tag:blogger.com,1999:blog-86115031465556985252024-02-19T08:50:14.641-06:00Jessie's Blog<b></b> <hr>
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HOW TO HELP :<br>The Hemispherectomy Foundation <br>
<a href="http://www.hemifoundation.org/">
HemiFoundation.org</a>
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</i>Jessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.comBlogger322125tag:blogger.com,1999:blog-8611503146555698525.post-29735853872639216472013-12-06T13:58:00.001-06:002013-12-06T13:58:25.879-06:00I 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.<br />
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I guess we are used to the "New" normal in our lives.<br />
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If you are new to the world of Rasmussen's Encephalitis and/or Hemispherectomy, I encourage you to visit <a href="http://www.hemifoundation.org/">http://www.HemiFoundation.org</a> . It exists, like this blog, to help others navigate through this very difficult journey. Without Jessie Hall, none of this would exist.<br />
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God Bless!Jessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com6tag:blogger.com,1999:blog-8611503146555698525.post-14381381430910187922012-04-09T18:30:00.002-05:002012-04-09T18:33:36.324-05:00Seizure Free and Off TegretolQuick 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!!!<br /><br />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.<br /><br />There is never 100% certainty, but her neurologist at Cook Children's and us are ready to give it a go.<br /><br />Happy Easter. CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com4tag:blogger.com,1999:blog-8611503146555698525.post-52022923971362886202011-12-29T20:01:00.003-06:002011-12-29T20:16:48.951-06:00Eight Months Seizure Free and Christmas in WyomingThe 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.<br /><br />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.<br /><br />But this year, we made it! <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Horray</span>!!<br /><br />On the way up, we were able to attend the 2011 <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Hemi</span> Jam, Concert, <span id="SPELLING_ERROR_2" class="blsp-spelling-error">benefitting</span> the <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Hemispherectomy</span> Foundation <a href="http://www.hemifoundation.org/">http://www.HemiFoundation.org</a> . Dan and <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Saasha</span> Huston did an <span id="SPELLING_ERROR_5" class="blsp-spelling-error">outstading</span> job on this benefit, bringing in amazing talent and lots of funds to help children impacted by <span id="SPELLING_ERROR_6" class="blsp-spelling-error">hemispherectomy</span> brain surgery. It was a fun time for all. Gibson Huston was the star of the show with his Elvis act.<br /><br />Once we made it to Wyoming we were finally able to see The <span id="SPELLING_ERROR_7" class="blsp-spelling-error">Hemi</span> Lighted Forest of Hope! <a href="http://www.hemiforest.com/">http://www.hemiforest.com/</a> . Wow! This was an amazing display of lights, honoring each and every child who has endured <span id="SPELLING_ERROR_8" class="blsp-spelling-error">Hemispehrectomy</span>. Each brightly lit tree represented a <span id="SPELLING_ERROR_9" class="blsp-spelling-error">Hemi</span> Child. There was even one for Jessie. If you haven't adopted a tree/child, there is still time to do so at <a href="http://www.hemifoundation.org/">http://www.hemifoundation.org</a> .<br /><br />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.<br /><br />So, I must say that it was a special trip. Jessie is seizure free, and we finally got to see the <span id="SPELLING_ERROR_10" class="blsp-spelling-error">Hemi</span> Lighted Forest of Hope! It is all about HOPE!<br /><br />Merry Christmas and Happy New Year to All !<br /><br />Cris and Kristi HallJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com1tag:blogger.com,1999:blog-8611503146555698525.post-45992211660959401612011-06-02T09:43:00.002-05:002011-06-02T09:44:31.650-05:00Hemi Redo Summary - SuccessJessie 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.<br /><br />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.<br /><br />Jessie's returning seizures were characterized by:<br />1) Discomfort in the stomach (Aura if you will), followed by...<br />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.<br />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.