Rasmussen's Encephalitis and EPC - What it looks like.

http://www.hemifoundation.org

This post, for the most part is not going to be very interesting to most people, except those dealing with, having delt with, or thinking they may be dealing with Rasmussen's Encephalitis. Boy that was a mouthful...

When Jessie's fingers started twitching in November of 2007, Kristi and I were suspecting Rasmussen's, however, it was a second opionion neurologist that first said "Encephalitis".
So I went searching for videos on the internet of EPC, so that I could compare to Jessie's twitching to see if it was similar. There were no videos anywhere of EPC. So Kristi filmed Jessie's hand the day before we left for Johns Hopkins.

This is how it looked. http://www.youtube.com/watch?v=AxIsYmO6D-Q

It had been twitching for 7 months, and honestly, the twitching isn't as bad in this video as it had been. Paresis had set in so bad that the twitching was being replaced by paresis.
Her eyes, mouth, and neck had also began twitching, but I regretably have no video of that except on WJZ.com in Baltimore, and that won't be there forever.

I know that each Rasmussen's case presents differently, but hopefully this will help someone.

Cris

Biggest News Flash Yet!!!

http://www.hemifoundation.org/

Newsflash !!!!

Jessie lost a tooth!! Had her first sleepover!! and will be getting a new AFO brace!!

First things first. Jessie was so proud when she got home from school today. The tooth finally came out. She's been working on that tooth since before surgery. Here are some pictures.

I also can't believe that I forgot to report Jessie's first sleepover last weekend. Well, Jessie has been wanting to have a sleepover for years, because she watches her brothers go to other people's houses all the time for a sleepover, but she could never do it. We were always afraid that she would have a seizure, so we wouldn't let her go.

So, last weekend, she went over to her friend Alexandra's house and had her first sleepover. She was so proud and so were we. Here are the girls getting ready to leave. That is Jessie, and Alexandra and Cassi Grooms.

The final News flash is that Jessie will be getting a new AFO brace for her leg. It appears that she has progressed past the use of her current AFO and needs some type of carbon-base, flexible brace so that she doesn't hyper-extend her knee, which she has been doing the past few days. Hopefully, it will be one like this, or very similar. http://www.allardusa.com/pdf/Egg_Letter.pdf

I hope that everyone has a wonderful holiday weekend!

Cris

Special Dinner and a Check for The Hemispherectomy Foundation!

http://www.hemifoundation.org

Yesterday brought a nice surprise from the Romine family. They brought us a wonderful dinner, but also a check for the Hemispherectomy Foundation. The check was for Peach Juleps sold at the Homecoming celebration and donations from the Weatherford Regional Medical Center employees, plus The Weatherford Regional Medical Center matched the donations. Wow, what marvelous surprise! Thanks Guys!

This is Donnie Romine.
Donnie, is the CEO at Weatherford Regional Medical Center, and an all-around great guy.

This is Donnie and Denise and their youngest daughter. Within the Weatherford Regional Medical Center hospital they have a Healthy Woman program. Denise is the chairperson of the advisory board. The board consists of many Aledo, Weatheford, and East Parker County residents.

Here is a picture of the beautiful table they set for us. It was a delightful meal and good company.

We're still working on the final figure from the Homecoming celebration, but this will be added to the total, and we should have a final total soon. Thanks to everyone for their support of the foundation.

Cris

Jessie's First Day of School

http://www.hemifoundation.org/

Yesterday, Jessie walked int0 school at Stuard Elementary as a proud 1st grader!! Accompanied by her brothers, and with news crews in waiting, Jessie walked down the hall to Mrs. Koch's 1st grade class. Praise God for His magnificent work through all the medical and rehab staff.

When Jessie first got into her class, she seemed very shy and timid and walked slowly to her desk. Needless to say, we were very worried, and it wasn't a fun drive to work or day at work for that matter. We worried all day long, thinking that she just sat there at her desk like a deer in headlights.

Well, when she got home, she was in a GREAT mood and told us all about her day at school, just like any other kid would. It sounded like a good day...but we were still leery. Anyway, so we called her teacher, and she said that Jessie had an AWESOME day, and that she was definitely in the right place (1st Grade). We had thought about holding her back, but now we are so glad that we didn't. She went to regular PE, and regular Recess, and even led her class into the cafeteria, where another news crew was waiting for her.

