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.
Cris

49 comments:

Anonymous said...

How AWESOME!!!! I can see why you are praising the Lord!! What wonderful news. I am crying right along with everyone else at how good God is. Have a great time with no hair, Cris, AND in Jessie's own room. What a great day. Now get some rest. Thanks so much for all the time you spend updating all who are waiting every day.
J Jones in AZ

Anonymous said...

Jessie,

As someone who is somewhat follically challenged myself, I take my hat off to you. About two weeks back, I had my hair cut really short (almost bald) and now it is almost 1/8" long in parts. I can also see your mom doing it. It would be no surprise to me. Anyway, take care honey and we will see you soon hopefully! God bless you!

Eddie S. (and Tina and Lucy)

Anonymous said...

I want to share the following prayer with you in hopes that it gives you the comfort and peace it has always given me and my family. May God continue to Bless the Hall family.

Angel of God, our Guardian dear
To whom God's love entrust us near
Ever this night, be at our side,
To light, to guard, to rule, and guide.

jazzy102707@yahoo.com said...

i'm so glad that she out of picu in to a room now. that show you that god is so mighty ,that nothing is too much for him. my family and friends are praying everyday for you jessie . That you will do amazing thing that shock the dr's and you have so many new friends that you cannot image , that you are love bye so many. jessie mom and dad you have the most wonderful young lady there and she will be just fine and please keep us inform .you have touch so many hearts , sweet dreams

Anonymous said...

jessie,
you look beautiful! you are in our hearts and prayers every day.
love,
david,marlina,heath and holden davis

Anonymous said...

So glad to hear such great things about Jessie today!
BALD is Beautiful! I know how Kristi feels, I planned on shaving mine when Tyler lost his hair! He said "PLEASE NO! Mom that would be too weird!"
Jessie has the most beautiful crooked Smile in the world! We pray for more great days and peace for all of you!
Jessie...YOU GO GIRL!
All Our Love
The Jones Family
Randy, Ann Marie, Tyler & Ryder
Aledo, Tx

Anonymous said...

PRAISE GOD!!! Jessie looks so beautiful. We are part of your NRF Family that you do not know. Some of us have met Jessie and your sons in KIDZ Church. Our family has been following your journey and checking in, and most importantly praying everyday. Something cool happened today. When we were in Fort Worth (we live in Weatherford) we saw an SUV with very big writing all pinked up saying PRAY FOR JESSIE!! on 3 sides. I wanted to honk and show them our flyer of Jessie we keep on the dash and our pink bracelets. Since we were on the highway I did not. Please know we are continually lifting Jessie and your whole family up before the throne of God. We have her adorable parade picture and flyers up on our fridge and dash to constantly remind us. We are praying, believing and expecting to see awesome miracles. (Pslm 27:13) "I am still confident of this: I will see the goodness of the Lord in the land of the living."

gracie1956 said...

If the watery liquids are causing Jessie to choke ask the nurses about a thickener that is used just for that purpose. It works really well and I bet they have it there. You can add as much or as little as is needed and I don't think it has a taste. I have been reading your blog everyday and Jessie and you all are in my prayers. I know what it is like to spend that much time at the hospital. My daughter has muscular dystrophy. May God hold you all in His hand.

Anonymous said...

What GREAT news!!! I hope you guys can sleep peacefully tonight knowing you did the right thing!! Jessie looks AMAZING! I want to share with you something that I thought was very cool! The other day I took my girls and a friend to the mall. The girls got caught up in one of those games that are filled with stuffed animals and it has this arm that comes down and tries to grab one..anyway...The hole that they drop out of got jammed by 2 that had dropped by them but never fell all the way through.. So.. I call the number on the game (being the good mom that I am- ha ha) to tell them.. The lady asked where I lived and I told her Aledo Texas. She right away says,"how's little Jessie doing? We've been following her story and praying for her here!.." That seemed like a long story I know..but it was worth the wait, huh? God bless the Hall family!! Aledo loves Jessie!!

Anonymous said...

Tonight I woke up and couldn't go back to bed without checking on our Hall Family. What a winderful blog! Jessie's smile is priceless. Again, thank you for sharing with the world your walk through this nightmare and how your faith helps us all through it. It is so nice to see such a close, strong, and loving family. All of our love and prayers, The Lawley Family

krista yambo said...

