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.

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OK, as promised...here'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.

Cris

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.

Cris

Jessie Made "Newsweek"

Today Jessie's story was in Newsweek. http://www.newsweek.com/id/141773

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.

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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

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 prayforjessie.org is moving forward quickly. It will be precursor website for TheHemiFoundation.org 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.