So when the news aired last night, we actually got to see Jessie at school. She was talking to the camera crew like her old self. It was such a gift to get a candid view into her first day back at school. She didn't have to have an aid follow her around, and she even went down the slide at school...shhhhh....don't tell anyone.

When she got home, she wanted to go swimming before therapy. Then she went for 2 hours of therapy, came home, ate and went to bed. She didn't move all night, until we woke up 45 minutes late this morning because the alarm didn't go off. Time to start it all over again...but I'm not complaining.

God Blessings,

Cris

Jessie's New Bike

http://www.hemifoundation.org/

Good News! Jessie got a rehab bike this past weekend!! It is called an AmTryke, and was provided by the AMBUCS Organization. AMBUCS mission is to create mobility and independence for people with disabilities. "We do this by performing various forms of community service, awarding scholarships to therapists, and providing AmTryke® therapeutic tricycles to individuals who are unable to operate traditional bikes." http://www.ambucs.com/

Dr. Flora and his wife made a personal delivery. They were extremely nice and showed us how to use the bike and make adjustments for Jessie.

Thanks to AMBUCS and Dr. and Mrs. Flora for such an awesome bike!!

Cris

http://www.hemifoundation.org/

Front Page of the Fort Worth Star-Telegram!

http://www.hemifoundation.org/

Jessie made the front page of the Fort Worth Star-Telegram on Friday August 22nd. If you missed it, you can check it out here. http://www.star-telegram.com/388/story/852006.html Jan Jarvis and photographer M.L. Gray did a great job, and gave The Hemispherectomy foundation http://www.hemifoundation.org/ lots of coverage. Check it out if you get a chance.

Coming Soon: Funds Raised for the Hemi Foundation at the Welcome Home Party, plus Jessie's first day of school on Monday!! Horrrrayyy!!!

God Bless!

Cris

Important & Exciting Announcement !!

Kristi, Jessie, and I were given a unique opportunity to appear on a national daytime TV show called the doctors. This show is a BIG Deal, and will be seen by millions of people all over the USA and world.

We discussed this with our family, and prayed about it, and decided that we would be on the show if they agreed to help us with education and awareness of Rasmussen's Encephalitis, Seizures, and Hemispherectomy Surgery. They also agreed to let us promote The Hemispherectomy Foundation. They actually did this for us.

Of course we haven't seen the final product yet, but it appears to be an incredible show. The producers were kind, compassionate, and human. We were given two segments on the show, so chances are we will be on air for about 15 minutes. Jessie was a little camera shy, because there was a large studio audience during taping.

We are so excited for what this will do for Awareness, Education, and promotion for The Hemispherectomy Foundation and for the disease and surgery that so deeply affected our lives and so many other family's lives.

Check Out the promo on http://www.thedoctorstv.com/ .

The show premiers on September 8th, but I'm not sure what day Jessie will be on. I'll post the date and time when I find out. Set your DVRs!

Have a great weekend!!

Cris

What a Homecoming Celebration!!!

http://www.hemifoundation.org/

What a wonderful celebration last night in Aledo! For those of you who were there, It was so nice to see you. For those that we met for the first time, it was a pleasure. I was so proud walking around seeing what our community was all about. The bands were all spectacular (The J Walkers even did a "Hanna Montana" song for Jessie) Thanks Guys, and thanks to Daze Off, Heredity, and Red Tape Window. Also, the sponsors were amazing. I can't tell you how much this meant to our family.

The most important part of last night, for our family, was seeing so many people out in support of The Hemispherectomy Foundation http://www.hemifoundation.org/ . It is like Aledo has adopted the foundation as their own. We are so humbled to see so many giving people that live right here in our community. God Bless All of You!!

Thanks Caren and John Jennings for all of your work for the Foundation. You are truly God's gift to these children and their families. We will never be able to thank you enough for your dedication to The Hemispherectomy Foundation.







Also, a special thanks to our sponsors! Our Church New River Fellowship. (Please forgive me if I have left anyone out) Mrs. Baird's Bakery and BIMBO Breads, Fort Worth Custom Pools, Weatherford Regional Medical Center, Aledo Sports, Ridgemar Mall, Pressman Printing, Aledo Fire Department, Parker County Today, Sleep Number by Select Comfort, Galligaskin's, Plains Capital Bank The Community News, Jewell Auto, and of course our clown Knothead Jr.

