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

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

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

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

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

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