Monday, June 30, 2008

Picture from Last Nights Ranger's Game - Nolan Ryan

Thanks for the Great pictures Brad and Jada!

That is Nolan Ryan in the middle presenting a pink, framed jersey to Jessie. Of course Jessie isn't there to accept it. The Ladycats are being honored for their State Championship season and accepted the shirt on Jessie's behalf. The jersey reads Jessie, in pink, across the top, and the number 8 was her T-Ball jersey number on Coach Thurman's Sidewinders team.

Thanks Lee Ann for a GREAT picture. -Cris

Field Trip and What My Stinky Brothers Did on their Summer Vacation

OK, say what you wanna say. I know...I've gotten all kinds of attention this summer, but you know what? This summer bites like the shark behind me. I get to have brain surgery and look at what my brothers are getting to do....Humphhhhh !!!

Just kidding, my Dad wrote that stuff. I got to go outside today and go on a field trip to Children's House for an hour. I had lots of fun. Once the guards figured out that I had escaped so they made me come back to KKI. Here are some pictures of my field trip and what my stinky brothers got to do while I'm in the hospital. - Jessie (via Dad)

Nolan Ryan Presentation and Dinner from a Baltimore Family

Jessie is doing well, but she has a Very Tough Week of Rehab ahead of her. Her schedule this week is grueling and she is having a bit of a pity party this morning...I guess that I would be too. We'll let you know how the week goes.


Macey was doing a little better yesterday. Tim said that she was in less pain and that her numbers were looking better. Hopefully we'll see her soon over here at KKI.


For those of you who saw the Rangers vs. Phillies game last night, you may have noticed that the stadium was a bit more Jessie Pink than Ranger's Blue. We'll, last night, the Aledo Ladycats and Jessie were honored at a pre-game ceremony, surrounded by thousands of screaming least that's what it sounded like over the cell phone.

Hall-of-Famer Nolan Ryan presented Jessie with a framed, Texas Rangers jersey, with Jessie's name on the back (#8 of course which was her T-Ball number). The jersey was signed by Mr. Ryan and all of the National Champion ladycats. How unbelievable humbling for us to see our child get so much attention. How do you ever thank the world for such amazing support?


Last night was also special for our family, in that we didn't have to eat Subway, Flamers, or Mama Mia's. (close to the hospital food). A nice family from near Baltimore brought us a beautiful Italian dinner and sat down and ate with us. Jane, Sammy(16), and Nicki(8) Stefanik provided us with a delicious dinner and delightful company. Thanks Guys!! Jane and her girls also brought Jessie a basketful of games last week while she was over at Hopkins.

OK, now the rest of the story. Come to find out, Jane works for the same company as Brian Melven...the nice gentleman who created the website. They had never met before, and now they've been in contact with each other and are trying to get a corporate donation for The Hemispherectomy Foundation. Isn't that Amazing!!! It is such a small world and one guided by such a powerful hand.

Warm Regards and I hope that everyone has a beautiful week. -Cris

Saturday, June 28, 2008

Another Prayer For Macey

Today, Jessie wanted to go over to Johns Hopkins Children's Center to visit Macey and see if she wanted to come over to Kennedy Krieger Institute (KKI) to play. The two hospitals are connected via underground tunnels. So we wheeled Jessie over to Macey's room.

We knew something wasn't right when we got there and Tim and Mickey (Macey's mom and dad) were outside the room with relatives. You could see it in there faces when they saw us that things weren't going so well today. They told us that Macey didn't feel well enough to come play and that she had developed inflammation in her pancreas on top of everything else, so she was in incredible pain.

They are desperately trying to get her over to KKI to put her on Feeding Therapy here, so hopefully that paperwork will go through soon. KKI has a great feeding program.

So, please pray for Macey and her family, That
  • The Inflammation in her pancreas goes down
  • The pain subsides
  • Her digestive system begins working again
  • Her parents be given strength to continue on
  • Macey and her little sister Lilly grow old together


An update on Noah:

Noah, at last word is doing great. He is walking and is a happy 8 year-old kid. His mom said that he said "Mom, I'm better with half a brain than I was with a whole brain!" That's what it's all about Noah. Keep up the good work.

I haven't seen little Darel's parents around the hospital lately, so I guess that the liver transplant recovery went well.

