A Foundation in the Making

Kristi and I have been struggling for the past few months on how to do something really BIG for the families of kids with Rasmussen's Encephalitis, and those who have had hemispherectomies. Some are attending colleges and need tuition assistance, others need vocational training, others need time at OT, PT Camps or rehab equipment. Most of them are in need one way or another.

So Kristi decided to create a scholarship fund for these kids. This will go a long ways. However, in order to make this thing really BIG, we need to find individuals with BIG Ideas and people who have BIG contacts and can make BIG things happen. So, please send in your ideas and how you might help.

We are not soliciting donations from our community, you have done enough Aledo!! And none of these funds will go to Jessie. It will affect a much larger group.

Here are some ideas so far :

• Make the scholarship into a foundation and find an attorney that could make that happen.
• Create a website to go along with the foundation.
• The Texas Rangers come up to Baltimore in early July for a 3-game series, could this somehow be used to raise money for the scholarship?
• Various people have connections with musicians (especially in the country scene) that might be able raise some money for the foundation.
• Various people have connections with sports figures that might be able to help.
• Attorneys and Politicians have some leverage to make things happen, and Jessie's Angels seem to have lots of contacts in that arena.
• Get the local Energy Companies involved, with all the work that is being done around Aledo.
• Get Cook Children's Hospital involved...Jessie started there and will ultimately end up there.
• What could Kay Granger do for Jessie? or Kay Bailey Hutchison, or Gov. Rick Perry? Jessie actually go a personal letter from Kay Granger. Roger Williams? Politicians in Baltimore? George W. Bush (He's in Baltimore area as much as Texas for a few more months)
• Bring President Bush in for a hospital visit at Johns Hopkins for awareness
• Get Dr. Carson involved in the foundation.
• Competition between attorneys in Texas vs Maryland? Donate for Jessie? Keep us with which state's attorneys donate the most.
• Create an on-line donation system (paypal) to make donating easier.

So, get those thinking caps on, and if any of these or other ideas make you feel compelled to do something, please...RUN WITH IT!!!!!

Because this surgery had a moratorium put on it for so many years, we are just NOW hitting the first generation of kids coming of age.

These Hemispherectomy kids have NO foundation, NO scholarships, NO assistance set up specifically for them. Let's make it happen. I've seen how powerful the community is when they set their mind to it!!!!

We will eventually need several million in donations to endow this thing properly, but if we start now, I truly believe that we can get the support and make it happen. Wouldn't it feel great to be a part of that?!!

Cris

Panic Attack

I haven't really sat down and wrote for a while, and I miss putting my thoughts down on e-paper. I have a lot on my mind, as does Kristi, with the surgery date rapidly approaching. Panic Attacks are becoming more frequent. I know that God will take care of Jessie, but I still can't help but worry about the 2% that don't make it through this surgery, or all the ones that lose so much physically and mentally.

Imagine that you are at Six-Flags, and you turn around, and one of your kids is gone. You don't panic at first, you calmly look around and scan the crowd, looking for that specific shirt or cap that you know that they are wearing. You definitely know that you will spot them. Then a minute passes, then two, and you realize that they are not within eye-shot...then you begin to move....fast, still scanning the crowd, now calling loudly...not caring what the people around you think. Then you start running and screaming, not knowing if they will be around the next corner or not...this IS panic. This is the panic that I feel daily.

If it were not for staying busy, family, friends, and especially my faith in God, I don't think that I would be a sane person right now....I'm not sure if I AM a sane person right now...

A Prayer for Jessie

Here is a prayer sent to us by Lee Ann Adams. It is taken from her words, words of others, and scriptures to give us all something SPECIFIC to pray for. Thanks Lee Ann.

Together, as believers, we stand on the authority of God's word, that it is God's will for Jessie to be completely whole and restored in the mighty name of Jesus. His word says, when two are more are gathered in his name, He will be, so we bind ourselves together standing in agreement on His word interceding on behalf of the Hall Family. We agree in corporately for: Dr. Carson, Dr. Vining, Diana Pillas and their support staff of doctors and nursesto be skillfully guided by the Lordto have good judgement from God's wisdom, knowledge and discernment being revealed to themto be careful and patient while also being alert and aware and to be able to make wise decisions as needed without waiveringto be filled with God's peace, love, compassion and concern For Jessie:that there would be no paralysis, not even partialfor full use of arms/limbsno blindness or issues with eyesightno cognitive lossno strokes or seizures during or after surgeryno more medicationslimited physical and occupational therapyno mechanical ventilatorno more than 2 week hospital stayno hemorrhagingno blood clottingno brain inflammation no increased fluid pressure within the remaining brain tissueno deathno loss of sensation or muscle control on either side of the body, especially the leftto keep her intellect in tact and increase her in knowledge and wisdomno complications with surgery or hospital or rehabilitation staysame bright bubbly child for the Halls:we stand and intercede on behalf of the Hall Family that they will stand on God's word and not waiver in faith and for their faith to grow by leaps and boundsfor the Hall's to believe God's word as being true yesterday today and always and to stand firmly on his word in all their ways, keeping God first in their livesfor them to trust the Lord with all their heart and soul and lean not unto their own understandingto have all their financial needs met above and beyond more than they could ask or hope for, that blessings would overflow abundantly more than they could imagine or understandfor a hedge of protection to surround their family and their mindsto stand against any fears, worry, discouragement, hopelessness, entering their minds, and if they do enter for them to quickly recognize these as not from the Lord and to cast them out immediately in Jesus' namefor their paths to be made straight with out any obsticales or detoursfor their protection and safe travelfor God's word to speak clearly to them and for his word to quickly come to mind as they need it for the Holy Spirit to direct their paths and guide them Lord, we give you the praise and glory for hearing and answering us in all these concerns. We trust your word to not return to you void. We thank you that by Jesus stripes we all are healed. So we thank you for Jessie's healing, in Jesus mighty name we pray. Amen.

