Thursday, December 29, 2011

Eight Months Seizure Free and Christmas in Wyoming

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 . 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! . 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 .

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

Thursday, June 2, 2011

Hemi Redo Summary - Success

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!


Wednesday, June 1, 2011

Jessie and Her Multiplication Facts

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.

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


Saturday, May 28, 2011

5 Weeks Seizure Free and Helping Make Breakfast

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.

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. .

Best Regards, Cris

Friday, May 6, 2011

Jessie Update : 2 weeks Post Surgery

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 .

Thanks for all of your prayers and support.

Cris and Kristi

Wednesday, April 27, 2011

1 Week Post Op for Re-Re-Do

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 . 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

Wednesday, April 6, 2011

5th Times a Charm - More Brain Surgery

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.


Cris and Kristi

Tuesday, March 8, 2011

Life is a Rollercoaster

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 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

Friday, February 18, 2011

A Chance to Tell Your Story and Make a Difference

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 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.

Saturday, February 5, 2011

"Hope in One Hemisphere" Hits the Internet

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

Sunday, January 2, 2011

Happy New Year!

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!