Thursday, October 30, 2008

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

Monday, October 27, 2008

For the Glory of God!

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

Thursday, October 23, 2008

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




Wednesday, October 22, 2008

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

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

Aledo Drilling

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

Friday, October 17, 2008

Sibling Abuse or Therapy...You decide.

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!!

video

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

Google

Thursday, October 16, 2008

Adderall - Side Effects

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!

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

Sunday, October 12, 2008

4 Months Post Surgery and a Texas Tech Weekend !!

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
Google

Texas Tech

Thursday, October 9, 2008

A Special Donation

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

Friday, October 3, 2008

Prayer Request

I haven't asked for prayers in a while, but I would very much appreciate your prayers for two people; one whom I've never met, and the other I only have known for a short while.

Jessie's good friend from Johns Hopkins, Macey, is back in the hospital and her lower digestive system is not working again. Please pray for sweet Macey, and her little sister Lilly and her parents Mickey and Tim. They are wonderful people and need some peace in their life. Macey is about to spend her 3rd consecutive birthday in the hospital and that just stinks!! They thought that she would finally have a birthday at home, but it doesn't look like that will happen. Macey is a very sweet, well mannered, and soft spoken little girl and her Mom and Dad are police officers in Baltimore. Please say a prayer for this family.

Rose Linder is someone whom I have never met, but her sister Jane became one of my best friends in less than a month. She is a compassionate, caring, and all-around good person. Her daughters, Samie and Nickie are so sweet as well, and I feel for them too, with their aunt in the hospital. Jane is The Hemispherectomy Foundation Northeast Regional Director. Rose is having severe liver problems (she doesn't drink) and is in critical condition. Please say a prayer for Rose, Jane, Samie, Nickie and the whole family.

May God Bless You for Your Prayers.

Cris