I guess it is time to retire Jessie's Blog. I haven't written in years, and she remains seizure free. Jessie is in 5th grade now, and enjoys Choir and Student Council. She makes As and Bs, and still has a wonderful outlook on life, and a fun personality to be around.
I guess we are used to the "New" normal in our lives.
If you are new to the world of Rasmussen's Encephalitis and/or Hemispherectomy, I encourage you to visit http://www.HemiFoundation.org . It exists, like this blog, to help others navigate through this very difficult journey. Without Jessie Hall, none of this would exist.
God Bless!
Friday, December 6, 2013
Monday, April 9, 2012
Seizure Free and Off Tegretol
Quick Blog Note : Today, Jessie was given the go ahead to go completely off of her epilepsy medicine. So by summer, she will no longer be on Tegretol. Horray!!!
Before when she went off of seizure meds, she was still having seizures, but we didn't recognize them a such. We thought that she was having gastric issues. We are fairly confident this time, that she is seizure free and all will work out great.
There is never 100% certainty, but her neurologist at Cook Children's and us are ready to give it a go.
Happy Easter. Cris
Before when she went off of seizure meds, she was still having seizures, but we didn't recognize them a such. We thought that she was having gastric issues. We are fairly confident this time, that she is seizure free and all will work out great.
There is never 100% certainty, but her neurologist at Cook Children's and us are ready to give it a go.
Happy Easter. Cris
Thursday, December 29, 2011
Eight Months Seizure Free and Christmas in Wyoming
The less that I blog, the more that I know that our life is settled into a "new normal". It is not a normal like most of you know, but it is nevertheless a normal that is pleasant, purposeful, and possibly even filled with hope for the future.
Jessie has been seizure free for 8 months now, and with each passing day, comes freedom to move our life forward. This Christmas, we traveled to Wyoming for an amazing week with Kristi's parents. We've been trying to make this trip for three years, but each time, Jessie was in the hospital or not capable of traveling.
But this year, we made it! Horray!!
On the way up, we were able to attend the 2011 Hemi Jam, Concert, benefitting the Hemispherectomy Foundation http://www.HemiFoundation.org . Dan and Saasha Huston did an outstading job on this benefit, bringing in amazing talent and lots of funds to help children impacted by hemispherectomy brain surgery. It was a fun time for all. Gibson Huston was the star of the show with his Elvis act.
Once we made it to Wyoming we were finally able to see The Hemi Lighted Forest of Hope! http://www.hemiforest.com/ . Wow! This was an amazing display of lights, honoring each and every child who has endured Hemispehrectomy. Each brightly lit tree represented a Hemi Child. There was even one for Jessie. If you haven't adopted a tree/child, there is still time to do so at http://www.hemifoundation.org .
Gary and Nancy Kelley (Kristi's parents), did an amazing job with the lights, trains, and hospitality. Gary put up over 90,000 lights, built an indoor train display, and gave hayrides each night since October. Nancy served hot chocolate, and entertained the thousands who came to see the lights and display. A big thanks to Gary and Nancy for all of their hard work.
So, I must say that it was a special trip. Jessie is seizure free, and we finally got to see the Hemi Lighted Forest of Hope! It is all about HOPE!
Merry Christmas and Happy New Year to All !
Cris and Kristi Hall
Jessie has been seizure free for 8 months now, and with each passing day, comes freedom to move our life forward. This Christmas, we traveled to Wyoming for an amazing week with Kristi's parents. We've been trying to make this trip for three years, but each time, Jessie was in the hospital or not capable of traveling.
But this year, we made it! Horray!!
On the way up, we were able to attend the 2011 Hemi Jam, Concert, benefitting the Hemispherectomy Foundation http://www.HemiFoundation.org . Dan and Saasha Huston did an outstading job on this benefit, bringing in amazing talent and lots of funds to help children impacted by hemispherectomy brain surgery. It was a fun time for all. Gibson Huston was the star of the show with his Elvis act.
Once we made it to Wyoming we were finally able to see The Hemi Lighted Forest of Hope! http://www.hemiforest.com/ . Wow! This was an amazing display of lights, honoring each and every child who has endured Hemispehrectomy. Each brightly lit tree represented a Hemi Child. There was even one for Jessie. If you haven't adopted a tree/child, there is still time to do so at http://www.hemifoundation.org .
Gary and Nancy Kelley (Kristi's parents), did an amazing job with the lights, trains, and hospitality. Gary put up over 90,000 lights, built an indoor train display, and gave hayrides each night since October. Nancy served hot chocolate, and entertained the thousands who came to see the lights and display. A big thanks to Gary and Nancy for all of their hard work.
So, I must say that it was a special trip. Jessie is seizure free, and we finally got to see the Hemi Lighted Forest of Hope! It is all about HOPE!
Merry Christmas and Happy New Year to All !
Cris and Kristi Hall
Thursday, June 2, 2011
Hemi Redo Summary - Success
Jessie has been seizure free now for 1 1/2 months, and although we are overjoyed and feel very blessed, we are also grounded and realize that you never know what tomorrow will bring in the world of Epilepsy and our kids.
Nevertheless, I thought that I would share some information about the tissue that was removed and the symptoms that it resolved. I do this in hopes that other kids who may be dealing with the same types of recurring seizurs may benefit.
Jessie's returning seizures were characterized by:
1) Discomfort in the stomach (Aura if you will), followed by...
2) Partial, but not complete loss of cognitive awareness. She could still follow basic commands, nod yes or no. But she obviously wasn't "all there". She never fell to the ground.
3) Ipsilateral (same side as hemispherectomy) eye lid twitching. This was very scary, because we thought that the the seizures were coming from the contralateral good side of her brain. This just goes to show you that the "right controls the left and visa versa" isn't 100% for all tissue.