Here are some pictures from the night. I hope that everyone had a good time. Many people have asked when I'm going to start writing more about Jessie again. Well, I promise, that is coming as Jessie progresses through rehabilitation, I'll try to write less about this kind of thing, and more about Jessie.

However, I do have a VERY IMPORTANT and EXCITING announcement to make, but I'll save that for the next post. God Blessing to each one of you for reading this blog and supporting and praying for Jessie's continued recovery.

Cris

Homecoming Celebration!

Update: Mrs. Bairds is hosting Jessie's big Homecoming Celebration. They are taking time from their busy 100 year celebration to honor Jessie. **See Details of Celebration Below!!
Chopped Beef Sandwiches, chips and drink - 4.00
Hot links, chips and drink - 3.00
hot dog, chips and drink - 2.00
**All Proceeds go to The Hemispherectomy Foundation (http://www.hemifoundation.org)


For a Larger PDF (Adobe) Image, Click http://www.prayforjessie.org/HomecomingAd.pdf

If you don't have your Pray For Jessie (Hemispherectomy Foundation) shirt or bracelet yet, don't worry, there will be booth full of them at the party. New graphics, and new shirts, including golf shirts and Cammo!! All Sales go to The Hemispherectomy Foundation http://www.hemifoundation.org/

Chance is Breathing on His Own!!

http://www.hemifoundation.org

Chance is breathing on his own and doing much better. He is out of Intensive Care! Thanks to everyone for their prayers for Chance. Praise to God !

A Prayer for Chance

Please remember to say a prayer for Chance. Chance had a Hemisphrectomy on Wednesday at Johns Hopkins and is still not breathing on his own. Please join me in praying for one VERY specific thing...that Chance begins breathing on his own, so that they can remove the vent machine. http://chancedorman.blogspot.com/

PT, OT and HT (Home Therapy)

http://www.hemifoundation.org/

Here are a few pictures of how Jessie is enjoying her Home Therapy...or playing.

An update on the Saebo Stretch Arm splint. It is working pretty well, but a little harder to adjust than the one that was cast for her at KKI. We're still trying to figure out all this AFOs, splint, etc..etc.. to get the best results for Jessie. Please feel free to post comments or email suggestions for those of you with experience.

BTW, I took an Adderall today to see what the effects would be on her. OMG!! I weight over 200lbs, and I felt like I drank 20 cups of coffee...I can't imagine what that would do to her at 50lbs. And it did NOT help my concentration and focus. I couldn't focus on ANYTHING! We are watching her closely to see how she is on the medication...but I'm having my doubts.

OK, before you start slamming me. I know that I shouldn't take medication that is prescribed for someone else. But give me a break...it is my little girl.

It is so great to have Jessie back home. She smiles more and more each day, and recovers more and more each day. It is a miracle to watch and we are so thankful for the results we see each day.

We hope to see all of you on August 16th at 6:00PM at Bearcat Park in Aledo.

Cooling Off in 105 degree Texas Heat !!

Googlie Eyes - Every kid loves goggles in the pool !!

Chewing on a rubber rat ... at least I think it's rubber. It came out of the skimmer! Yuck!!

The watch on her left arm vibrates and beeps every hour to remind her to look at her arm and use it. Hemiplegic (hemiparetic) kids have neglect on one side of their body, and they forget to use that part. Notice the GREAT walking.

What can I say? The girl loves her dog.

Awwwww!!!

This is a very difficult move. She just bent over and picked up a nerf dart....

....to throw at Mommy!!! Ha Ha Ha Haaaaaa!

http://www.hemifoundation.org

There's No Place Like Home. There's No Place Like Home.

http://www.hemifoundation.org/

Exactly two months ago, Kristi and I were packing for the most dreaded trip of our lives. We were leaving for an unfamiliar city, in an unfamiliar state, to let doctors remove one-half of our precious little girl's brain.

We hadn't slept well in almost a year. We had been consumed by hospital stays, doctors visits, researching on the Internet, and trying to find anyone to talk to about Jessie's condition. Just days before we left, I sent one final email to the doctors at Cooks and Johns Hopkins to look at one more disease that I had found on the Internet. I knew that the symptoms didn't really fit, but I wanted to be the "knight in shining armor" that saved our daughter from such a terrible fate. I must have seemed so silly to the doctors. That's what dads do.