That is so wonderful, the healing and the rest for you guys and your daughter is very important and your own room is much much better, we were releived, but was still difficult because gabby is devlopmentally dealyed and she didn't understand why she couldn't walk or get up and that why her leg and arm didn't work...I was wondering if jessie was having any temps, just wondering because we went through almost a month of neuro temps, if you have the time to inquire. The part of deciding for the surgery was very horrible for us and we were told the year earlier that they were going to end up doing it so it was a scary thing to think about every day for a year, I never cried so much in my life last year, but after having so long to think of having to do the surgery we came to a thought of that the docs really understood what they were doing and we just kind of put the descision in gods hands and the physicians involved and that the descision to have the surgery whatever happened, we tried to save gabby's life and if we did nothing it would just be the worse, so its like what do you do? never a decision I would ever wish on anybody but you do what you have to do, and that is what you did made the descision to improve and save jessies life for the better. we pray for no more seizures and a strong rehabilitation for jessie, because the rehab is very tiring, but to see jessie to walk and gain function back is the best, and the crooked smile I think is the cutest, gabby still does it mildly but I think it gives more her personality a boost...stay strong and much love from rick krista and gabzilla

Anonymous said...

We are so glad to see Jessie's personality starting to show through after surgery. She is truelly a very special girl! Be patient with the swallowing. It will get better with time. My mother-in-law had spinal cord damage last year after a fall and after several weeks in ICU had the same challenge and it just took a little time to get the hang of it again.

Hang in there! All of you are so brave!!!!

Sherame, Shane, Ryan, Caden and Chase Anderson

Anonymous said...

I check your blog as soon as I get up in the morning (and several times during the day) to check on little Jessie and your family. What a wonderful surprise - Jessie's beautiful smile!!! Absolutely gorgeous!!!! Tears of joy are running down my face to hear that you have had a terrific day. One of my many prayers for you has been for peace of mind, and I am so glad that you were able to get that with Jessie's diagnosis. Cris and Kristi, I am amazed at your strength. Jessie is so lucky to have you as her parents and cheerleaders. Jessie, you go sweet girl! Aledo is so proud of you and can't wait for you to come home! God is good all the time! May God bless you and keep you today. May he shine his light upon you and be gracious to you. May he look at you with favor and give you peace.
Love from Aledo

Anonymous said...

Ok, this one gave me goose bumbs...through the whole blog!!! YAY JESSIE!! You need to put a side by side father-daughter BALD pic up:) I bet Jessie adores you for shaving your head too! Thanks for ALL the updates and I will continue to pray for your beautiful family and that AMAZING little girl!!
Kara,
Ft. Worth, TX

kathy said...

Amen, Amen!

Anonymous said...

I am so happy to hear that Jessie is eating and drinking liquids. Being an occupational therapist who has worked in rehab hospitals with head trauma patients and within the school system with severely delayed skills including feeding and drinking I think it would be a good idea to have the speech department evaluate her swollowing and make proper recommendations regarding the size of the bites and the amount of the liquids that should be given so the risk of aspiration is minimized. Thickner is something that can be added to the water to make is more manageable for swollowing problems and it does not have any flavor. Allowing her to take sips one at a time and waiting till she swollows twice before he drinks another sip is another strategy to try. I would make sure also that her head is elevated as much as possible as well. Jessie is truly a miracle in the making and I am so amazed at her progress. I continue to be like everyone else in following the stories and pictures each day. I will be following her rehab progress especially being an OT myself. Take each day as it comes and praise God for that. Glad to see she's out of PICU and into her own room. That will bring so much more peace for all of you.
Take care and try to get some rest yourselves as you can.

Anonymous said...

There's our Jessie... I love the haircut...can't wait to see Cris's.. Out of PICU YAY !!! Jessie we miss you ....know we are thinking about you...love ya'll... susie

Anonymous said...

What a WONDERFUL day Jessie had!!! Her smile is BEAUTIFUL and we know she must be so relieved to be out of the PICU.

Hearing she definitely had (yes HAD) RE must have given you such relief and comfort!