<br />4) When it was over she heaved a heavy sigh, and wiped her nose.<br />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.<br /><br />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".<br /><br />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.<br /><br />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).<br /><br />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.<br /><br />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.<br /><br />See everyone in California for the Hemispherectomy Foundation Conference and Family Reunion!<br /><br />CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com3tag:blogger.com,1999:blog-8611503146555698525.post-1145480456397626582011-06-01T20:56:00.003-05:002011-06-01T21:01:04.716-05:00Jessie and Her Multiplication FactsIn 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.<br /><br />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!!<br /><br />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.<br /><br />Here is the video, and sorry again about bragging.<br /><a href="http://www.youtube.com/watch?v=lueBxxNCMwE">http://www.youtube.com/watch?v=lueBxxNCMwE</a><br /><br />See everyone in California in July. Horray only one month away!<br /><br />CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com3tag:blogger.com,1999:blog-8611503146555698525.post-52171364314254778462011-05-28T08:24:00.003-05:002011-05-28T08:31:24.451-05:005 Weeks Seizure Free and Helping Make BreakfastToday, Jessie is 5 weeks post Hemispherectomy Re-do, and we are happy to report that Jessie has been seizure free since surgery. We are cautiously optimistic about her seizure freedom, but very happy with the results so far.<br /><br />Her neurologist at Cook Children's is taking her off of Vimpat, and she will continue on Tegretol for the forseeable future.<br /><br />This morning, Jessie celebrated by helping make breakfast. Here is her one-handed egg breaker from Walmart's "As Sold on TV" section.<br /><br /><a href="http://www.youtube.com/watch?v=tTYg6F-j-aE">http://www.youtube.com/watch?v=tTYg6F-j-aE</a><br /><br />Check out what is written on her t-shirt.<br /><br />For those of you going to California Disneyland this summer, for the Hemi Foundation Conf. and Family Reunion, we'll see you on July 7th. If you haven't registered yet, do so ASAP. <a href="http://www.hemifoundation.org/">http://www.HemiFoundation.org</a> .<br /><br />Best Regards, CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com0tag:blogger.com,1999:blog-8611503146555698525.post-17550525858439255472011-05-06T11:19:00.002-05:002011-05-06T11:20:52.293-05:00Jessie Update : 2 weeks Post SurgeryJust a quick update on Jessie. She is recovering well, but not quite to<br />baseline, but progressing well. She will start back to school on Monday.<br /><br />She has been seizure free now for over 2 weeks, so we are cautiously optimistic.<br />Dr. Donahue at Cook Children's removed only three small tissue parts (the size<br />of peas) from her temporal, occipital, and frontal areas. These little pieces<br />of tissue were really all that remained in the right hemisphere, and he even<br />thought those were disconnected.<br /><br />Prior to this surgery, her 2nd Hemi Redo, she was having 60+ seizures a day. <br />(complex partial, where she had some awareness, right eyelid twitching)<br /><br />We are too cautious now to claim victory over seizures. Ask me in 10 years or<br />so. But right now, things are good.<br /><br />Jessie will be attending Summer School to make up for some of what she missed,<br />and then Constraint Therapy at UAB before coming to Anaheim for the Hemi<br />Foundation Conf.<br /><br />We look forward to seeing many of you at the Dreams on Wings 5K and at The Hemi Foundation Conference and Family Reunion at Disneyland this summer.<br /><br />If you haven't signed up for the walk/run, you can still do so at http://www.HemiFoundation.org .<br /><br />Thanks for all of your prayers and support.<br /><br />Cris and KristiJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com0tag:blogger.com,1999:blog-8611503146555698525.post-80888487841520879822011-04-27T09:51:00.002-05:002011-04-27T09:53:59.528-05:001 Week Post Op for Re-Re-DoOne Week Post 2nd ReDo Surgery<br />Jessie finally at a few bites of food yesterday, and we have not seen any seizures so far, so we are cautiously optimistic. A week into her first re-do, we had already seen three seizures. So far, none yet this time.