There was a teenage girl who underwent a hemispherectomy yesterday over at Hopkins, and we met her mom. She was so scared. I can't imagine going through this surgery as a teenager. Please say a prayer for her and her mom. We went by ICU to visit today, but we couldn't go in her room to see her.


On a lighter note, I hear that some of you are headed to a Ranger's baseball game tomorrow. That is so exciting that the Ladycats are getting honored and that Jessie gets to be a part of it by proxy. I hear that there may be some pink at the game, so we'll be sure to wear our pink as well. We get to watch the pre-game festivities via a live feed over the internet, so I hope to see all of you tomorrow night. You may not see Jessie, but I promise she'll be watching you!!

I thank God tonight for all of the blessings that have been bestowed upon our family and for all of your support during these difficult times.


Friday, June 27, 2008

Jessie Moved Her ARM ! ! ! ! and Presidential and Congressional Gifts

Today, Jessie Moved Her ARM...on purpose!!! OK, Jessie was sitting on the toilet, and her arm was in front of her. So Kristi, not thinking, told Jessie to move her left arm out of the way....and Jessie did it!!!! We tried again, but got nothing.

We'll take it!!!! That made our day today. Praise God and this blessing today!! It was such a huge boost of hope that we so desperately needed.

Yesterday, Jessie received an INCREDIBLE, once-in-a-lifetime letter from President George W. Bush. I'm not kidding...OUR President!! Of our great country!! The United States of America!!! It was a very personal letter to Jessie from Mr. Bush and the First Lady, and something that Jessie will treasure forever.

Like that wasn't enought, Jessie also received an AMAZING Gift from the Honorable Kay Granger of the U.S. Congress. It was the American Flag that flew over the United States Capitol on June 11th, 2008; the day of Jessie's surgery. The Certificate that came with it read :

"At the request of the Honorable Kay Granger, Member of Congress, this flag was flown in honor of Miss Jessie Hall for her courageous fight and her inspiration to all who know her. Our prayers are with you daily."

WOW!!!!! I'm glad that Jessie is a confirmed Republican.
Also, some of you asked about the Split-Belt Treadmill that Jessie is using at Kennedy Krieger Institute (KKI), so I've attached a link that tells about the research lab and the machine itself.

We so appreciate everyone's orders for prayforjessie gear. All of the proceeds from these sales will go to The Hemispherectomy Foundation. Thank You.

God Bless and have a Great Weekend. - Cris

Thursday, June 26, 2008

Split-Treadmill, Visitors, and a Tentative Release Date

Miss Heather carries Jessie to the new treadmill. Heather is in charge of Jessie's PT, so she concentrates on walking again. She is incredible, just like all the therapists here at KKI.
This new split-treadmill is supposed to help Jessie walk better. Very few hospitals in the world have one, Kennedy Krieger being one of them that does. Jessie's not nearly as excited about this piece of equipment as we are.
Jessie loves the playroom. This is Jessie playing with Macey and Lilly.

We keep this next to Jessie's bed so that she can see her friends and we can remind the nurses how she looked before surgery.
Hey, Kristi's college roommate and her family came for a visit today. It was such a treat to see Maura and her kids.
Al, Lynn, and Jody came for a visit as well. It's always a pleasure to see them.
Jessie continues to make advancements each day, and we thank our father in heaven for these blessings.
Tentative Release Date : 07/17/2008 - 3 weeks and counting!!!!
Please say a prayer for Mrs. Wolf and her family, who cares for other people, even when her health is down.
Please pray for Audrey and her parents. Audrey has a tumor in her adrenal gland. Please pray that it not be malignant.

Blessings to all. Cris

Wednesday, June 25, 2008

Gardens, AFO, Secrets, and The Staple Fairy

Here is a glimpse into Jessie's Day in therapy and an introduction to her Therapists at KKI (Kennedy Krieger Institute)

This is Beth, She is Jessie's Occupational Therapist, and she and Jessie planted a Mirror Flower Garden together today. At the end, Miss Beth let Jessie take one flower back to the room and put it on her window to remember the day and what they had done. What you may not notice, is that Jessie is sitting on a cylinder that rolls slightly, and each time it does, Jessie mus react and balance. Jessie just thinks that she is playing a game and never realizes that she is doing therapy. Miss Beth is great!!

This is Miss Heather. She is Jessie's Physical Therapist, and does many things, but focuses a significant amount of time on walking. Today, Jessie got a new customized AFO brace that helps keep her foot at a 90 degree angle...essential for learning how to walk again. She may wear an AFO for the rest of her life, or she may be able to walk someday without it. The guy working on the wheel chair is Mr. Mike. He's giving Jessie's chair a front-end alignment.