With all our options exhausted, we packed silently. If it wasn't for our faith in God, and for the wonderful community that we live in; If is wasn't for our family, and friends, and church, and school, and people that we didn't even know...if it wasn't for many of you reading this blog, we couldn't have boarded that plane on June 8th.

Imagine our surprise to wake up on the 8th to find a firetruck outside our house, ready to escort us to the airport! And to find our friends waiting outside our house and along the side of the road as we left town. It was like you all knew that we needed help getting to Baltimore, because we couldn't do it on our own.

At the time, only Kristi and I knew that Jessie's disease could only be confirmed by brain samples that would be removed during surgery. Only Kristi and I knew that Rasmussen's was a clinical diagnosis, and it could only be confirmed after the damage was done surgically., and it was too late to turn back.

Our burden was lifted by all of you at Jessie's Pink Day, and the Big Pink Send Off before school was out, and by Kristi's Birthday Surprise, and by the Cracker Barrel Carnival and by all of Jessie's Angels. We were carried through the hard times by well wishers and such caring people...most of whom we had never met.

Well, we made it to the airport and then to Johns Hopkins where Dr. Carson removed half of Jessie's brain. Dr. Vining told us a week later that the results from the lab were in, and Jessie did indeed have a very bad case of Rasmussen's Encephalitis. We had made the right decision.

So Jessie went on to Rehab at Kennedy Krieger Institute, and then to Cook Children's Hospital for more rehab, where you were all with us physically, on Skype, or in spirit. You all carried us through more tough times, while God carried ALL of us.

Now, I sit next to Jessie's bed as she sleeps. It is her last night in the hospital. She is going home tomorrow. She can walk, and talk, and laugh, and smile, and even tell jokes. She will walk out of Cooks Children's Hospital tomorrow with only half of a brain, but the same little girl that we left with 2 months ago. Praise God!

As I write this blog entry, there is another child in Baltimore who had a hemispherectomy today! His name is Chance, and he is in the Pediatric Intensive Care Unit right now. His surgery is complete, but his parents are sitting by his bead with fears that few will ever know. They made the decision to remove half of their child's brain in hopes that he will lead a more normal life.

The main difference between Chance and Jessie, is that Chance has a different kind of support. This morning, Chance's parents had a member of The Hemispherectomy Foundation waiting with them in the surgical waiting room. Jane, who is one of our Angels in Baltimore, sat with the family, and brought them food and was there to comfort them as they went through the most difficult day of their lives. She is there to serve them and help carry them, like all of you did for us.

Jessie has inspired so many people. She inspired a new foundation dedicated to children and their families who face Hemispherectomy Surgery. Only Jessie could take such a negative thing and inspire an organization that will help many kids and their families for an eternity, or at least until a cure can be found for these horrific diseases. She is the inspiration behind The Hemispherctomy Foundation. http://www.hemifoundation.org/ .

Many of you are now taking part in this foundation as well, and I look forward to watching Jessie grow and the foundation grow with her! I look forward to working with many of you in turning the organization into something that we can really be proud of.

I'll see many of you on August 16th at 6:00PM at Bearcat Park in Aledo. There are no thanks enough to express how Kristi and I feel. For those of you that I will never meet. Thank You too for your comments on this blog and for the cards and well wishes. They meant so much to our family.

I plan to keep writing the blog throughout Jessie's rehab, however, I don't think that it will compare to brain surgery....

God Bless You All, Jessie's Angels !!

Cris

New Medicines and Rebhab Rules

http://www.hemifoundation.org/

OK, this post is mainly for parents that are following the blog whose kids have gone through a hemispherectomy, or who will be going through a hemispherectomy. I'm going to talk a little bit about some medications that the Rehab Neurologist, Dr. Acosta, wants to try.