Scripture for Jessie Jeremiah 29:11
'For I know the plans I have for you [Jessie],' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.' www.prayers.org has many prayers you can look up for wisdom, overcoming fear and worry, provision (give us this day our daily bread), guidance and deliverance, submitting all to God, handling trouble or calamity, renewing the mind, conquering the thought life, casting down imaginations, victory over fear and worry, safety, knowing God's will, Godly wisdom, protection for travel, abiding in Jesus, peace in the home, child's future, perserverance in prayer, hedge of protection, healing of the handicapped. These and more can be found in the book, Prayers that Avail Much by Germaine Copeland. Intercessory Prayer by Dutch Sheets is an incredible book on how to pray for others needs.

8 Day Prayer Vigil - Organized by New River Fellowship

Details about 8-Day, 24 hour Prayer Vigil for Jessie, Organized by New River Fellowship:

June 1 & June 8, New River Fellowship in Hudson Oaks is going to share a little about Jessie and her surgery in service (9:30 & 11:00) and have a prayer sign up. In the NRF atrium you can sign up for an hour shift(or two or three) to pray for Jessie, her doctors, nurses, recovery, rehabilitation and more.

The prayers slots will be 24/7 beginning Sunday, June 8 at 9 am through 11:59pm on June 15th. We will have around 182 1 hour shifts to get covered. Throughout the week the sign up will be available for other friends and family if they can't make it during the weekend services. We are planning on giving out pink bracelets to all who sign up for a shift to serve as a reminder to pray for Jessie and her family as well as an info card with prayer prompts.

Kristi's best friend in college, Maura Flint, and her family are taking over some of the late night, early morning slots. They live in England so the time difference is perfect. World-Wide prayer, isn't that cool !!!

For questions, or if you want to participate, but can't make it to a service, please contact Megan Lacefield, Children's Pastor, New River Fellowship : mlacefield@nrfchurch.org

Hemispherectomy Conference & Family Reunion

In July of 2009, there will be a Hemispherectomy Conference and Family Reunion for families of children who have had a hemispherectomy. In addition, Neurologists, Neurosurgeons, councelors, and other medical professionals will be there for the families and kids. There will be seminars, workshops, and activities for the kids. The Hall Family, of course, will be there to award the Jessie Hall Hemispherectomy Scholarship.

Jessie will be 1 year post-op by the time the next Conference and Reunion happens. In addition, we were honored that they added a page for the Jessie Hall Hemispherectomy Scholarship. If you get a chance, take a look at this website.

http://www.hemispherectomy.info/

Hopefully, as more support and awareness is built for these kids, this organization will grow and support will grow for the families, doctors, and especially the kids that are affected by hemispherectomy surgery.

If anyone has any ideas on how to raise money for the Scholarship Fund for these kids, please send Kristi and email at Kristi@Hallzoo.com.

New River Fellowship Sunday (May 25th) Service and Prayer Vigil

As many of you know, Kristi, myself, and the kids, recently made a commitment to God and our new church, New River Fellowship (NRF) (http://www.newriverfellowship.org/index.cfm ) in the Aledo area near Hudson Oaks. We are blessed to find a church home where we fit-in and where both us and the kids enjoy going to worship. We are looking forward to becoming more and more involved as we grow with our new relationships. Plus the music rocks!!!

We have heard many times how strong we are and how well we are handling all of this with Jessie, but I want everyone to know that we would not have been able to navigate this journey without the love of God and the love of our family and friends. We’re not driving anymore…the steering wheel has been turned over to a higher power.

On this Sunday, May 25th, the pastors at NRF, are planning to introduce us to the congregation and to pray together for Jessie and our family. We will be at both services this Sunday (9:30AM, 11:00AM) Yes, we will actually make the early service on Sunday…no smart remarks!) We are honored that they are doing this and we are honored by all of the people all over the world that are praying for Jessie and our family.

The Children’s Pastor, Megan Lacefield, and many others in the church have made us feel so welcome and a part of the community. There will be a sign-up sheet in the atrium at Sunday’s service for shifts on a week-long prayer vigil that is being organized for Jessie, Our Family, and the doctors. Starting on June 8th through June 14th, the congregation will be praying 24 x 7 that Jessie will come through surgery with flying colors. How cool is that? These are the kinds of things that make us feel proud to be part of NRF. In addition, they will be handing our prayer cards and even pink bracelets to remind us all to pray for Jessie.

If anyone would like to come visit this Sunday, you are most welcome. We look forward to seeing you there.

If anyone has any questions, please email Megan at mlacefield@nrfchurch.org

Thanks to AnaPath Diagnostics for Flying Kristi's Mom & Dad up for Surgery

We are so excited to hear that Nancy and Gary Kelley (Kristi's Mom and Dad) are going to be with us in Baltimore for Jessie's Surgery thanks to a donation from AnaPath Diagnostics. It is so important that Nancy and Gary will be with us, along with my Mom to support us during this difficult time. We appreciate this donation so much.

A huge thank you to AnaPath Diagnostics in Cheyenne, WY, Office Manager Cindy Hegner, Dr. Ron Waeckerlin and Dr. Phillip Haberman. We appreciate your kindness and generosity so much.

Cris and Kristi Hall

Thank You to the Aledo PTO Basket Donors and Barry Family

For the PTO Carnival this year, a group of businesses and families got together to make a basket for Jessie filled with all kinds of goodies for her at the hospital and beyond. The basket was put up for auction, and the winner got to give the basket to Jessie.

The winner of the basket, and highest bid, went to the Barry Family; Mark, Nicole, Ashley, Cameron, and Carson. We thank them so much, as well as the donors for doing this for Jessie. It was an amazing basket filled with DVDs, CDs, outfits, hats, games, and so much more.

We appreciate the Barry family and their generosity for the PTO and for Jessie. Also, it was really special in that Cameron is a friend of Matt (our oldest), and in the same class at Stuard Elementary.

Thanks again to the donors and to the Barry Family!