This is a view of Jessie's room at KKI. That's Dr. Carson and Coach Thurman (the bunny) hanging up in the background.

Here is Miss Heather (Dr. Carson's PA), getting ready to remove Jessie's staples. She had 66 in her head, and some of them didn't cooperate as they were being removed. We tried to calm Jessie down by telling her that "The Staple Fairy" would be coming tonight, and that if she let Miss Heather take them out, the Staple Fairy would give her a quarter for each staple removed and waiting under her pillow. I guess that I should have done the math on that one first. Oh well, I guess that $16.50 is not too bad...especially since Mom has to play staple fairy tonight.

Here's Mom and Jessie telling secrets so Dad can't hear. I'm happy that they can share secrets. I hope that they share secrets for the rest of their lives...that's important for moms and daughters.

OK, drum roll please. Monday, Matt cut his hair so that he could look like Jessie, and the picture is finally in. Matt, it looks GREAT!! Jessie is going to feel so good that you sacrificed your hair for her. We're proud of you!!

And Here is the whole crew. Matt, Jake, and Josh climbing rocks in Veedawoo between Laramie and Cheyenne, Wyoming. They still look like they're having a miserable time. Boys!! Mom and Dad love you and we can't wait to see you again soon. We'll be at the Baltimore airport waiting for you on July 1st.

Tuesday, June 24, 2008

A Full Day at Rehab in Kennedy Krieger Institute

Jessie finished her first day in rehab today. She is now in the Kennedy Krieger Institute, which is right across the street from Johns Hopkins Children's Center.

She has a very full day of Occupational Therapy (OT), Physical Therapy (PT), and Speech Therapy, and Neuro Psychological testing. She is exhausted when the day is done.

Sometimes, I don't really see how she will ever walk again. She is just so limp on the left side of her body. It is literally like a noodle, total left hemiplegia. It's not like we weren't expecting that, but you don't really understand it until you pick up that limp body. The same body that WALKED into the operating room 2 weeks ago.

I pray and pray that the left side of her brain will begin taking over some of that function, and rewiring so that she can at least walk again. Being able to move independently is so important to kids.

I look forward to writing positive reports from Kennedy Krieger over the next weeks. Thanks for all the comments, emails, and prayers.

God Bless You. -Cris

Monday, June 23, 2008 - What is this?

We have all been praying for Jessie so hard, and praying for other kids up here at Johns Hopkins Children's Center so diligently, we felt that it was time to make it official and help even MORE kids and their families. Through God's amazing guidance, we hope to touch the lives of many children and their families.

So, lots of Jessie's Angels have been out working their wings off to start the new PrayForJessie website and tonight it is UP!!!!! This website is the precursor to The Hemispherectomy Foundation website and all merchandise sales will go directly to The Hemispherectomy Foundation to help kids like Jessie, who have undergone this radical surgery.

So, it's time to go PINK everyone!!! and to show your support, through Jessie, for all the kids and their families that have gone through this heart wrenching ordeal.

Special thanks to Brian Melven for his talent and hard work for making this website a reality. Brian, you are an amazing person, and I look forward to shaking your hand when we get back to Aledo.

Special thanks also to Caren and John Jennings for all of their hard work in making this happen. These are two amazing people, and if you haven't met them, you should. Selfless and caring beyond words.

And Holly King at Aledo Sports for managing the Merchandising side of things...thank you so much for all of your work.

So, I invite you to go out and browse . Learn more. Visit the Pinkalicious Boutique and find your favorite shirt, buy a bracelet or lots and hand them out to your friends. You will be helping out a family somewhere who is going through, or already going through what Jessie has, with education, life aids, scholarships, and more. You will make a difference!!

God Bless All of you, Jessie's Angels!! Cris

Sunday, June 22, 2008

A Photo Journey through Jessie's Day at Johns Hopkins Children's Center

Here is a look at Jessie's day, today, at Johns Hopkins Children's Center. She spent most of the day in a wheel chair (not bed) and is getting stronger each day. She still has some very low fevers, but this is common with hemispherectomy patients.

So, here is Jessie's day...

Out to the Playdeck on the 3rd floor of the Children's Center for daily activities. Here Mom and Jessie decorate a visor. This is where Jessie met Macey.

I guess decorating visors is tough business!