4) When it was over she heaved a heavy sigh, and wiped her nose.
5) Early on, the EEG was inconclusive. As the seizures progressed, the seizures were present, but they couldn't pinpoint 100% the origination point. Even with PET, SPECT, MRI, and EEG it was still a guess for the 2 Redo surgeries.
Jessie's original Hemispherectomy was anatomical. A word of caution that this doesn't necessarily mean everthing is taken out. It is not black and white, but more of a continuum when conceptualizing the varying degrees of hemispherectomy from "hemisphereotomy" to "Anatomical" and everything between, including "functional".
So the neurosurgeon at Cook Children's, in Jessie's first Re-do, tried to make sure everything was disconnected by retracing the corpus collosum. She was having seizures again soon after her first redo. It was obvious it didn't work. He didn't remove any tissue, because he felt that it was all disconnected.
The second Redo, the one that finally seems to have worked, went after small "button-sized" pieces of tissue in the frontal (Gyrys Rectus), Temporal, and Occipital areas. (I don't say lobes, because there were no lobes left from her original surgery).
The surgeon has decided, because of Jessie, that he plans to remove the Gyrus Rectus from now on in most hemispherectomy cases, especially Rasmussen's kids. This tissue, about the size of a few shirt buttons in the frontal lobe near midline seemed to be causing all of her problems.
Another reason that I want to share this, is that I was on Youtube last night, watching kids with post-hemi seizures, and some presented very similar to Jessie's. Her seizures are also on Youtube to compare. I know all kid's brains are different, but maybe this will help others, especially if the Gyrus Rectus does indeed tend to control ipsilateral eylid twitching.
See everyone in California for the Hemispherectomy Foundation Conference and Family Reunion!
Cris
Nevertheless, I thought that I would share some information about the tissue that was removed and the symptoms that it resolved. I do this in hopes that other kids who may be dealing with the same types of recurring seizurs may benefit.
Jessie's returning seizures were characterized by:
1) Discomfort in the stomach (Aura if you will), followed by...
2) Partial, but not complete loss of cognitive awareness. She could still follow basic commands, nod yes or no. But she obviously wasn't "all there". She never fell to the ground.
3) Ipsilateral (same side as hemispherectomy) eye lid twitching. This was very scary, because we thought that the the seizures were coming from the contralateral good side of her brain. This just goes to show you that the "right controls the left and visa versa" isn't 100% for all tissue.
4) When it was over she heaved a heavy sigh, and wiped her nose.
5) Early on, the EEG was inconclusive. As the seizures progressed, the seizures were present, but they couldn't pinpoint 100% the origination point. Even with PET, SPECT, MRI, and EEG it was still a guess for the 2 Redo surgeries.
Jessie's original Hemispherectomy was anatomical. A word of caution that this doesn't necessarily mean everthing is taken out. It is not black and white, but more of a continuum when conceptualizing the varying degrees of hemispherectomy from "hemisphereotomy" to "Anatomical" and everything between, including "functional".
So the neurosurgeon at Cook Children's, in Jessie's first Re-do, tried to make sure everything was disconnected by retracing the corpus collosum. She was having seizures again soon after her first redo. It was obvious it didn't work. He didn't remove any tissue, because he felt that it was all disconnected.
The second Redo, the one that finally seems to have worked, went after small "button-sized" pieces of tissue in the frontal (Gyrys Rectus), Temporal, and Occipital areas. (I don't say lobes, because there were no lobes left from her original surgery).
The surgeon has decided, because of Jessie, that he plans to remove the Gyrus Rectus from now on in most hemispherectomy cases, especially Rasmussen's kids. This tissue, about the size of a few shirt buttons in the frontal lobe near midline seemed to be causing all of her problems.
Another reason that I want to share this, is that I was on Youtube last night, watching kids with post-hemi seizures, and some presented very similar to Jessie's. Her seizures are also on Youtube to compare. I know all kid's brains are different, but maybe this will help others, especially if the Gyrus Rectus does indeed tend to control ipsilateral eylid twitching.
See everyone in California for the Hemispherectomy Foundation Conference and Family Reunion!
Cris
Wednesday, June 1, 2011
Jessie and Her Multiplication Facts
In Aledo, 2nd Graders have to learn their Multiplication Facts up to 5's at the end of the year. Well, Jessie was in the hospital during most of this time, so she has been working hard to get the facts straight.
This is a video of Jessie doing her multiplication facts. My beautiful daughter will finish 2nd Grade this year, has one-half of a brain (literally and anatomically), has been in the hospital over 200 days in the past 4 years, 5 brain surgeries, and missed 3 of the 5 weeks while her classmates learned their multiplication facts. Am I a proud Daddy? You bet I am!!
Also, I have to point out that 4 weeks ago she was having 60+ seizures a day, and slept most of the school day away in the nurse's office. It is absolutely amazing what half a brain can do when the seizures are eliminated on the bad side.
Here is the video, and sorry again about bragging.
http://www.youtube.com/watch?v=lueBxxNCMwE
See everyone in California in July. Horray only one month away!
Cris
This is a video of Jessie doing her multiplication facts. My beautiful daughter will finish 2nd Grade this year, has one-half of a brain (literally and anatomically), has been in the hospital over 200 days in the past 4 years, 5 brain surgeries, and missed 3 of the 5 weeks while her classmates learned their multiplication facts. Am I a proud Daddy? You bet I am!!
Also, I have to point out that 4 weeks ago she was having 60+ seizures a day, and slept most of the school day away in the nurse's office. It is absolutely amazing what half a brain can do when the seizures are eliminated on the bad side.
Here is the video, and sorry again about bragging.
http://www.youtube.com/watch?v=lueBxxNCMwE
See everyone in California in July. Horray only one month away!
Cris
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