<br /><br />They took small bits of tissue from the frontal, temporal, and occipital lobes. Since her first Hemi was anatomical, there was very little tissue left. These pieces were about the size of a pea. We still have not received the pathology report to know if Rasmussen's was present.<br /><br />The interesting thing, is that Jessie is acting much more like her first Hemispherectomy, rather than the first redo. I do believe that they got some tissue that was still connected, as she is having a much harder time getting through this recovery than her re-do in December 2010. She is having a hard time walking, and still can't walk without help.<br /><br />Her right hand shakes with tremmors, and she has a hard time doing fine motor skills. This is her good hand. She is also making grimmaces with her face. Hopefully this is all her irritated brain healing from the surgery.<br /><br />Only time will tell. I anticipate that she will get to go home by the weekend.<br /><br />I feel certain that she will be at the 2011 Dreams on Wings 5K to cheer on the runners. If you haven't signed up yet, please do at http://www.HemiFoundation.org . Remember, you can be a virtual runner, if you can't actually make it to the run/walk. <br /><br />Thanks for your thoughts and prayers,<br /><br />Cris and KristiJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com0tag:blogger.com,1999:blog-8611503146555698525.post-22556371023677876592011-04-06T10:12:00.001-05:002011-04-06T10:13:27.576-05:005th Times a Charm - More Brain SurgeryAfter input from many doctors, it has become apparent that Jessie needs to have brain surgery yet again. Including shunt and revision, this will be her 5th brain surgery. Hopefully, we can finally put an end to her seizures with this procedure, but there are no guarantees.<br /><br />There are small amounts of tissue left in her frontal and temporal lobes that may be the cause, but even with EEGs, MRIs, SPECTs, PETs, etc.., no one can be sure.<br /><br />She can't live with the seizures, and even on her increased medications she has 5 or more a day.<br /><br />Right now, the plan is to have the surgery in mid-to-late May. She would continue with school until the day of surgery, then finishing out her school year in the hospital or with home-bound instruction.<br /><br />The surgery will be done at Cook Children's Medical Center by Dr. Donahue.<br /><br />Blessings,<br /><br />Cris and KristiJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com4tag:blogger.com,1999:blog-8611503146555698525.post-69388434564530876522011-03-08T21:33:00.016-06:002011-03-08T22:11:09.105-06:00Life is a Rollercoaster<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUxfS9u7yApDKiKe6UqtK7EY17ISCJYpxe_Ia4euy_9AFJVmXcepFf2w4X52TgoYwFyeqHIzSGmyPl1dmAUcglgYnrd85aqOHQKmxvfEuG-ROSuUfgQp6VTPrt1vHeBrarCunK24s4SJOd/s1600/IMG_0020.gif"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUxfS9u7yApDKiKe6UqtK7EY17ISCJYpxe_Ia4euy_9AFJVmXcepFf2w4X52TgoYwFyeqHIzSGmyPl1dmAUcglgYnrd85aqOHQKmxvfEuG-ROSuUfgQp6VTPrt1vHeBrarCunK24s4SJOd/s320/IMG_0020.gif" border="0" alt=""id="BLOGGER_PHOTO_ID_5581923379556457218" /></a><br /><br />We’ve all heard that phrase or saying before. “Life is a rollercoaster.” Although is it a bit cliché, it most certainly describes the last three years for Jessie. The past 9 months have been full of twists and turns: hydrocephalus, shunt surgery, surprise brain shift over mid-line and subsequent shunt revision, and an attempt before Christmas to stop the seizures originating from the right side of her “brain” by disconnecting some remaining frontal and parietal tissue. Did you notice the word “attempt”? Unfortunately, despite best efforts by our wonderful doctors at Cook Childrens Hospital and consultation from Drs. Carson and Mathern, the seizures are still very present. In January, we were hoping that they were a result of a healing brain – after all, Jessie has been put through the mill since last August. Perhaps she just needs some time to heal. <br /><br />The reality is that we are dealing with tissue affected by Rasmussen’s Encephalitus. A relentless disease that just doesn’t stop. To learn more about RE, go to http://rechildrens.com. Learn more about the great work our good friends Seth and Deb Wohlberg are doing. Their daughter Grace is affected by RE as well.