02/21/2008
Thanks to all of the people that have helped us through the past 7 months and we are so sorry that we will continue to need your support and help as we move forward. We are really just at the begining now.
Thanks to our parents and family for helping out with the kids, and the constant communication over the phone and email to keep us from having a nervous breakdown.
Mom, Dad, and Gail. Nancy and Gary. - There are no parents better than all of you.
Cindy - Thanks for all the drug advice
Michelle - Thanks for being there for your big sis.
Erin - You are the best K teacher in the world to keep such a positive attitude through all of this. I know that you truely love Jessie.
Robin - You are the best Principal in the world. I will never forget you trying to get into the ambulance with Jessie to go to the hospital after her bad seizure at school.
Marcia - You are the best Nurse in the world for not being afraid of diastat, and Jessie's continuous visits into your office.
Our Co-Workers for covering for us and providing support, empathy, and encouragement.
Everyone at BNSF, especially Jeff, Bill, Lisa, and Valorie.
Everyone at Alcon, especially Bill, Rebecca, Jim, Paula, Quinn, Terry, John, and Chris.
Our many friends for listening to our constant ramblings as this unfolded.
Chris and Cody
Tim and Dianne
Todd and Susie
Kevin and Lisa
Greg
and many others
Our new friends on the internet who have already bravely gone through this process.
Shelly
Lynn
And especially Jessie who has taught us so many lessons over the past 7 months that we could have never learned on our own.
http://jessiekelley.blogspot.com/
Showing posts with label jessie hall rasmussen seizure encephalitis brain seizure epilepsy epc epilepsia partialis continua johns hopkins vining pillas. Show all posts
Showing posts with label jessie hall rasmussen seizure encephalitis brain seizure epilepsy epc epilepsia partialis continua johns hopkins vining pillas. Show all posts
Saturday, February 23, 2008
Moving Forward with the help of God and our Family and a little Humor
02/21/2008
Dear Family, Friends, and those Concerned for Jessie, I am so sorry that I have had to tell you the news that you have just read in the previous posts. I am almost caught up to the real date, and after that, this will be our primary correspondence with those that are concerned or interested. This way, I will not forget to communicate, and we can communicate how Jessie is doing from anywhere in the world.
From this day forward, We promise to try to stay upbeat and positive for Jessie's sake. Please feel free to put her on prayer lists, light candles, or anything else that you think might help.
Please don't be afraid to call us or come by and visit. Jessie doesn't know what is going on, and she is still a happy little girl, that loves to talk and sing, and will make you laugh over and over again. She is still in school, and doing fine. Please don't run away from her.
We are all confronting this head on. Don't be afraid to ask us if you have a question. Also, children's brains are very elastic, and her left brain will just have to start doing some of the things that her right half had to do before.
Who knows, Johns Hopkins might tell us that it is something else, give her a shot, and she'll be cured forever. Only god knows what is next for Jessie and us. We have a strong family bond and we will get through this.
Dear Family, Friends, and those Concerned for Jessie, I am so sorry that I have had to tell you the news that you have just read in the previous posts. I am almost caught up to the real date, and after that, this will be our primary correspondence with those that are concerned or interested. This way, I will not forget to communicate, and we can communicate how Jessie is doing from anywhere in the world.
From this day forward, We promise to try to stay upbeat and positive for Jessie's sake. Please feel free to put her on prayer lists, light candles, or anything else that you think might help.
Please don't be afraid to call us or come by and visit. Jessie doesn't know what is going on, and she is still a happy little girl, that loves to talk and sing, and will make you laugh over and over again. She is still in school, and doing fine. Please don't run away from her.
We are all confronting this head on. Don't be afraid to ask us if you have a question. Also, children's brains are very elastic, and her left brain will just have to start doing some of the things that her right half had to do before.
Who knows, Johns Hopkins might tell us that it is something else, give her a shot, and she'll be cured forever. Only god knows what is next for Jessie and us. We have a strong family bond and we will get through this.