Thanks for the continuous updates! You are so generous to all of us...Jessie's fans!!!

Still sending love and prayers
from Weatherford!!!

Anonymous said...

This blog was perhaps the best one so far--just goes to show what prayer can do! Tears started flowing as soon as I saw that beautiful smile and read that she is out of ICU. Enjoy your privacy and your bond of baldness! God is shining on the Halls!

Love from Aledo,
Traci Cottrell

Anonymous said...

Oh how wonderful. We check on Jessie every day and continue to be amazed at your strength. Max asks daily about Jessie and we talk about her often. You are all continuously in our prayers. What an amazing testament to God's love and strength your whole family is. He is SO GOOD!!! Enjoy your new private digs and keep up the hard work. We're all cheering for you!
Karen, JD, Max, & Emma Davis

Kristin said...

WOW! What an amazing day! I am moved to tears reading the blog today. I know you much have so much relief after such a good day yesterday. I cannot imagine the tremendous load you have carried.

Jessie, you look AMAZINGLY BEAUTIFUL! And your smile...it's priceless! Looking forward to seeing a pic of you and your dad together with your new hip haircuts!

Take care! Praying for more good news today!

Kristin
Grapevine, TX

Anonymous said...

What a sweet picture!!! We are so happy for you. May the lord continue to shine His face on the Hall family.
loves, prayers, & hugs, the morrows

Anonymous said...

What great news. Sounds like Jessie is making great progress. Can't wait to see a picture of two shaved heads together. Her smile is worth a million bucks. We say a prayer for Jessie every night. And we look forward to hearing more good news every morning. Aledo continues to keep you all in our prayers. God Bless.

Anonymous said...

I check on your little girl every morning.. thank you for updating everyone about your precious daughter Jessie. it is sooo very sad that Jessie has to go through this. but she is getting better by the day! it makes me cry to see her but gosh how exciting it is also that your able to see her. Praise GOD...

she is very blessed to have such caring parents as you and Kristi!!
amen...

I'll continue to check on her and pray for her and all your family

Anonymous said...

Sweet Jessie,
What a great smile to see after all of this!! You make our hearts sing and smile along with you! We rejoice that you are eating and getting to see your family on the webcam! We are praying for you everyday and thinking of you! We share how God is healing you with people we talk to. You are so special! We are so thankful that you are in a private room now! Praise God for the healing and steps you are taking to get well! Keep smiling little friend! We love you!

Cris & Kristi,
Oh how we thank God for HIS PEACE in your hearts. Can't wait to see your new "do" Cris! We smiled when we read you cut if all off! :)
Looking forward to hearing more great news about Jessie each day!

Love from Aledo,
The Owen's
The Owen's

Ann Stoermer said...

That smile is precious! I am so glad your day was filled with good news. I have to confess that my eyes are filled with tears right now for you. Thanks for the update. It made my day!!

Take care,

Ann

Anonymous said...

We literally cry tears of JOY with you every day as we check in to see Jessie's progress. Out of PICU so soon...that is WONDERFUL news!! Jessie looks so good and that big smile of hers just shines through!!! May God continue to shower you with His love and blessings. Stay strong!!
Love, The Andringa Family

moon said...

A smile that even touches the heart of God.
I am so happy to see Jessie's improvement.
Thank you for keeping all of us up to date.
And hurry back to Texas... at least you have the haircut for the 100 degree weather you've been missing!

Anonymous said...

I have been following Miss Jessie's since her story on the news. I check everyday just to see her progress. Just last year my family went through with hard choice of putting our child through risky surgery. Thankfully we made the right choice. We know that the power prayers really work. I am so glad to hear Miss Jessie got out picu. Those make the days there much longer. Hang in there and stay strong. And may god bless you.
Sheena
Wylie,TX

Anonymous said...

I have been following Miss Jessie's since her story on the news. I check everyday just to see her progress. Just last year my family went through with hard choice of putting our child through risky surgery. Thankfully we made the right choice. We know that the power prayers really work. I am so glad to hear Miss Jessie got out picu. Those make the days there much longer. Hang in there and stay strong. And may god bless you.
Sheena
Wylie,TX

Moreheads said...

