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 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

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

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!

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 !

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