Thank You to the Carnival Donors

We would like to offer our sincere thank you for all the donors and contributors to the Cracker Barrel Carnival for Jessie last month, and a special thanks to Michelle Bartee for organizing it and running it. Thanks to the following people and businesses for prize donations, volunteer work, and contributions to Jessie's Fund:

Priced Right Signs
QXFM Radio 89.5
Greene’s Florist
Weatherford National Bank
Debonair Salon
Matheson Tri-Gas
Weatherford Chamber of Commerce
Larkbook Store
Phoenix Transmissions
Kroger
Hutch’s
Woodbend Photography
Wal-Mart – South Main – Mineral Wells
Thomas Takes
Employees of Principle Financial Group
Red Carpet Limo
Jerry’s GM
Jump-x-treme
Power House Gym
Bruce Bryant – hay bails
Jerry’s - GM
Etched! Custom Laser
Phil King – Texas flag and $
Western Heritage Furniture - $
Galbreaith Pickard - tent
Plains Capitol Bank – Gift card for family – suckers for carnival
Yesterdays – Gift cards
Dry Clean Super Center - GC
Wild & Chic Boutique - GC
Art ‘N Tiques - GC
Back to Yesterday Antiques – T-shirt
Craig’s – PA system
Bullard’s Vet Supply – Frontline flea med
Something Special Boutique - Angel statue
Claire’s - jewelry
City Lights Theater – movie tickets for 4 in a GC
Rosa’s Café – 2 GC’s
Albertsons - GC
Texas Tire – 2 GC for balance and rotation
G & D Pool Supply – buckets, hoses & towels for car wash
Connie Morris – all the beanie babies
Finish Line Auto – 5 Free oil changes
“Mr. Dan” Ray DJ - time
Pizza Place – 8 free sm pizza’s
Jim Franklin – Knothead Jr. the clown - time
Kelly & Co. Spa & Salon - GC
Expressions –MW - GC
Dakota’s – MW - GC
Robin Barber – larger stuffed animals, giant teddy bear
Sonic South Main – Gift certificates
Planet Beach – Gift Certificate
Subway – Gift Certificate
Gibson’s – Vacuum Cleaner
Chicken Express – cups and 2 gift certificates, use of marquee
Starbucks – 3 lbs of coffee
Pizza Hut – bam bams & coupons
First Baptist Springtown - donations
Kentucky Fried Chicken – MW – Gift Card
Cole’s House of Flowers – MW – 2 potted plants
April Brown – Blues Clues Bounce house
Quik – lube – MW – oil changes
What-a-burger – MW - coupons
Dominoes – MW - coupons
Pullium Pools – MW
Cooper Candies – 6 bags of peanut brittle for the cake walk
Priced Right Signs - doing the banner, t-shirts, yard signs & the giant check
QXFM Radio 89.5 - radio spots
Greene’s Florist - 100 or more balloons
Weatherford National Bank - 500 balloons, popcorn machine, popcorn, bags & volunteers to run the machince
Debonair Salon – 6 gift cards for silent auction
Tri-Gas - 2 tanks of helium for the balloons
Weatherford Chamber of Commerce - e-blast to ALL chamber members the info on the carnival
Etched Custom Laser - cakes for the cake walk
Larkbook Store – $20 gift card
Phoenix Transmissions - sending a check, $
Kroger - GC
Hutch’s - GC & put up a donation jar
Woodbend Photography
Wal-Mart – cash for 600 bottles of bubbles
Thomas Takes - $ pay for bounce house
Employees of Custom Design Employee Benefits Inc. - Tom Takes Employees who donated more $ to finish paying for the 2 day rental of the bounce house and extra cash for Jessie's fund,
Red Carpet Limo - Limo drive home after school
Jerry’s GM – Golf for 4 and bag
Jump-xtreme - gave 10% off and did not charge the $50 for delivery on both days, plus $ to donate
Power House Gym - put up a donation jar
CBS 11 coming out to shoot video

A God Wink for the Aledo Ladycats

Last night, the Aledo Ladycats softball team, sealed their place in Friday’s State Playoff Final in Austin, by beating the Joshua Owls 1-0. Sporting pink armbands for Jessie, and playing with hearts of gold, these girls earned their place in the #1 spot in the nation, according to the USA Today / National Coaches Association Poll (http://www.nfca.org/top25/index.php?cat_id=9 )

Jessie was invited up to the field house before the game, and these nice, young ladies presented Jessie with a framed picture of the team. It was the same picture that Brad and Jada Morrow ( http://www.bearcatimages.com/ ) had given Jessie last week showing the Ladycats with their pink “Jessie” armbands. Last Tuesday, I had taken this picture to “Frame and Fortune” in Aledo to have it framed. Well, sneaky Jennie Suchocki (the owner of Frame and Fortune) framed it, then had all the girls sign it and they presented it to Jessie before the game. Haylee Bell also works at Frame and Fortune.
It was nice to meet Lyndi, and Whitney, Kay Kay, Halyee, and the rest of the girls. They seemed so relaxed before the game, and took Jessie into the locker room and showed her around and had another picture taken with her. These girls are a really neat, fun-loving group. Brad is going to print up these newest shots, and sell them with proceeds going to the Jessie Hall Hemispherectomy Scholarship Fund to benefit other kids like Jessie. ( http://www.hallzoo.com/JHHS.htm )

I was amazed at the maturity of these young ladies. Here they are, getting ready to play the biggest game of their lives, and they were not at all self-absorbed, self-seeking, or egotistical. Instead, they selflessly took a sick little girl and made her part of their “team” for a few minutes. These are the qualities that, I believe, God winks at.

While we were talking to the girls, I excitedly ask if they were going to “Kick some butt” tonight, and they, of course shouted enthusiastically “yes” in response. Well, I learned a powerful lesson about what NOT to say in front of a 6-year old, which would come back to haunt me later that night. So, fast forward to right before the first inning; Jessie is on my shoulders, and we are watching from the first base side (there was standing room only). The girls are all facing us and Jessie yells quite loudly “Ladycats! Kick those owl butts!!!”. Everyone within earshot, turned around to see this smiling little girl who thought that she had said something perfectly acceptable, honoring the Ladycats. She was not embarrassed what-so-ever, Dad and Mom, on the other hand tried to make ourselves real small.

Anyway, we enjoyed the game immensely, but unfortunately, had to leave in the 5th inning. We were over in the bullpen, and Jessie had a mild complex partial seizure. She was fine a few minutes later, and fell asleep. We listened to the rest of the game on the radio, and were so excited that the Ladycats won.

The Ladycats are a great group of girls. Last night, they were facing the most important game in their lives, and they took time for a sick little girl. That is character!!

