taking the time out of your busy pre-game to do this! We'll never forget it.

Here is #6, Graham Harrell and the rest of the team running out on the field for pre-game warm-ups.

Our view from down on the field looking up at the press box.

Josh and Jake giving each other a Texas Tech Twin Hug before the game.

Brad and Jada Morrow and their kids Brody and Shelby, from Aledo, came with us to the game. For those of you who know Brad, he always has a camera in his hand, so this is an appropriate picture of Brad. We had a blast together rooting on our Red Raiders !

Her is Brad, Shelby, Jada, Kristi, and Jessie. OK, she is only 6 years-old, and a whole football game is a loooong time in a kids reality! Smile Jessie !

Go ! Fight ! Win !!!!!!!

Emerging from the Tunnel; Our Texas Tech Red Raiders !

Brody with his Texas Tech - Double "T" eye-black.

The whole crew!

For those of you who didn't know, I was in the marching band at Texas Tech for 4 years, so this is one of my favorite parts of the game. Half Time!! Tech, by the way, has the 2nd largest marching band in the nation and have won countless awards, including the coveted Sudler Trophy given for consistent excellence in collegiate marching bands.

Here is Ruffin McNeal, The Texas Tech Defensive Coordinator after the game.

This is Steve Maines, who works for the Tech Atletic Department. Steve's family began following Jessie back during her surgery and recovery. Steve is also part of the Maines Brothers Band. His brother Kenny was playing at Raider Alley before the game. Thanks Steve!

OK, here is Graham Harrell signing Jessie's jersey (which happens to be a Crabtree Jersey) Oh Well, He signed all of the kids shirts, including Dad's. The really classy thing that he did, was he stuck around and gave autographs to every kid who wanted one...including the BIG Kids. Most of the players signed a few and then left. He stuck around until everyone was taken care of. I know that he was exhausted after the game and ready to go relax, but he took care of his fans first. Way to go Graham, you are our hero !!

Jessie was very proud of her Graham Harrell autograph! I'm sure that she's going to tell everyone about it at school !

It was a good day, but a long day. One Happy Little Red Raider ready for bed to dream about a Texas Tech National Championship, Cotton Candy, and no seizures!

I had to repost this picture from a couple of months back. Harrell and Crabtree did this for Jessie and this is one of those pictures that we will cherish forever! Thanks again guys! I don't know which one of you is going to win the Heisman Trophy, but either way, we can't go wrong.

By the way, the USA Today Poll has our Red Raiders as #5 in the Nation after their overtime win against Nebraska.

Keep up the good work boys! Keep up the good work Jessie !!

Praise God for allowing this beautiful weekend!

Cris

http://www.hemifoundation.org
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Texas Tech

A Special Donation

2008-10-09T12:30:00.001-05:00

http://www.hemifoundation.org/

The Hemispherectomy Foundation has been blessed to receive many donations, and many have touched our hearts, and physically touched the families that we serve all over the world. In the USA, Austrailia, Poland, Peru. Just recently we sent a care package to a child in the hospital in Ireland.

But what touches us the most often, is the very simple and small gifts, like the Lemonade Stand from months back.

This one is like that. The Foundation recently received a donation from a 1st grader at Stuard Elementary, named Max Davis. Max is a friend of Jessie's and was in her Kindergarten class (Ms. McGaugh) last year. Well Max decided that instead of gifts this year for his birthday, he wanted to raise money for Jessie and the Foundation. Can you imagine that! A first grader! And the note below is from another first grader, Greg McCann (sp?) that donated in Max's name. If that doesn't bring a tear to your eye, I don't know what will.

I was a grown man before I felt that kind of compassion, generosity, and selflessness. Boys, you are awesome and your parents just as much so for raising amazing kids.

Hat's off to all of you and God Bless from The Hemsipherectomy Foundation.

Cris Hall
Proud to be from Aledo, and Jessie's Dad