We loved talking to Cris, Kristi and Jessie yesterday! It was wonderful to see Jessie smile when she saw and heard us. She looks great! I am so amazed by how quickly she seems to be recovering after surgery. What a remarkable story!
We'll see you on Skype again soon!
Kathy Morehead

chelsburleson said...

hallelujah! i love jessie's darling smile, and i'm so so grateful that she is out of PICU and has her own, private room. continuous prayers for your family!!
-chels
dallas, tx

Anonymous said...

Jessie- you are just as beautiful being bald as before your hair was cut. Your precious smile is so heartwarming. So what if you have scars? You've been through a mighty battle, little angel, and you most certainly have earned them. Your parents are SO lucky to have you, and you are just as lucky to have them. God bless the whole family, and all their friends in Texas. Continue to keep everyone updated and we are all praying for your continued recovery. Jessie- YOu ROCK!

Anonymous said...

You are so beautiful Jessie! So good to see that smile! I miss you and hope to get to talk to you soon! Cris- I do not have internet at my apartment but I am in the process of trying to get the webcam hooked up to my sister's computer once that happens I will try to contact y'all! I love you Jessie!!! Miss McGaugh

Anonymous said...

Jessie, i love that crooked smile and short hair. So happy to read such good news.
Dave Ali

Anonymous said...

What a beautiful smile!!! God Bless!

Anonymous said...

I have no words. I had heard of Jessie's story eariler in the year, but only began to read the blog last week. I appreciate the work you have done to keep us all up to date. You have a truly wonderful and beautiful family. I will continue to read the updates and my prayers. Love and best wishes to you all.
Denise Harris Dallas Tx

Anonymous said...

We check your blog everyday. What an amazing journey you've been through! You're making great progress, Jessie, and we are praying for you everyday. You have many reasons to praise God!
Deuteronomy 31:8 says, "The LORD himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged."
Kimberly, Ross, Kristen and Kara Tatum

Anonymous said...

Hi. I don't know you guys personally, I'm just a blog reader. I can't even remember how I came across this blog, but I have three almost 6 year olds, a 7 year old and an 8 year old. So, 5 kids all around your sweet Jessies age. Her story and adorable pics just touched my heart and I've been following along since just before her sugery. What an incredible and miraculous story. What a strong and courageous little girl and family. Thank you for sharing this story with us. I pray and will continue to pray for Jessie often! Her adorable little smile in that latest picture is just the perfect portrait of the hand of God at work! Just incredible! May God (Continue to!) Bless you all!

~A mom from NY, Amy

Anonymous said...

What a beautiful picture! We love the crooked smile! She looks so much more like herself again... We're thankful for the diagnosis so your minds can be at peace with the incredibly difficult decision you had to make. So thankful too that you're in a regular room. Rest well and thank you again for the updates and especially that unbelievable picture!
The Brittons
Aledo, TX

Anonymous said...

Jessie, glad to see you are out of the PICU! You look beautiful!
Can't wait until you are back here in Aledo. We all wish you a speedy recovery.
Love to all..
Gary, Nannette, Lyndi #6, Amy, and Chad

Anonymous said...

How AWESOME with the GREAT NEWS,I am so happy to hear how wonderful she is doing each day . Jessie is an ANGEL to all of us and GOD has brought her thru so much and he will keep up the WONDERFUL JOB he has been doing .When i started reading Jesie's blog this evening i had tears in my eyes it seems i have know Jessie but i have never met her .Jessie is AWESOME ANGEL . I am so happy that she has been moved to a regular room now she will be be happy and i know mom and dad are also so happy . I can honestly say to mom and dad you guys did the right move for Jessie .All i can say is God is a wonderful person and he knows how to bring good news .Jessie is a gods blessing to her family and friends and people that don't even know her .No need to rush just take day by day and get all the rest and get well .Jessie you have so many people that love ya and that are praying for you to get well . God Bless . Mom and dad you guys are wonderful parents and i really know you did the right thing for Jessie's health and the hospital and the doctors and the staff at the hospital are wonderful people and they do there best . Get well soon and take day by day and get all the rest and by the way the pictures that are beening posted are also WONDERFUL and AWSOME .kEEP UP THE GOOD WORK .I will be looking forward to more good news , i check Jessie's blog at least 3 or 4 times a day .