This morning, Jessie woke up, and the first thing that she asked was, “Did the Ladycats win?” She didn’t remember a thing about her seizure or how she got home.

The Jessie Hall Hemispherectomy Scholarship

Announcing the Jessie Hall Hemispherectomy Scholarship

http://www.hemispherectomy.info/

http://www.hallzoo.com/JHHS.htm

Many of you know Kristi, Jessie’s Mom and my loving wife. And as you know, she is a caring, thoughtful, and compassionate person, who rarely thinks of herself and makes daily personal sacrifices for her family, coworkers, friends, and strangers. She is a beautiful person both inside and out.

Although, she cries and prays daily for Jessie, she has found time to come up with a plan to bring honor to Jessie and to help other kids who are faced with the challenge of Hemispherectomy Surgery, and who overcome the challenge to do great things.

Kristi is pleased to announce The Jessie Hall Hemispherectomy Scholarship. The JHH Scholarship fund is a one-of-a-kind fund set up exclusively to help children who have undergone a Hemispherectomy brain surgery, and who have gone on to do amazing things under the circumstances.

The JHH Scholarship will be awarded each summer to a child who has been accepted to an accredited university and will begin college in the fall. Initially, the JHH Scholarship fund will be funded by Kristi Hall with a commitment of $1000 per year for 20 years, or $20,000. It is her dream that eventually, through private and corporate donations, that this fund become endowed and enough money is raised to send all hemispherectomy kids, who are capable, to the college or camp of their choice.

The first winner of the Jessie Hall Scholarship will be announced in July of 2008 and we pray that Jessie will be there to present the award.

If your organization, or another organization that you know of who would be interested in supporting such a cause, please contact Kristi at Kristi@Hallzoo.com or 817-312-2265.

Watch Channel 11 at 10:00 Tonight for Jessie's Baltimore Story

Be sure to watch Channel 11 (CBS) tonight at 10:00PM to catch the story of Jessie from Baltimore and Johns Hopkins Hospital. It will also be on the 11:00PM (10:00 central) news on WJZ - Baltimore. In addition, both CBS affiliate stations will post additional footage and information on their websites.

http://cbs11tv.com/ - Dallas

http://wjz.com/ - Baltimore

I'm not sure which footage will make the news, but they interviewed Dr. Carson, Jessie's brain surgeon, as well as Jodie (Hemispherectomy when she was 3 and she is 18 now), Jessie and Jodie playing together, Jodie's mom and dad, and Kristi and I.

It should be an outstanding news story!!

Ladycats for Jessie

Brad and Jada Morrow came up to the Aledo Athletics Fields this evening, while Matt was finishing his last game of the season and gave us a photograph that they had taken at the Regional Semifianls game last night in Abilene where the Ladycats won 12-0.

These awesome girls wanted to show Jessie how much they supported her. They were all wearing pink armbands. Girl Power !!! Congratulations Ladycats!!! With that kind of Unity, we expect to see you at the State Playoff Game!

Thank You Covington Wireless and the Covington Family

We also want to Thank Covington Wireless for the incredible donation of airline miles. Todd and Brandy Covington have a daughter, Mackenzie, who is in Jake's class. They generously donated enough miles to fly all of Jessie's grandparents up for a visit and her three brothers up for a visit as well.

The opportunity for Jessie to get to see her extended family while in the hospital is huge. I believe that it will help so much with her recovery. Not to mention that it will be good for her brothers and grandparents to see her. Pictures are worth a 1000 words, but being there is worth a million.

Thanks Todd, Brandy, Makenzie and Molly. Also, thanks to Karen Bell, Todd's executive assistant for making all the arrangements. You guys are great!!

Midwest Airlines : Thank You

Another big Thank You goes out to Midwest Airlines. For those of you that do not know, Midwest flew us round-trip to Baltimore this week, and they are flying us up for Jessie's surgery and back home after rehab.

B. J. Driefke is the Public Relations Assistant at Midwest, and she is such a sweet person. She made all the arrangements. She is also an avid reader of Jessie's Blog, and knows everything that is going on with Jessie. Thanks BJ!!

A final note about Midwest...If you ever get a chance to fly Midwest, Do It!! This is an incredible airline. It is old-style service...you remember the way airlines used to be. Nice roomy seats, basically every seat is first class, and the staff is so friendly. And the really cool thing is when they bring out the warm, gooey, chocolate-chip cookies. Jessie was in heaven.

After every flight, we thanked the flight attendants, and explained what Midwest had done for us. One of them actually started to cry, because she was so touched.

Thanks Again Midwest!

Caren Jennings

I wanted to show you guys who Caren Jennings is. She has been Jessie's guardian angel, and one of the main motiviating forces, along with Robin Seay (Jessie's Principal) behind Jessie's send-off, and so many other things that has brought this community together and made Jessie feel so special. There were so many others that helped, but there is no way to name them all. We'll just say everyone in Aledo.

Thanks Caren !!!! Her is a picture of Caren and Jessie.

Trailer Raffle Winner

We have so many people to thank, that we are never going to be able to get to everyone, but Kristi and I truly are grateful, and we are going to give it every effort to make sure that we thank you all. We are going to try one Thank You note at a time, and we'll get there. We enjoy writing the thank you notes and blogging them, but we're afraid that we may miss some, and for that, we are sorry.

First, the Wyoming Trailer Raffle finished up and I wanted to announce the winner. The winner was Larry Hankel. Congratulations to Larry from Cheyenne, Wyoming.

The picture below shows Donna and Joann Pauli drawing the winning name, and the next picture shows Mr. Hankel and his granddaughter Desha, with Kristi's Dad Gary Kelley.

Thanks to The Pauli's at The Welding Shop for donating the trailer and thanks to Nancy and Gary Kelley, Mark, Michelle, and Justin Salas for all the hard work in selling tickets, and thanks to all those nice folks up in Wyoming for taking care of Jessie. You are the Wyoming branch of Jessie's Angels. Thank You so much!!!

The Welding Shop
508 E. 1st St. 82007

All Clear for Surgery

Jessie was released today...horray!! A day early, and Dr. Vining found no seizure activity in her left hemisphere. What that means is that the Rasmussen's Encephalitis is not present and has not crossed over to the other side of the brain, and that surgery is still on for June 11th. I don't like to think about what would have been had this not been the case. Thank God!!