<br /><br />Having said that, Jessie’s seizures have been slowly increasing in number and severity. . . . wearing her out and causing her to hit the hay by 6:00 pm a lot of nights the past 3 weeks. We are looking at the possibility of precocious puberty and the effect of hormones on seizures. We were also scheduled to go into the EMU the weekend of March 5 but seizures increased to over 30 by the Wednesday before so we went in early for VEEG and MRI studies. In the end, we left the EMU with a plan –Vimpat and Klonopin have been added to our arsenal of AEDs. Hormones are most likely not the trigger for the seizures but we can slow down the onset of puberty if insurance will allow. Jessie’s case is being reviewed by “The Big Brains” at Cooks (Drs. Malik, Hernandez, Perry, and Donahue) as well as Drs. Carson (Hopkins) and Mathern (UCLA). Looks like surgery may be in her future again – hopefully we can hold off until later in the summer to give her more time between surgeries. This is all still speculation but we feel this is most likely the outcome. <br /><br />Through it all though, our Warrior Girl, (thanks Pete – she is totally a Warrior), has lifted both arms in the air (she does this well with her left arm!) and is riding this coaster with abandon. Below is a little time line of the past few weeks. <em><strong>Happy 9th Birthday Jessie!</strong></em><br /><br /><strong>2/26/11 Special Girls Day Out! Celebrating Jessie’s Birthday a Little Early</strong><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5xhlGIQZzF7TqlEtXpgn1mEnLY3NHB2KF2H654wiYWe9_cq2JYuZ9GHNYDgNeYKOexIcm9TC-bkmaaETETs13ofyVwHUd63IJHvYU_xyVX6i41taWAQfTCXHHGzAGhPLkapOfbEsyBAYo/s1600/IMG_0309.gif"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5xhlGIQZzF7TqlEtXpgn1mEnLY3NHB2KF2H654wiYWe9_cq2JYuZ9GHNYDgNeYKOexIcm9TC-bkmaaETETs13ofyVwHUd63IJHvYU_xyVX6i41taWAQfTCXHHGzAGhPLkapOfbEsyBAYo/s320/IMG_0309.gif" border="0" alt=""id="BLOGGER_PHOTO_ID_5581924958012637730" /></a><br /><br />We knew that Jessie wouldn’t get to party the weekend before her birthday, so we set up a fun day with one of her BFFs a little early. Jessie and her friend Emma had a great time at the spa getting a mani and pedi and lunch. Fun time in the hot tub, red velvet cake, and presents after – what a day! <br />A fun day but seizures wore her out – she went to bed at 4:00 pm!<br /><br /><strong>2/27/11 Shoot’n Shotguns!</strong><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidznhewMIgbToQB6izV408_mkbC3BM_WNqaK4q6BSprwi94K7M1X9944SjZtlscJ3Tjnj1YDVLXbcgttLUIyJCOy38GYLaebj7of1YxCmp5BeomJU2Y3_4al8LeSBGXr5HLMa4-JBk18G0/s1600/IMG_0362.gif"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidznhewMIgbToQB6izV408_mkbC3BM_WNqaK4q6BSprwi94K7M1X9944SjZtlscJ3Tjnj1YDVLXbcgttLUIyJCOy38GYLaebj7of1YxCmp5BeomJU2Y3_4al8LeSBGXr5HLMa4-JBk18G0/s320/IMG_0362.gif" border="0" alt=""id="BLOGGER_PHOTO_ID_5581925457399721202" /></a><br /><br />Santa brought each of the kids a .410 shotgun for Christmas but with all the craziness that ensues at our house, we hadn’t had a chance to shoot. The opportunity presented itself, so we jumped at the chance! We all had a great time, including Jessie. A nap to and from helped her get through the day.<br /><br /><strong>3/8/11 Happy Birthday Jessie!</strong><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHgGiFmiUynQfT8TZq-ZQo2X0d88U7XPe6weSTgqf_9XqKMS4eoqHnCkoloJ00rpug3guDHvo0qSTOBZpN5QcAFdRY2w-SviI36FaXDt6W4uUnsijrvtM8oCZjm972POdHBAuKvZHL5Mct/s1600/IMG_0499.gif"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHgGiFmiUynQfT8TZq-ZQo2X0d88U7XPe6weSTgqf_9XqKMS4eoqHnCkoloJ00rpug3guDHvo0qSTOBZpN5QcAFdRY2w-SviI36FaXDt6W4uUnsijrvtM8oCZjm972POdHBAuKvZHL5Mct/s320/IMG_0499.gif" border="0" alt=""id="BLOGGER_PHOTO_ID_5581925745331131010" /></a><br /><br />Dinner at Logan’s Road House and lot’s of Justin Bieber goodies. <br /><br /><strong>Life Is Good</strong><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYI2pse0XLAhs2Kl7gknYt34DatdPawGW2GPvccCMNsRWF638iva2A61siJrqtlXP73ngKYPeGls6YC2I7IKcffzpuafE4Rm4W_A1LRJrM3ypGFjVP6unkeF9fqrHQI278iBa8v7SLd6Py/s1600/IMG_0022.gif"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYI2pse0XLAhs2Kl7gknYt34DatdPawGW2GPvccCMNsRWF638iva2A61siJrqtlXP73ngKYPeGls6YC2I7IKcffzpuafE4Rm4W_A1LRJrM3ypGFjVP6unkeF9fqrHQI278iBa8v7SLd6Py/s320/IMG_0022.gif" border="0" alt=""id="BLOGGER_PHOTO_ID_5581926690381107970" /></a>Jessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com3tag:blogger.com,1999:blog-8611503146555698525.post-43920274080258585512011-02-18T10:38:00.001-06:002011-02-18T10:40:40.555-06:00A Chance to Tell Your Story and Make a DifferenceHi All,<br />Below is a letter from Dr. Gary Mathern, Pediatrice Neurosurgeon at UCLA . If you or someone you know has epilepsy, please read and participate. Thanks, Cris<br /><br /><br />To all,<br />I am writing to inform you of an opportunity that as a family with someone with epilepsy you might want to take advantage of.