God Bless
Claire

Anonymous said...

Fantastic news Cris! We've been following almost daily and please know that you all are in our prayers. I know you both must be extremely relieved that RE was confirmed. I didn't realize you did not know for sure. That had to be tearing you up inside. God bless.

The Dorsett Bunch

grooms family said...

WOW !!!!!! Such wonderful news today -- see-those little steps are starting to get bigger and bigger-- she just needed her REST and now she's ON HER WAY!!!!! GO JESSIE GO GIRL!!! She looks better every picture you post! Aledo seems to be getting pinker everyday --more and more ribbons and signs!! Such a great relief to hear the positive diagnosis-- now it is all rehab-- Jessie will continue to amaze us all-- GOD bless you all and can't wait to see the two baldies in a picture SOON - that may make the cover of Newsweek !! Have a glorious day and tell Jessie we all said hello and give her a big kiss and hug from us !! love, the grooms family

Allie said...

Amazing! Lots of tears reading this one! I am so thrilled that beautiful Jessie is in a regular room and eating- I know that is so hard after surgery. I love the new ‘do, and her incisions look great- I am sure that those will heal beautifully. Kristi and Cris, a final confirmation of RE on the path report…awesome!! I know that was such a relief, and so freeing for you both to hear. How incredible to know, without a doubt, that the difficult decision you had to make was the right one! Those chains are gone. Amazing Grace, how sweet the sound. God is so good. Darling Jessie, sweet dreams tonight. We can’t wait to see you up singing and dancing! And I know it won’t be long!!! Much love to you all.

Allie

Naddie said...

Hello Chris & Kristi,

My name is Natalie White of Baltimore, Maryland and I have been following this story and cannot stop crying....First of all, I thank you for not forgetting who get's all the credit and he is our HEAVENLY FATHER....and HE is AWESOME. Jessie's new pictures show's me that she is still the same little girl before the surgery...she is awesome and that's what's needed!!! GO JESSIE..... Second, BEN CARSON IS GIFTED...and, I just cannot stop crying when I hear his name as well. After reading your letter, hesitation of choosing JHU and your notation of advising us how crucial of a decision it was at that moment, I GIVE GOD THE CREDIT AGAIN, and then not knowing that BEN would actually perform the surgery...WHAT A MIGHTY GOD WE SERVE....I am sure you know what I mean....WOW!!!! Thirdly, my 2 year old was sick w/a fever and conjestion and I called the doctor and said I cannot stay up another night, then I thought of both of you and Jessie and said to myself, what if you had to stay up every night for almost over a year???? It really put things in perspective and gave me something to be grateful about and GOD get's the praise again!!!! I don't even know you guys and I just LOVE YOU as you were my family. And, you are....GOD'S GRACE and PEACE and I am glad you are also keeping her out of the public eye unless it benefits the cause. I WANT A BRACELET, I AM RUNNING OUT OF PINK...Please KIT if you can...My blog is MYJMJTOURS@BLOGSPOT.COM

Anonymous said...

I have been following Jessie's story for a couple of weeks, when I saw it on the news. I am a 30 yr old married, mom of two daughters in Fort Worth.....and I just wanted Jessie to know that I think she is so brave and she has put a lot in perspective for me. After a long day, I check in on Jessie's blog to see the progress and I am over joyed and humbled. I can't wait to see what wonderful news I will hear next.
In my prayers,
Candice

kitykity said...

Wow, I have to catch up, I haven't read in about a week! It is so wonderful to see her sitting up! I certainly would have shaved my head, and Daddy wouldn't have been able to stop me ;) It would have been like a scene out of GI Jane! :D

Amy & John Duty said...

Hi, it's truly wonderful that Jessie is doing so well, and that you had such caring, capable doctors. We hope she continues to do better and better. Our 4-month-old little girl was recently diagnosed, by Dr. Chacon (who we love), with a seizure disorder. Because Dr. Chacon is no longer with Cooks, we're wondering if you happen to know where she's moved on to? Any info would be greatly appreciated.
Again, it is so great that Jessie has been blessed with so much love from above.
Amy & John Duty (johnduty@tx.rr.com)