Dad and Jessie watching Sponge Bob Square Pants.

Gotta start the day of right with a good breakfast.

Ahhhhhh, Chocolate Ice Cream!! It's good to be free...even if it's just in the hospital cafeteria.

Dr. Dad says "Brain checks out fine. Good Work Dr. Carson and Dr. Vining."

Winner of the Blue Ribbon! Best Decorated Wheel Chair on the 4th Floor!

Jessie's friend Macey. Hi Macey!!

Our Savior! This statue is incredible. It is in the very center of The Johns Hopkins Hospital and stands at least 20 feet tall. The hospital was built around this statue. Maybe that's why this hospital is so blessed and has been for so long? Coincidence?

Saturday, June 21, 2008

A Field Trip to the Johns Hopkins Cafeteria

Today was another good day. Honestly, each day that passes is a good day, because we have Jessie with us. She is still very weak, but the fire is know the fire that I'm talking about if you have read much of this blog. We have a long way to go, but Jessie is on her way back.

They removed her feeding tube (Nasal Gastric tube) today. That felt so good for her to get that thing out of her nose. This means that the Doctors believe that she is getting enough nutrition without having to worry about NG feeding. Hooray!!!

Also, they took out the central line in her neck and disconnected the IV in her arm. That means that the doctors think that she is getting plenty of fluids without an IV. They left it in her arm just in case, but Jessie is free of lines. It makes going to the bathroom and moving her around MUCH easier. We have to carry her everywhere and move her by hand anytime that she needs to be moved. Believe me, this isn't an easy job after she put on 20 pounds of steroid weight!!

We are also working with her left arm, and left leg continuously to see if we can get ANY strength and/or movement. Not much yet, but we're still praying. Right now, she has complete hemiplegia on the left side. from her tongue to her toes, it's all limp on the left side. In addition to what Hopkins is doing, we are doing the Hall Family Rehab until we get over to Kennedy Krieger Institute for in-patient rehab.

The highlight of our day, was a visit from Kelly Dawson and her family, including Kelly's mom. Her daughters, Alex, Tarin, Abby, and MacKenzie were with her. They were sweet girls, and very well behaved. The brought some nice gifts for Jessie. We all went down to the Johns Hopkins Hospital Cafeteria for lunch. Jessie's first field trip out in the general public went well, but really wore her out. She got some major stares from those looking at her scars and staples, but we beamed with pride. We were so proud to have her out and her wheel chair was decorated with a pink feather boa!!

What really makes this trip special, though, is the hope that it brought us. Not because Jessie went down and ate with friends, but because Abby Dawson (6) had a hemispherectomy 3 years ago. She walked down with us for lunch and ate with Jessie. She's just a regular little girl, with a slight limp and a brace on her left leg. She smiles and plays and laughs and loves life, and she is missing the right half of her brain. God Blessed us with the gift of hope once again and brought the Dawsons to visit us. Thanks to God and thanks to the Dawson family for taking the time to drive from out-of-state and spend some time with us today.

Little Macey, from next door, came over to play Candy Land with Jessie today. She is such a sweet little girl; soft spoken and well mannered. I prayed over and over today for her and her family. I pray that her body responds to the treatment and her body begins nourishing itself and the color comes to her face and she is healed.

I'm praying for her again tonight. Cris

Friday, June 20, 2008

Jessie's Brothers

There has been so much emphasis on Jessie over the past year, that we tend to forget that we have three other children. Matt (10), Jake(8), and Josh(8) are our other kids, and we love them just a much as Jessie, despite the fact that Jessie gets much more attention. I guess that the sick kid always does.

So, they boys have been on a whirl-wind tour of the US this summer. They started out with my Dad (Cliff - Granddaddy) and stepmom (Gail - Grammy) out at Lake Granbury and then a trip down to San Antonio and finally up to Cheyenne Wyoming, where they dropped off the boys with Kristi's parents in Cheyenne. (Gary - Papa, Nancy - Gramm) They are having an awful time driving tractors, ATVs, and shooting gophers. There supposed to go up in the mountains this weekend. I feel so sorry for them.

They fly over to Baltimore on July 1st for a week to see their little sister. We already miss them so much and are so looking forward to seeing them. They're going to love The Children's House where we are staying. Video Games, toys, preoccupied paradise!