We received a comment on the blog that made us feel close to home. Evidently we have a young gentleman from Aledo High School attending Johns Hopkins University that took the time to read Jessie's log and post his well wishes. Aledo even extends to Baltimore.

I just got word from Nannette Samuelson, that the Ladycats won 12-0 in 5 innings. Awesome News!! She told me that the girls were all wearing pink arm bands for Jessie. Go Ladycats!!!!

Jessie talked to Miss McGaugh's Kindergarten class again this morning over the computer. The kids have so much fun with this, and it makes them feel close to Jessie and visa-versa. It will be so good for her rehab.

Diana Pillas (out-of-state coordinator and councelor) came by again. She is such a sweet lady, and really cares for the neuology kids. Dr. Vining is the same way. Always caring and concerned. The interesting thing about Hopkins, is that the doctors come in, and go straight to the child and then talk to the parent later. They all do this. It is part of the culture and quite refreshing.

Here's a picture of Johns Hopkins Hospital.

The Below Picture is the Kennedy Krieger Institue where Jessie will do her rehab after surgery. We also hope to get into Cook Chilren's In-Patient Rehab for a couple of weeks when we get home.

This is the Believe in Tomorrow Children's House at Hopkins where we have been staying. It is right across the street from the hospital and a lovely place.

This is our friend George W. Bush's house. Since Jessie got release early today, we went over to his house for a visit. We knocked on the door, and the butler told us that he was down in Texas...something about his daughter getting married. Anyway, we told him to let George know that Jessie had been by for a visit, and that we'd be back up in June and try to stop by again.

Jessie loves George W.
I'd actually never been to the U.S. Capital. I'm quite embarrased to say that I didn't even realize that Washington D. C. was so close to Baltimore until a few months ago. I never listened much in geography. It is a beautiful area, and Jessie and I experienced it for the first time together. Kristi had been here twice before on business.
Kristi and Jessie at George's House.

Dad and Jessie at the Washington Monument.

This was a nice trip and helped us get our minds off of all the other stuff. Jessie had a good day.

I had a hard time signing the consent to surgery form and I literally prayed to myself before I signed for God to give me a sign if I shouldn't sign the form. I asked Him to please make the pen not work if we weren't supposed to do this. I signed each paper and then gave them to Dr. Carson's PA.

Today when Dr. Vining was in, I asked her where Jessie fell in the severity range of Rasmussen's patients that she had seen before. "Are we early in the progression? Late?" She told us that Jessie was squarely in the middle. Some were much further along, and others showed less seizure activity. Some had more paresis, others had none. She also said that Jessie's EEG showed that she was, in fact, in a continuous seizure. I honestly don't know how she has done as well as she has with school, t-ball, and living in general. Her right brain is just in a continous electrical storm.

I also finished another book today, called, believe it or not "Saving Jesse", written by the mother of a child with Rasmussen's Encehpahlits from Canada. The story is hauntingly familiar. The main difference, is that this Jesse had no paresis, and lots more seizures.

We also ran into a nice teenage boy from NY here at the Children's house tonight. Dr. Carson is getting ready to remove a brain tumor that caused him seizures. This is a brilliant junior in high school whose seizures robbed him of a full sholarship to a prestigious prep school. I told them that we would pray for him tonight. I bet he has no idea how many people will be praying for him tonight and tomorrow.

We'll be back home tomorrow, and can't wait to get back to Aledo and our normal live.

Cris

20 Ways to Kill Time in the EMU

5/15/2008

Today was Jessie's second day in the EMU. For those of you that haven't had the opportunity, EMU stays can be a little monotonous. Cris is taking the night off, so I thought I would post a rare blog and list 20 Ways to Kill Time in the EMU.

1. Eat
2. Take your meds
3. Brush your teeth

4. Nurse shift change, take vitals
5. Watch Strawberry Shortcake (twice)
6. 2 minute invasion of doctors on rounds
7. Color
8. Watch a Barbie Movie (only once today!)
9. Walk around the room - distance limited by length of the "leash" or EEG wire.
10. Watch The Wiggles (3 times today . . .)
11. EEG Tech (Victor today) reattaches wires
12. Play DS
13. Call classmates,brothers, grandparents, aunt and cousin on video phone (that was fun!)
14. Snooze
15. Play with flashlight
16. Watch Hannah Montana (and dance and sing!)
17. 50 trips to the bathroom
18. Eat peanut M&Ms
19. Take pictures
20. Have a good visit with Dr. Vining and Diane Pillas - we may get to be discharged tomorrow!


It's been a long day. We are tuckered out. Jessie went to sleep as soon as she took her evening meds. A girl can only watch so many Wiggles, Barbie,Hannah Montana, and Strawberry Shortcake movies in 1 day! I think I'll join her soon. We are very fortunate to be here only a few days. We met a family that had been here 10 days. I don't know how they did it!

Good Night!

Kristi and Jessie

A Day in EMU

This morning, we checked Jessie into the EMU (Epilepsy Monitoring Unit) at Johns Hopkins. She has been through this routine quite a few times before at Cook Children's Hospital, so she knew the drill. Lots of wires glued to her head with the smell of acetone filling the air. The EEG Tech was quick, and she was all wired in ready to watch TV.

We are staying across the street from the hospital at The Believe in Tomorrow Children's House (Children's House for short). We are extremely blessed to be here. We can be by Jessie's side in 5 minutes easy. Today Kristi went back to Children's House to take a quick nap, while I stayed with Jessie. This was her first nap in a long time...she deserved it.

Children's House is similar to a Ronald McDonald House (I think...I've never been to a RMH). There are only a dozen or so rooms, and it is for parents of kids with life-threatening illnesses. It is amazingly quiet, and the staff is incredible. We share a kitchen with those on our floor, and there are lots of common areas such as TV rooms, game rooms, play rooms, etc.. It is set up for long-term stays, and we are blessed to be back here during surgery and rehab. This is where we will live, receive mail, do laundry, etc... when Jessie is here for surgery and rehab. http://www.believeintomorrow.org/housing_hopkins.html

Last night, they had therapy dogs in for the families, and the local Corvette club brought in a spaghetti dinner. The lady at the front desk even waited to feed the fish, so that Jessie could do it this morning, because she had shown interest the night before. They are all so caring here.