<br />The Institute of Medicine (IOM) based in Washington DC is a non-partisan NGO that performs studies at the request of Congress, NIH, and the Department of Health and Human Services (DHHS) related toward developing public policy for diseases. Over time these reports have had significant impact not only on health policy in the US but internationally because of their scholarly content and thoughtful consideration of patient needs. Very few IOM studies have been on neurological diseases.<br />The IOM has been charged by DHHS and NIH with looking at epilepsy in determining needs that might guide federal public health policy and funding in this field. Compared with other neurological diseases, epilepsy affection 1% of the population gets fewer federal resources compared with Stroke and Parkinson’s Disease. A strong report by the IOM would likely get attention to help people with epilepsy and is an exciting opportunity for us.<br />As part of the IOM’s work, there will be 3 open public meetings of the IOM epilepsy committee. The first already occurred in Washington DC in January top charge the committee, the second will be at the Beverly Hilton on March 21, 2011, and the final open meeting will be in DC at the end of June. Drafts of the report will be finished by late fall 2011 with a final product spring 2012. The open meetings include time for public testimony (limited to 3 minutes) and one of the major items (Panel 1) for the March meeting is the impact of epilepsy on patients, families, etc. I know of this work because I am the representative for a couple of the sponsoring organizations, such as the ILAE, Hemispherectomy Foundation, and RE Children’s project.<br />The IOM public meeting in March is an opportunity for your individual voices to be heard about epilepsy and access to care. The IOM committee has already expressed that the public stories they heard at the January meeting had great impact even if each story is fairly short. If you have a passionate voice and wish to participate, here is your chance. This will be the only west coast opportunity to publically talk to the IOM. To attend, you will need to register (go to www.IOM.edu/epilepsy) and if you want to speak you will need to send them an email (instructions on the site). If you cannot attend and still want to be heard, there is an email address on the IOM web site for you to send in your comments and stories that will be passed on to the committee. The committee is interested in knowing if getting access to epilepsy care was easy or not and the quality of care that you received.<br />Please, also send this note to any other families in Southern California you think might be interested.<br />Thank you for your time. If you have any questions, please let me know. If you decide to attend please let me know as well.Jessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com0tag:blogger.com,1999:blog-8611503146555698525.post-72181801090752770462011-02-05T19:41:00.003-06:002011-02-05T19:49:13.066-06:00"Hope in One Hemisphere" Hits the InternetOur wonderful friends Jack <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Epsteen</span> and Julie <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Dolson</span>, in California, just released an amazing video that will soon be up on The <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Hemispherectomy</span> Foundation website, but can be seen immediately on the <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">Internet</span> through <span id="SPELLING_ERROR_4" class="blsp-spelling-error">vimeo</span> at this link : <a href="http://vimeo.com/19557074">Hope in One Hemisphere Video</a> .<br /><br />If you need an emotional refill, watch this video. If you want more insight into the life of a <span id="SPELLING_ERROR_5" class="blsp-spelling-error">Hemi</span> Family, watch this video. If you are in the <span id="SPELLING_ERROR_6" class="blsp-spelling-error">Hemispherectomy</span> Community and you don't want to feel alone, watch this video. Or if you just want a warm fuzzy feeling about kids who are more amazing than any you have met, click the link above and enjoy.<br /><br />This video was filmed at the International <span id="SPELLING_ERROR_7" class="blsp-spelling-error">Hemispherectomy</span> Foundation Conference and Family Reunion in Indianapolis in 2010.