Then they will fly (unaccompanied minor) back to Dallas to be with my Mom (Barbara - Grandma). They are going to be so spoiled by the time we get home, it will take years to get them reprogrammed. Oh, will be a summer that we all remember for the rest of our lives.
Matt decided today that he wanted his head buzzed too in support of Jessie. Matt, we love your long blond hair, but respect what your want to do. We can't wait to see the picture!!

They look so big...and check out the pink "Pray for Jessie" bracelets. They do love their sister.
You guys are all so grown up. Mom and Dad Love you so much and wish that we could be with you right now. You are so important to us, and I hope that you will understand our absense someday.

Tonight, we met a little girl named Macey out in the playdeck. She is also next door to her in the hospital. She is 6, like Jessie and such a sweet little girl. Her intestines quit working, so they have to feed her IV proteins to keep her alive. The terrible part of this, is that the same proteins that keep her fed and alive are destroying her liver. So her mom has to sit and wait for a miracle. Her daughter is in a life-or-death catch 22. Please take some time to pray for Macey and her Mom and Dad.
Also, Heather Wratchford stopped by to visit Jessie. Well, Heather's daughter and son both have been diagnosed with severe seizure disorders, and they are devastated. Please say a prayer for Heather, her kids, and family.
Good Blessings to All,

Thursday, June 19, 2008

A Bit of a Set-Back

Dr. Carson and Dr. Vining planned to move Jessie to Rehab today at Kennedy Krieger Institute, but she had a significant fever, so they decided to keep her until they could figure out what is causing the fever.

There are several possibilities, however, fever is common after this type of surgery.

So we're not sure when Jessie will be headed to Rehab. In the interim, She will doing Occupational Therapy and Physcial Therapy here at Johns Hopkins Children's Center.

On the positive side, Jessie ate and drank very well today and had a nice long wheel chair ride.

I must admit that WJZ-TV Baltimore (CBS) covered today very well, so I'll direct you to their website tonight, and I'll get to bed early tonight. Thanks WJZ for the great coverage and for letting me get a little extra sleep tonight.

Our Love and God's Blessings, Cris

Wednesday, June 18, 2008

Wheel Chair Ride ! and a Tribute to Granny.

Where to begin? So much happens in one day, it is so hard to know where to begin...

First off, my Granny, Quin Hall passed away last night. This is my Dad's mother, and I'm ashamed to say that I don't know her exact age, but I know that it is over 90. Please don't be sad. She had a very long life, and was a dedicated wife to my grandpa for well over 60 years. She raised 3 kids. my Uncle Bobby, my Aunt Marisue, and my Dad, Clifford.

She worked tirelessly at Abilene Nursery over the years, until my Grandpa and she closed it down several years back. She was a sweet lady, and active in her Church of Christ in Abilene. I have some very special memories of spending the night at her house and of Christmas Eves with my cousins, aunts, and uncles.

She will be put to rest at Elmwood Memorial Cemetery in Abilene on Friday, and I'm sad that I won't be there for the services and to pay my respects. Like I said, don't be sad, but rejoice! for she is at peace and with our heavenly father looking down on Jessie and will be watching out for her. Rest in Peace Granny.


OK, as's my bald head. Looking at this picture, I realize that Jessie got the better end of the deal. She has MUCH MORE HAIR than I.

Time for a wheel chair ride!!! Today, the Physical Therapists came by and lifted Jessie out of bed and put her in a wheel chair. She asked for a pink one, but they were all out. Out the door. Look Out World, Here I Come!!!!
After 5 minutes, she was all tuckered out and ready for a nap.

Some Other Happenings:

The Hemisphectomy Foundation and Jessie Hall Hemispherectomy Scholarship (JHHS) for College Age Kids.

We have received our first applicant for the JHHS. This will be awarded to a student who has undergone a hemispherectomy, graduated from high school and gone on to higher learning. The winner will be awarded the scholarship in July.

The Hemispherectomy Foundation paperwork is being drafted by our accounting firm (Shelton, Mead, Shelton) and our attorney (Gary Jordon), and will be in the mail to the IRS soon. The Board has been named and the website is also well on it's way to reality. Thanks Brian.

There is also a special interim website in the works that will be up very soon. You will be able to get pink bracelets, pink shirts and more...all to benefit The Hemispherectomy Foundation.

Thanks Caren, Mikel, Gary, Brian, Holly, and all of Jessie's Angels for all your hard work behind the scenes. You guys are GREAT and really kept things moving forward in Kristi's and my absense. This will be an AMAZING organization and help so many kids across the US who have undergone this miraculous surgery.