The first drug is Botox. Yes, the same stuff that people use to get rid of wrinkles. It is a poison, that if given in very slight doses, will relax muscles. In Jessie's case, her thumb and fingers in her affected hand (left) are very tight, and when you try to straighten them out, they quickly tighten even more. This is called "spasticity". Spacticity, doesn't mean that her hand is shaking uncontrollable. In fact it is the opposite. Dr. Acosta believes that Jessie's best chance of getting any movement back in that hand, is to relax the muscles in one area of the thumb and fingers, so she can get more out of rehab. Here is an article that agrees with him. http://www.medicalnewstoday.com/articles/32812.php

Also, the rule of thumb in neuro-rehab, is that you get the most recovery in the first year after injury (Jessie's is an injury, it was just inflicted on purpose). So, we've already used 1/6th of our time (2 months out of 12). Time is going fast, so we want to do as much as we can quickly.

Maybe if Dr. Acosta has some left, he can take care of some of my wrinkles. :-)

The next medication that he wants to try is Adderall. It is a stimulant and used to help improve focus and attention. Jessie was having problems with that due to Rasmussen's Encephalitis before surgery, and it continues after surgery. That makes sense, because the disease was destroying that region of her brain before surgery, and now it isn't there at all. Attention and focus are usually handled by the right, frontal lobe.

So Jessie has been put on 5mg of Adderall, with the hopes that it will improve focus and attention. Dr. Acosta feels that using this "mental performance enhancing" drug early in rehab gives Jessie the chance to have a better mental rehabilitation. Although he has remarked several time how incredible her rehab is going already.

Here is a link to some info on Adderall. http://pediatrics.about.com/cs/adhd/a/msp_adderall.htm

So, what are the downsides? Well, the FDA has issued a warning that Botox can cause respiratory distress if it goes systemic. So, the use of Botox is not without risks. Dr. Acosta, however, feels that the risk is worth what we may get in return for long-term quality of life.

I talked to the therapist up at KKI, and they also use Botox for the same type of results. Dr. Vining's office really had not comment as they are mostly on the pre-surgical side of Neurology, and not so much on the rehab side.

The risks of using Adderall, is that it is an amephetamine type stimulant, so there are some addictive properties. Dr. Acosta, said that it isn't addictive, and that she can even take weekend "vacations" from the drug. It is really just to help her focus and allow her brain to rehab faster.

Over the next few months, I will blog my objective evaluation of these drugs, and hopefully log data that will help others make an informed decision. Although, anything I write is NOT medical advice, but my opinions only.

God Bless,

Cris

http://www.hemifoundation.org/

A Special Outing

8/3/2008

Today was a very special day for Jessie and our family . . . she was allowed to go home for 6 hours today! It was so good to see Jessie at home - it's hard to believe that she hasn't been home since June 8. Jessie had a set of therapy goals for this trip and we feel that she met them all and more. She navigated very well and did a great job scanning to the left so she wouldn't bump into things. She even had some pool therapy - she wanted so badly to 'dive under' but Daddy wouldn't let her due to her open incision. Jessie is going to need a lot of supervision over the next few months - someone needs to be in contact with her gait belt at all times for safety. . . but it won't be long before she will be stronger and can have more freedom! The count down has started - only 4 days until she gets to come home for good. We are all so excited!

1 year tomorrow, Jessie started this crazy roller coaster ride with her first seizure. Jessie has demonstrated great character and strength for a 5/6 year old this past year. We are very proud of her. She still has a long road ahead but all the badness is behind us now and we are looking forward to a bright future! Thank you to everyone that have opened their arms and hearts to our family. From Aledo to Baltimore - all over the country really, we have received so much support and many, many prayers . . . your kindness has been overwhelming. We have met so many good friends on this journey . . . you all are true blessings to us.

On that note - here are a few pictures from our wonderful day at home!

Have a great week and stay cool!

Love, Kristi and Cris

Welcome Home Sis!

Come on in! The water's fine!

Sunning with Aunt Michelle

Hang loose cousin Justin!

Busy Day!

8/2/2008

Jessie had a busy day today! She started the day by going on an outing with her physical and occupational therapists to see the movie Wall E and to eat lunch. She got back right at 1:00 with the first of many special visitors awaiting her arrival. Thank you all for your visits! Jessie really enjoyed your company. She also had a few visitors on Friday that helped brighten her day.

Tomorrow Jessie gets to go on a special outing for much of the day - we are all excited and will take lots of pictures!

Have a great weekend!

Kristi and Jessie

Joey from the Lemonade Stand

Jessie with the Romine FamilyLittle Ray and Big Ray

Grandma, Jessie and Dave

Jessie and our good friends the Adamie's and Carlock's

Jessie with Holly and Jillian King