<br /><br />Enjoy! CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com2tag:blogger.com,1999:blog-8611503146555698525.post-36760739211203862252011-01-02T14:33:00.006-06:002011-01-02T14:53:57.205-06:00Happy New Year!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkZ1ngvxvIu_5y42zRQzH7KnnI0nXxK0ezsP-WGUf-YJPCLFBgR8zNhbv3dBKXee58iuSfjrYQWCtkUqX09OzdXNeO9ZlC2C95K2DOhBJvSZFuSFnzyAgG2RhgC8O7AfyUQvBWa4Ea2nqd/s1600/s41267ca111838_17_1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkZ1ngvxvIu_5y42zRQzH7KnnI0nXxK0ezsP-WGUf-YJPCLFBgR8zNhbv3dBKXee58iuSfjrYQWCtkUqX09OzdXNeO9ZlC2C95K2DOhBJvSZFuSFnzyAgG2RhgC8O7AfyUQvBWa4Ea2nqd/s400/s41267ca111838_17_1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5557694625702494882" /></a><br /><br /><br />The last 6 months of 2010 were quite a challenge for the Hall family. Jessie's hydrocephalus and increase in seizures really threw us for a loop. But now it's 2011 and time for new beginnings! Time to put all all that behind us and look forward to bright and promising opportunities!<br /><br />Jessie has been doing very well since she came home just before Christmas. She still gets tired in the afternoon but is getting stronger every day! She is going to start school with everyone else, so she hasn't missed a beat.<br /><br />Matt, Jake, and Josh are all "excited" about starting back to school as well. I think part of it is putting away all the video games - time to earn them back in 6 weeks with good grades!<br /><br />Cris and I are rejuvenated. I think we needed the Christmas break just as much as Jessie did to rest and catch up on a lot of things that were neglected the last few months.<br /><br />Happy New Year! Here's to new beginnings!Jessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com2tag:blogger.com,1999:blog-8611503146555698525.post-20254372658208317082010-12-22T19:18:00.002-06:002010-12-22T19:23:34.596-06:00Jessie is Home !After a nice Christmas Concert at Cook Children's Medical Center with Randy Travis, Charlie Pride, and some other Country stars, Jessie was released and is now home.<br /><br />Pictures below, including one with Jessie and Randy Travis.<br />http://www.star-telegram.com/2010/12/22/2723369/country-singers-entertain-patients.html<br /><br />So, Jessie is beginning to feel much better and we feel blessed to have her home. On the down side, she has had 3 seizures since surgery. That really bites. It is too early to call the surgery unsuccessful. We'll give it a few months, and give her brain time to heal from the trauma of brain surgery, and then we will know for sure.<br /><br />No need to speculate until then. One Day at a time and Thanks to God ! Thanks to you all for your prayers, emails, Facebookings, Texts, Calls, Gifts, Visits. We Love You.<br /><br />Blessings to all for a Merry Christmas. CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com3tag:blogger.com,1999:blog-8611503146555698525.post-47793412096866962962010-12-20T21:46:00.002-06:002010-12-20T21:48:40.792-06:00Things are Looking Up!Hi All,<br /><br />It looks like we have turned the corner on Jessies' Redo surgery. Tomorrow will be day 6, and she is turning the corner and beginning to feel pretty good again. She still has a few more days in the hospital, I'm certain, and the swelling is still pretty bad, but we are seeing smiles again.<br /><br />For those of you who are not aware, 5 days ago, Jessie underwent a redo hemispherectomy surgery to battle returning seizures from her original Hemispherectomy in 2008 for Rasmussen's. Her original surgery was at Johns Hopkins by Dr. Ben Carson, and the Redo was performed at Cook Children's in Fort Worth, Texas by Dr. David Donahue.<br /><br />Even though her original hemispherectomy was anatomical, there was some tissue and connections that were remaining and seizing. Dr. Donahue retraced a complete Corpus Collosotomy and disconnected some other tissue in the frontal lobe that was remaining.<br /><br />I can't tell you if this surgery was successful yet, and really shouldn't try for months...and even then, it will be an optimistic guess. All of you know who have Hemi Kids know what I mean.<br /><br />Jessie had a really rough time over the past few days, but is now starting to "turn the corner", and finally ate today and even held it down. She has been plagued with nausea, headaches, and lethargy since surgery, most likely from Chemical Meningitis. This is fairly common for these type of surgeries.<br /><br />I continue to update regularly on Facebook.<br /><br />Thanks for all of your support. I think that Jessie will be home for Christmas...hopefully seizure free for good.