We are being approached by a couple of national TV programs for Jessie's story, but Kristi and I are taking things slowly, because we are not at all interested in doing anything that will not help the foundation and the scholarship. Despite all the TV coverage, we are not interested in TV appearances or having Jessie in the spotlight, unless it can help all the Hemi kids out there and there families. If anyone has any advice here, please feel free to comment.

Wow, did this all happen today?

Jessie is resting peacefully tonight, and hopefully she will have another great day tomorrow.

Praise our father in heaven for the miracles that our daughter has shown the world. Amen.


Tuesday, June 17, 2008

Rasmussen's Encephalitis Confirmed in Pathology

There's that crooked grin!!

I wasn't so sure how to title today's blog, because so many GREAT things happened today, so I went with the one thing that touched me the most...the pathology results. I'll get to that in a minute...but first HORRRAYYY !!! Jessie is out of Intensive Care!! The PICU was great, but we are glad to be gone. The regular rooms are so much more private and comfortable and with much less activity.
Jessie is beginning to eat and drink!!! Horray!!! Although, we believe that she has lost some of her muscles that control swallowing, on the left side, so it is very scary for her to swallow, and she chokes sometime. They assure us that this can be overcome in therapy. I believe that she is learning to control this on her own already. She had part of a hot dog today and some mac'n cheese and she did pretty well with it. Watery liquids are the hardest for her.
Jessie got to see some folks back home last night on the webcam. She saw all three of her brother's teachers and their kids. Thanks Mrs. Moorehead, Mrs. Johnson, and Miss Huckabee. She really enjoyed the visit and so did we. What a great way to keep up with our Aledo friends.
Jessie got to talk to her brothers today as well. She smiled and cried. She misses them so much, and so do we.
I had all my hair cut off today. I figured if Jessie had to do it, then so would I. I'm quite handsome with the hairless look, if I do say so myself. I had to beg Kristi to not do it too. She was ready to hit the barber shop with me. I will post a picture of "Mr. Baldy Waldy" as Jessie would say.
Finally, and on a much more serious note, we got the pathology results of Jessie's brain tissue today. It was conclusive for Rasmussen's Encephalitis (RE) and a very severe case of it, especially in the occipital lobe (visual cortex).
You're probably thinking that is pretty insignificant since we already knew that she had RE. True, but Rasmussen's was only confired clinically (MRI, PET, EEG). It cannot be definitively confirmed without a brain tissue sample. We chose not to do a brain biopsy before surgery, because they are so unreliable. Good tissue can be right next to RE tissue, so it is very difficult to confirm even with an open-brain biopsy, not to mention the risk that you incur.
So, we relied on Dr. Chacon's (Cook Children's) and Dr. Vining's (Johns Hopkins) expertise to make the right diagnosis, and we made the hardest decision of our lives. No parent should have to make the decision to remove half of their child's brain. But we did, and today confirmed that we made the RIGHT decision. Do you see what a big deal that is? If the results had come back inconclusive, we would have had to live with that the rest of our lives. How could we live with that? Luckily we don't have to.
I would like to praise God tonight for guiding us through this awful journey and for giving us the peace of mind tonight that we so desperately needed. I would like to thank Him for all of you who have supported us and loved our family so that we could make it through each day.
I pray that the news tonight gives each one of you some peaceful rest tonight.

Monday, June 16, 2008

Jessie Made "Newsweek"

Today Jessie's story was in Newsweek.

We are pleased with the publicity and awareness about the surgery, but we wish that they had mentioned how The Hemispherectomy Foundation and Jessie Hall Hemispherectomy Scholarship will help lots of kids and their families.

Keep watch for website coming online soon to help these kids.

Looking forward to another good day tomorrow. Cris

One Day at a Time ; and a Fund Raiser from Nebraska

Tonight, Jessie remains in the PICU. She had a good day today. A good day means that it was better than yesterday; a few more smiles and she drank a little more, and she looked more alert. We even got a few crooked giggles out of her. Each day that is better, is a blessing from God and from the incredible team of nurses, doctors, and medical workers that take care of her. They are an amazing team.

You should see how Dr. Vining interacts with Jessie. She drew more emotion out of her in a few minutes than we had seen in hours. Jessie started smiling as soon as she heard her voice as she walked through the door. She hadn't even seen her yet. Diana Pillas, who is the out-of-state coordinator and councilor also helped bring Jessie out of her shell. She still has a long way to go, but we'll take it one day at a time.

