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
Friday, August 29, 2008
Thursday, August 28, 2008
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.
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!
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
Tuesday, August 26, 2008
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
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.
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/
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