This morning, Dr. Vining (Jessie's Baltimore Neurologist) came in to see Jessie, and Diana Pillas (the counselor and out-of-state coordinator) came in to see Jessie. She spent a solid hour with us, and it was a nice talk. They are both very caring and compassionate people who are looking out for Jessie and our family. I think that no less than 3 other neurologist came in to see Jessie today. They were all nice and had excellent bed-side manner.

Jessie and Miss McGaugh had a nice surprise today when we hooked up a Video Conference between Johns Hopkins and Stuard Elementary. Miss McGaugh, Robin Seay, and I actually set this up a few weeks back so that we could help Jessie to feel closer to home. She smiled from ear-to-ear as she saw Miss McGaugh and all her classmates and talked to them. We plan on doing this each day this week.

She also did video conferencing with Grammie and Grandad, Matt, Jake, Josh, and Gramm, Papa, Michelle and Justin from Wyoming today. Ouving and Fonzie sang to along with Papa to Jessie. We plan to use this to help her feel closer to family during her rehab in June and July. If you could see the look on their face when she sees someone from home, you have to know that it will help her heal faster.

I was told by the local CBS station, that you will be able to see their footage on Dallas / Ft. Worth, Channel 11 at 10:00PM on Monday night. All of you will finally get to see Jodie, whom I have written about several times. She is such a sweet girl.

At the same time, the Baltimore station will be running their story on Jessie. Since you cannot get Baltimore TV, you can catch that on their website if you are interested. It should be posted soon after the broadcast. http://wjz.com/ This should be an excellent piece as they sent out one of their lead anchors to cover it, and covered Jessie and Jodie together, as well as some time with Dr. Carson.

God Bless all of you for your prayers and for being Jessie's Angels.

Meeting with Dr. Carson - Jessie's surgeon

Today, we met the surgeon that will be doing Jessie's hemispherectomy on June 11th, Dr. Ben Carson. He was a very quiet man, and a gentleman. Soft spoken, yet funny, and made us feel as comfortable as possible in this situation. There was a film crew in the conference from CBS, but it was like we didn't even know that they were there. We focused on Jessie and what had to be done. He explained most of what we already knew, but it was important that we went through the formalities, as he had no idea what we knew and that we had been researching this for so many months. I was very impressed with him, and so was Kristi.

We expected a 10 feet tall man, with a superman cape, but what we found was a humble compassionate man who only cared about our sweet little girl, and making her better. Her face twitched quite a bit today, and her speech is very slurred, but not as bad as yesterday. She seemed excited to meet him. I guess that she knew that we were as well, and maybe the excitement transferred over to her.

His entire staff treated Jessie so well, and we felt blessed to have him as Jessie's surgeon. Dr. Carson is arguably the world's leading surgeon on Hemispherectomies. He has done 65 in this lifetime, and was instrumental in making it a treatment for intractable seizures. He did not act like a world famous brain surgeon, however (whatever they act like). He was a man, talking to parents of a sick little girl.

When Jessie met him, she was on her best behavior. We were so proud of her. We had her dressed in one of the cute outfits that Melanie Adams brougt for her from some of Jessie's Angels and she was adorably pink. She looked like a little doll. Of course I'm her daddy, and she always looks like a doll to me.

She said "Nice to meet you Dr. Carson" in a slightly slurred Texas twang, when they met, and then shook his hand. Her eye's twitched, but also twinkled, because I think that she knew how important he was. I think that he might have been a bit taken aback, however, when she asked "Are you going to take out half my brain?" He paused, and thought for a minute, then responded with a question "Do you want me to?" and she quickly replied with a positive "Yes". This is from a 6 year-old. Jessie amazes me every day, with her maturity in dealing with this. She's 6 going on 40.

On the way through the hospital today, some random, but very nice lady called from across the hall. "Hi !! Are you Jessie?" She ran over and gave Kristi and Jessie a big hug and told us that she was praying for Jessie. Here we are halfway across the United States and people know Jessie's story. God, evidently decided that He needed to bring Jessie's Angels along to Baltimore in case we start feeling alone. Dr. Carson also explained to us today that prayer had been scientifically proven to help people heal faster. I'm sold !!

We check Jessie into the EMU (Epilepsy Monitoring Unit) tomorrow, and we will pray that there is no seizure activity on the left hemisphere. As soon as Dr. Vining, Jessie's Baltimore Neurologist (the leading U.S. expert on Rasmussen's) is satisfied, they will let us come home and be normal again for a while. I really just want an ice cold beer and a nice long nap.

I read that the Aledo Ladycats are headed to the Regional Semifinals in Abilene this Friday!! Great Stuff. We are cheering for those nice girls who signed the softball for Jessie. Go Ladycats!!

All Our Love,

Cris and Kristi

In Baltimore

We're in Baltimore now, and staying at the Children's House. It is housing for the parents of children with life-threatening illnesses that are being treated at Johns Hopkins. It is an amazing place, and the volunteers and staff are so nice and supportive.

The Millers came out tonight and did a joint interview with the local CBS station here in Baltimore. It was nice to see them again. Their daughter Jodie had a right hemispherectomy when she was 3 years old. She is 18 now and will be heading off to Pennsylvania to go to college in the fall. She and Jessie did a cute interview. It is so cool to see pre-surgery and post surgery side-by-side and knowing the possibilities that may lay ahead for Jessie. There are no guarantees, but the hope is enough for right now.

Unfortunately, Jessie had another bad seizure while the camera crews were still here. They were real cool, and didn't shoot her during the seizure. They got my respect for that. We had to administer Diastat again to stop the seizure, and I was running up to call 911, when her seizure stopped. I thought it kinda odd to call 911, when I was right across from the hospital. Anyway, she is sleeping now, and she won't remember a thing tomorrow. Denise Koch, from WJZ-TV Baltimore, who is a top anchor her in Baltimore interviewed us for about an hour. She seems to be a professional and caring person.