2nd Opinion - Johns Hopkins Medical Center - Baltimore, Maryland
02/20/2008
Thanks to some advice from our new friend Shelly in North Carolina, and a lot of research, we know that we need to go to Johns Hopkins Medical Center in Baltimore Maryland for a second opinion or at least a diagnosis confirmation. The top Rasmussen's experts in the nation is there at Johns Hopkins. Her name is Dr. Vining
I have picked up the CDs that contain 5 MRIs, 2 PETs, Many minutes of Video EEG, and other information. Our Neurologist wants the second opinion from Johns Hopkins as badly as we do and they have bent over backwards to get the information faxed over and get appointments set up for us in Baltimore.
We will be flying out as soon as everything is arranged. They are all so great at Cooks. We have not had to do a thing to coordinate with Johns Hopkins, and Our doctor has already been in contact with Dr. Vining.
If the diagnosis is concerned by Johns Hopkins, we are not sure where we will have the surgery done.
http://jessiekelley.blogspot.com/
Thanks to some advice from our new friend Shelly in North Carolina, and a lot of research, we know that we need to go to Johns Hopkins Medical Center in Baltimore Maryland for a second opinion or at least a diagnosis confirmation. The top Rasmussen's experts in the nation is there at Johns Hopkins. Her name is Dr. Vining
I have picked up the CDs that contain 5 MRIs, 2 PETs, Many minutes of Video EEG, and other information. Our Neurologist wants the second opinion from Johns Hopkins as badly as we do and they have bent over backwards to get the information faxed over and get appointments set up for us in Baltimore.
We will be flying out as soon as everything is arranged. They are all so great at Cooks. We have not had to do a thing to coordinate with Johns Hopkins, and Our doctor has already been in contact with Dr. Vining.
If the diagnosis is concerned by Johns Hopkins, we are not sure where we will have the surgery done.
http://jessiekelley.blogspot.com/
Rasmussen's Encephalitis
02/20/2008
This morning, Jessie's case was reviewed with the 20 or so Neurologist team at Cooks Children's Hospital in Fort Worth, Texas. They were in agreement that Jessie's clinical picture was consistent with Rasmussen's Encephalitis (RE). http://www.ninds.nih.gov/disorders/rasmussen/rasmussen.htm
They believe that she is in Stage III of RE.
The NeuroPsycologist believes that she is showing signs of cognitive impairment and the physical impairment is obvious.
We have noticed that she has a harder time finding words these days.
The PET scan shows reds and yellows on the left side (good sugar uptake), while the back-half of the right side shows blues and greens indicating poor sugar uptake. The MRI shows that the folds are widening which indicates atrophy.
The Neurologist Team recommends a Right Hemispherectomy (Removal of the entire right half of Jessie's Brain). They believe that it needs to be done urgently in weeks and not months.
Kristi and I, and the Neurology team believe that we need to go to the experts on this disease at Johns Hopkins in Baltimore, Marland for a second opinion.
http://jessiekelley.blogspot.com/
This morning, Jessie's case was reviewed with the 20 or so Neurologist team at Cooks Children's Hospital in Fort Worth, Texas. They were in agreement that Jessie's clinical picture was consistent with Rasmussen's Encephalitis (RE). http://www.ninds.nih.gov/disorders/rasmussen/rasmussen.htm
They believe that she is in Stage III of RE.
The NeuroPsycologist believes that she is showing signs of cognitive impairment and the physical impairment is obvious.
We have noticed that she has a harder time finding words these days.
The PET scan shows reds and yellows on the left side (good sugar uptake), while the back-half of the right side shows blues and greens indicating poor sugar uptake. The MRI shows that the folds are widening which indicates atrophy.
The Neurologist Team recommends a Right Hemispherectomy (Removal of the entire right half of Jessie's Brain). They believe that it needs to be done urgently in weeks and not months.
Kristi and I, and the Neurology team believe that we need to go to the experts on this disease at Johns Hopkins in Baltimore, Marland for a second opinion.
http://jessiekelley.blogspot.com/
Subscribe to:
Posts (Atom)