<br /><br />Kind Regards,<br /><br />Cris and Kristi Hall<br /><br />To Learn More about Hemispherectomy, see http://www.HemiFoundation.orgJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com0tag:blogger.com,1999:blog-8611503146555698525.post-893379296957366742010-12-18T11:17:00.001-06:002010-12-18T11:17:59.108-06:00Post Surgical TrialsQuick Update on Jessie. I am mostly doing my updates on Facebook now, so if you are looking for more up-to-date status, please send a Friend Request to Cris Hall. <br /><br />Jessie had 104.2 fever earlier. This sounds bad, but after brain surgery, this does not indicate a bacterial infection like it would in you or I. Basically, the spinal fluid has so much debris in it, the body goes into an immune response with fever. Hopefully over the next few days, this will get better.<br /><br />She is still unable to hold food down, and is mostly lethargic, not drinking or eating.<br /><br />She is out of PICU, and we are in a private room, which is nice. Kristi’s mom and dad are here now, and that made Jessie smile this morning. She has not had any more seizures, since the one immediately post surgery. Hopefully, that was just due to post-surgical irritation.<br /><br />Thanks for all of your prayers.<br /><br />Kind Blessings to all of you.<br /><br />Cris and Kristi<br />http://www.HemiFoundation.orgJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com2tag:blogger.com,1999:blog-8611503146555698525.post-21734923817369649582010-12-15T11:26:00.001-06:002010-12-15T11:27:34.188-06:00Surgery TomorrowToday, we will be at Cook Children’s Medical Center for Pre-Op, Registration, and all the other pre-operative stuff that you have to do. Jessie’s surgery will be Thursday (tomorrow). I will try to keep everyone updated, probably on Facebook, as that seems to be the most used media these days.<br /><br />The increase in Tegretol has kept Jessie’s seizure to only a couple a day, and not very intense, so she has been able to continue in school this week. Her seizures look something like a combination of a complex partial, and simple partial seizure, beginning with a tummy ache, then staring, and some twitching in her right eye. They are mild, but they continue to break through the Tegretol dose. It is just a matter of time til we would be back in the ER like last week.<br /><br />The saddest part, is that yet another year, she misses her class Christmas Party. This is pretty important to a 2nd grader, but she hasn’t complained one time. Kristi and I were looking at our vacation spent this year, and over ½ was spent for hospital time. Really, this has been a harder year for Jessie than her 1st complete year after surgery. We pray that this will be the last one.<br /><br />So, Dr. Donahue will be going after some tissue and connections that are firing up on the SPECT Scan when Jessie is seizing. It is small amounts of tissue and two connections that need to be severed. Unfortunately, It is full-open, brain surgery just like her 2008 Hemispherectomy. Fortunately, recovery shouldn’t be as long as the first surgery. If all goes well, her stay at Cooks shouldn’t be over a week….God willing less.<br /><br />On the bright side of things, if Jessie feels well, Christmas time at Cook Children’s is magical. They really spoil the kiddos there all the time, but Christmas is over the top.<br /><br />Kristi and I once again ask for your prayers. It seems like every time we turn around, we are asking everyone to pray for Jessie. We are not too proud to keep asking, so please pray for Jessie and her doctors and for a quick recovery.<br /><br />Blessings,<br /><br />Cris and Kristi HallJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com6tag:blogger.com,1999:blog-8611503146555698525.post-75646627761166076292010-12-09T22:01:00.005-06:002010-12-09T22:15:48.900-06:00A Little Bit of Christmas Fun!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTVa6nsFFIuzLbIxtJhcW74fA5CRr4Zf05az2wPwFSheRYTPwVrV5KzyaaL6A_TWkVSQgVi3oMrVhkdfBsxaPb52_6nAgBb40XSAilP-6AnDEWoDteJfJW_tKqefgUq_gmt3urpJMk42f7/s1600/Jessie_120410.JPG"><img id="BLOGGER_PHOTO_ID_5548901288901108018" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 307px; CURSOR: hand; HEIGHT: 300px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTVa6nsFFIuzLbIxtJhcW74fA5CRr4Zf05az2wPwFSheRYTPwVrV5KzyaaL6A_TWkVSQgVi3oMrVhkdfBsxaPb52_6nAgBb40XSAilP-6AnDEWoDteJfJW_tKqefgUq_gmt3urpJMk42f7/s400/Jessie_120410.JPG" border="0" /></a> 12/09/2010<br /><div></div><div>Amongst all the craziness that seizures bring to our life, Jessie and I were able to go with her Brownie troop to see the play Rudolph at Casa Manana last Saturday. Jessie and her troop dressed up to attend the play, take tickets, and pass out play bills. The girls (and their moms!) had a great time! I took this picture before we left for the play . . . Jessie looks so grown up! No one knew that we were hiding 29 staples from her scar revision and EEG glue with that cute hat!