I got a call from Suzi back home, and she told us that People Magazine wants to do an article on Jessie. We are praying that all of this publicity is not meaningless hype. We have no desire for our daughter to be a celebrity. We just want to educate people about the disease, and hopefully make a difference somewhere.

Jessie's face twitched very bad all day today. The worst that Kristi and I have ever seen. Her mouth twitched enough, that it disturbed her speech. The disease is definitely progressing.

Tomorrow morning, we meet Dr. Carson.

Thanks to Jessie's Angels!!!

We're packing tonight, so I have to apologize up front for a hurried blog. Luckily Dad and Gail live near, so they will be staying at our house and taking care of the boys. Baseball practice, games, school, etc... They are going to be worn out when we get home.

I have a lot to write about, in terms of the send-off, but I figured that the best place to start, is with gratitude. We are so thankful to the community and proud of our community for the way that they supported Jessie. You made her feel special and us feel special, and we will always remember the way that we were treated. You are ALL Jessie's Angels. Thank You.

I want to give all of you a little perspective of how big the send-off was, and how important it was to so many other people. We have received emails from all over, telling us how the story touched their lives. People told us that their "faith in humanity had been restored", and that "they had found God again". People were genuinely touched by all of you in Aledo on a very broad scale.

We have heard from people who saw the story in San Antonio and on the West Coast, and today, I got a call from someone who said that they saw the story on CNN several times!! This means that people all over the WORLD have seen the story of how our little Texas community showed a love beyond belief for a sick little girl. Aledo's own. I hope that this makes you all as proud as it makes me, because YOU, Jessie's Angels, are the ones who did it. By your outpouring of Love, you touched the WHOLE WORLD!! Isn't that amazing what love, community, and faith in God can accomplish.

We got a call from ABC's Good Morning America show this morning, and they are interested in doing something as well. I'm not sure if anything will happen or not.

I pray that the message that we are able to deliver is guided by God, and that the good messages that were delivered last week are once again propagated so that others are touched.

I also hope that we can communicate the message that there are other kids besides Jessie, that have had hemispherectomies, and there are others waiting to have the surgery. Little Noah at Duke, just endured the surgery a few weeks ago, and Cameron, from North Carolina, last year. Jodie, from Maryland had hers done 15 years ago, and she is about to start college. Kim, from Oklahoma, had hers in 1986, and is about to graduate from college.

We want to communicate that this surgery is a miracle of God and medical science. It is a miracle that a child can have half of their brain removed and then go to college? Not all do this well, but some do. Isn't that exciting and amazing and a cause for celebration!!

Anyway, with that in mind, Kristi has been trying to figure out a way to celebrate these kids, and she has decided to start a scholarship fund in the name of Jessie, that will be awarded yearly to hemispherectomy patients. She has been inspired by the love and generosity of our community, and wants desperately to give back where she can. We are NOT looking for community donations. You have all done enough. What we hope, is that the corporate world will embrace this miracle and support the cause. Who knows if it will happen or not, but after what we have seen in the past few months, ANYTHING IS POSSIBLE!

I started this blog with gratitude and I'll end it in the same manner. Thank you to Jessie's Angels. We will be drawing from this deep well of well wishes, love and prayer throughout the week.

The Halls

A Few More Pictures from the Send-Off

An Update on Noah

I just finished reading the latest entry in Noah's Blog and his mom put up an incredibly encouraging entry. It said, "Noah has taken MANY steps today, with one-person assistance!!! It is WONDERFUL to see."

If you remember, Noah underwent his hemispherectomy on April 16th, so less than a month later, he is doing incredibly well. Please keep Noah in your prayers. His family is so amazing, and gives Kristi and I so much strength to carry on and move forward.

If anyone wants to write a note to Noah and/or his family, you can do it on his blog at http://noahsblog.supportnoah.com/user/categories.aspxor see his website athttp://www.supportnoah.com/

God Bless,

Cris

Mayor Kit Marshall Declares May 9th as Jessie's Day!!

Jessie's Send-Off was something that was beyond words and beyond anything that you would ever believe....unless you saw it. I still search for the words to describe what happened, and until I can, we'll just have to share pictures. I saw a wonderful, healthy, vibrant community come together to let Jessie know that she was special, and that they all loved her. Every time that I think about it, I get teary-eyed. Every time that I talk about it with others, we all get choked-up. It was beautiful.

Mayor Kit Marshall Declared the Day as "Jessie's Day", the dallas cowboys cheerleaders showered her with attention, and she was the Grand Marshall in a giant pink parade. Every tree that we passed had a pink ribbon tied to it, I think, and most trees had lots of pink ribbons. Jessie was in the hottest ride in town and was the happiest girl in town. We are so grateful to the community for their love for our girl. Thanks to All of Jessie's Angels in Aledo.

-Cris

Jessie's Carnival Pictures

Jessie's Carnival was Incredible !!

OK, sorry that I haven't written about Jessie's Carnival yet. Every time that I sit down to write, I hear "Dad?", and there goes the opportunity. You all know what I'm talking about. But I'm definitely going to get it done this time.

Anyway, the carnival.....hold on... someone just called my name....

OK, I'm back. Jessie's Carnival was AWESOME !! Michelle Bartee did such an amazing job of planning and getting sponsors and volunteers to help. They had cake walks and carnival games and bounce houses, and yes, a pink castle bounce house. There was a clown, and face painting and car washing. I even got to help wash a few cars. There was a "Lemonade Stand" and a silent auction with lots of cool stuff to bid on. It was just amazing.

All of the volunteers were incredible too. Caren Jennings was there, and Michelle's daughters Stephanie and Niki, and lots of Cracker Barrel staff. The mayor of Weatherford was there, along with channel 11 and Heather McClelland of Wood Bend Photography was there taking pictures. We saw so many of our friends from Aledo. It was just a wonderful time and an amazing effort.

Oh yeah, and Joey from the Aledo lemonade stand was there along with his helpers Avery and Jane Ann. These kids are celebrities as far as I'm concerned and I was more honored to see them than the mayor. No offense Mayor.

Also, a neat story about the DJ that I need to share with you before I end for the night.