We had the rest of her hair buzzed off today. It looks so much better now that it is even and she is proud of her GI Joe cut and head piercings. I have to uphold my promise now, and go get my hair buzzed. No pictures of that please...

They may have to give her a little blood tomorrow, because she is a little anemic. We'll see. Orders change as her condition changes. Also it seems that they get feedback from everyone involved in her case. It is so cool to watch how they work. It's quite collaborative.

She doesn't like to drink or eat anything, but we are managing to coax her into a few sips. So tomorrow we need to work on drinking liquids.

Coming Soon : Lots more pink "Pray for Jessie" bracelets. The demand has been outrageous, so the nice folks back home have been working hard to make that happen and help The Hemispherectomy Foundation and Scholarship at the same time. I'll let you know more as I find out.


I also wanted to tell you about a neat event that Kristi's sister, her family, and friends did for Jessie. It was in Lincoln, Nebraska and it was called "Running for Jessie". They all gave up their Saturday to go out and raise money for the Hemispherectomy Foundation and the Jessie Hall Hemispherectomy Scholarship. Thanks Guys!!!!

Jessie's Joggers : L-R: Cyndi, Jordan Ross, Kari Hatcliff, Barb Sieps, Kim Ross, Amanda Noah, Greg, Colton, Adam, Kaci, and Ron Kudron. Not pictured: Brooke Sejkora (couldn't race due to illness)

"We are so inspired by Jessie's recovery so far! We really have so much respect for all of the physicians, nurses and staff at John's Hopkins Hospital- Jessie has truely been touched by many angels there and we all thank them from the bottom of our hearts for making Jessie's miracle happen! Our hearts are soaring! Love, Cyndi"

**Please pray for a little girl named Jill tonight. She has been through so much with Leukemia treatments and has been so brave and strong for years. She is a cute little girl about Jessie's age and you can see the pain in her parents eyes when they talk about her.

God Bless, Cris

Sunday, June 15, 2008

Father's Day Remembered

You know, I can't really recall the first time Jessie smiled at me as a baby. I used to stare at her for hours and hours and I know that at some point she did smile at me. I mean a real smile...not one of those "gas or poop" smiles. I real honest-to-goodness "that's my daddy smile". I just don't remember.

But I know in my heart that I will never, ever forget the Father's day that my sweet, Jessie smiled at me. That was today....and here's what happened. What a beautifully crooked smile.

Holly Killough and her two sons, from Weatherford, Texas stopped by the hospital today, along with Gail Brady. (We had never met them before) They live in the Baltimore area now and brought a dancing, musical flower for Jessie. You know, the kind that plays music and the flower dances around. This one sings "You are My Sunshine", which happens to be a song that I play on the guitar while Jessie sings with me. Anyway, I turned on that silly plant and showed Jessie. Well, Kristi and I got the most precious crooked smile that you can imagine. You see, it's crooked, because the surgery took away the left facial muscles. But what a beautiful smile it was and I will NEVER forget it!!

I hope that we can catch a picture of that smile next time and we can share it with all of you. Jessie's Angels.

I talked to Caren Jennings back home yesterday, and is moving forward quickly. It will be precursor website for website. I can't wait to see the results. I know that many of you are working so hard for this cause, and we thank you along with all the other Hemi kids and their families.

Today, Jessie played with a glove that we put air into. Still not much expression, but she played a little.

Her favorite games were "Whack Daddy in the Face" and "Throw Playdough at the Nurse"!

Kristi tried to get her to drink something and eat some Jello, but she just wasn't up to it. She isn't talking much either. It seems to hurt her to talk and it seems hard for her to bring her thoughts to verbalization. So she uses her hands a lot.

I, using the old "bribe" method told her that I would give her a dollar if she drank some apple juice. She just looked up at me and held up TWO fingers, as if bargaining for a better deal.

Here's nurse Kim. Nurse Pam is with her tonight. They're all great here!!

Please say a big prayer for a little boy named Dane tonight. He's back on the ventilator again for the 3rd time, and just can't seem to get that fluid out of his lungs. His grandma walked back to children's house with us tonight and was upset. You could see it in her eyes, yet she rejoiced in our good day with Jessie, despite her hardship.

Darel, who got his new liver is doing well. Praise God and his infinite power!

Sleep Well.