Michelle didn't have a DJ for the event, but planned on keeping things going with her own voice and enthusiasm....which would have been great. However, the DJ that ended up doing the carnival was eating breakfast on Saturday morning at Cracker Barrel and just asked if they needed a DJ for the carnival. He ended up doing it all day Saturday and most of Sunday, and he was a bright, professional touch to an already amazing event.

Also, if some of you remember, he was using this huge ancient dictionary to keep something in place near his speakers, etc... and some woman approached him and wanted to buy it. For some reason he said he was saving money for a mission trip he was going on this summer, and she gave him $100.00 for it. She had to have it for her husband. So, he was blessed too. He was in the right place, in the right time. Coincidence? He was directed to go to the Cracker Barrel for breakfast, and he asked- and he served all day Saturday - 12 hours!- and then Sunday for about 5 hours. So selfless and giving . And he was taken care of too - Cracker Barrel provided him with meals and he was given $100.00 out of nowhere. WOW - it was neat to see the blessings that came to him this weekend for giving of his talents for Jessie's carnival. (These are Caren's words, thanks Caren, well written.)

God is working in amazing ways in Parker County. We are so blessed to have people like Michelle in our world. Michelle, if you are reading this, there is no way to thank you with words for what you have done for our family. You are a blessing to us and a blessing to Parker County. Thank You for your love.

Watch for carnival pictures and a list of carnival sponsors coming soon. God Bless all of you who are reading Jessie's story.

When Seizures are a Good Thing

05/06/2008

Last night, about 6:00PM, Jessie had a bad Complex Partial Seizure, that wouldn't stop. We should have known something was up, when she didn't want to wake up that morning and I had to let her sleep extra before taking her to school. Plus on Friday night, she had 7 small seizures; the most that we have seen in such a short time period. So, we had to administer Diastat to stop the seizure, and luckily it did stop. No ambulance was needed. She slept hard for an hour or so, and then woke up like nothing happened. The great thing about these, is that she doesn't know that the seizures happened. This morning, she was back to herself again and ready to go to school. What an amazing soul she is.

It has been over a month since she has had a bad seizure, and even her mild ones have been few and far between. She had done pretty well lately, except for the constant twitching in her hand and eyes, which IS seizure activity. So, in line with the nature of this cruel disease, we were beginning to think things like "maybe she is getting better" or "maybe we won't have to do surgery" or "maybe we're doing the wrong thing". This week was a good reminder that things are still progressing, and we definitely are making the right decision, and a hemispherectomy IS the best thing for Jessie long-term quality of life.

So, although Kristi and I despise seizures, and although we now quietly refer to Rasmussen's Encephalitis as "The Monster" (not in front of the kids), we are somewhat relieved to see the bad monster coming in to smash-up Jessie's world for a while. I know that sounds cruel on the surface. And I guess it is a bit selfish on our part. But think about it....With each seizure, comes comfort for us in knowing that we are making the right decision. We are giving Dr. Carson permission to permanently disable our daughter both mentally and physically yet the Monster has to be stopped or it will ultimately win. So we are giving Dr. Carson permission to kill the monster and give Jessie peace from seizures.

I'm sure that the monster will mess with our minds some more before surgery and torment our sweet little girl, but on June 11th, it will be over. We'll pick up the pieces and come home.

New River Fellowship

05/04/2008

Today, our family made a commitment that we should have made a long time ago. We became members of the New River Fellowship over near Hudson Oaks. We have been attending for a while now, but never could seem to find the time to attend their Visions 101 class and make the commitment. There was always some excuse. A classic case of screwed up priorities, but we're working on straighten out those priorities.

"So, what does that have to do with Jessie?", I hear you ask. "This is Jessie's Blog."

Yes indeed you are right, but this has everything to do with Jessie, and let me explain. First of all, I'm NOT going to turn this into a religious blog, because there are so many people out there that can deliver a more POWERFUL lesson about our Heavenly Father, than I ever could. I'll leave those blogs to the graduates of seminary and other experts in that area. But let me at least testify.

And as things progress, I feel that our family's testimony will be even more intertwined with God's work than I ever imagined when I started writing. It is impossible to avoid...so expect some more praises to God and giving credit where credit is due.

On the way home tonight, we drove through Aledo to look at the businesses that blessed Jessie and our family by advertising her Carnival at Cracker Barrel in Weatherford on their Marquees. (Which by the way was an amazing event that I will write about later.) There were several, but one that really stuck in our minds was the Sonic sign. Sonic was advertising Cracker Barrel. For this one weekend, they were effectively saying "Visit Jessie's Carnival and go eat at Cracker Barrel". It took me a while to realize how huge that is for a business to do this for Jessie. But it is huge!! They put aside competition for a weekend to help out our family.

We have a bunch of business to thank, and that is coming later too, but tonight, I want to write about something that came together for our family tonight. It involved church, and our family, and Jessie, and these businesses, and the community, and our neighbors, and our friends and the school.

Driving through Aledo, Josh (8) asked "Why are we here?" Of course, he meant literally, why are we driving around in Aledo, but Kristi answered in the philosophical sense. She replied, "We learned at church today that we are here and were created for God's pleasure." That is our purpose on earth. She followed with "and what better way to please God than to show all people the unconditional love that He shows us."

Josh then replied, "Well, how can we do that?" And Kristi began to tell the whole family that we have the best "teachers of love" in the world right here in our own community and family. The people at New River Fellowship who have showed us love since the first day we walked in the door. Our extended family who have supported us through Jessie's entire battle with unconditional and caring love. The community businesses who have put aside competition to support us and love us. Our wonderful community, neighbors, and friends who have gone WAY out of their way to show us love. And our school, WOW, they could teach a semester course on love. Collectively, our community has taught us how to love.

So, how hard can it be. All we have to do, is follow the example that so many people have shown us in the past few months, and we will be on our way to pleasing God.

We have learned so much from all of you in our community. We owe you more love than we will ever be able to repay. We will be in your debt and at your service forever. Thank You for the lesson. - Cris

Jessie's Carnival - Sponsored by Cracker Barrel

Questions : Please contact Caren Jennings - 817-308-8654 or JessiesCarnival@uwmail.comor Michele Bartee at Cracker Barrel at 817-598-9070
Special Thanks to Michelle Bartee, Caren Jennings, and Robin Seay!