</div>Jessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com2tag:blogger.com,1999:blog-8611503146555698525.post-23117962131414584142010-12-07T10:39:00.002-06:002010-12-07T10:41:53.143-06:00Jessie's Surgery Date SetSurgery Date Set<br /><br />It’s been almost 3 and ½ years since we traveled to Johns Hopkins for Jessie’s initial brain surgery. Any time a hemispherectomy is performed; there is a chance that seizures will return, although they are usually less frequent and less severe than before surgery. We have watched many families go through a second surgery, and have always hoped that this wouldn’t happen to Jessie.<br /><br />But here we are…..<br /><br />I have said this many times, and I continue to emphasize it. We are blessed. There are many families, who we have met, that have no options of treatment, no hope for a brighter future. As hard as it may be to believe, we are the lucky ones. We have options and we have hope that Jessie can lead a life free of seizures.<br /><br />This is what this second surgery is all about. It is about giving her that chance. Watching what the seizures did to her last week in the hospital made it an easy decision. Starting to carry Diastat (Seizure Rescue Medication) again, and increasing her seizure medication just brought back all of the old memories, but this time the decision was easy. Brain surgery is not the only option. We could try increased doses of seizure medication, and that might work, or maybe not. Brain surgery might not even work, but if it does, she can be free of the seizures and medications of epilepsy.<br /><br />There are no guarantees with brain surgery, and the risks are real and present. On the positive side, however, and if all goes well, her hospital stay shouldn’t be nearly as long as after her hemispherectomy. Also, she shouldn’t lose any function that she currently has, which means no in-patient rehab on the 6th Floor at Cooks.<br /><br />So, Surgery is scheduled for Thursday, Dec. 16th at Cook Children’s Medical Center. Dr. David Donahue will be doing the surgery. We are confident that he can do the job, as he has considerable hemispherectomy experience. This means that we will not be traveling to Johns Hopkins for this surgery. Dr. Donahue has been taking care of Jessie with shunt surgery and revisions, and we are confident that he can do a fine job on this surgery.<br /><br />Thanks to all of you for your prayers and gifts for Jessie. Please keep the prayers up. We respectfully ask that in place of gifts, you send a card or make a donation in Jessie’s honor to one of the following organizations.<br /><br />The Hemispherectomy Foundation <a href="http://www.hemifoundation.org/">http://www.HemiFoundation.org</a><br /><br />The RE Children’s Project <a href="http://www.rechildrens.org/">http://www.rechildrens.org</a><br /><br />Citizens United for Research in Epilepsy <a href="http://www.cureepilepsy.org/">http://www.cureepilepsy.org</a><br /><br />Blessings to All,<br />CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com3tag:blogger.com,1999:blog-8611503146555698525.post-12976994133467597892010-12-02T17:13:00.002-06:002010-12-02T17:15:59.561-06:00Seizures and What to do NextJessie is having a much better day today. She is eating again, smiling, and active. She is a different kid than she was yesterday. She even did her homework today. Praise God and the doctors for watching over our girl !!<br /><br />Her seizures today are much less severe and less frequent. Because they had to give her rescue medicine 2 days ago (Ativan) for a Status Seizure (one that won’t stop on its own), and other sedation for yesterday’s MRI, it appears that the cycle is broken, temporarily. This buys us some time and allows her to gain strength, eat, and rest from the seizures. Here primary epilepsy medication (Tegretol) has been increased, and will continue to increase to hold off the seizure activity.<br /><br />Dr. Hernandez (epileptologist) came by today, and showed me her EEG. It was obvious that she was having seizures in the right hemisphere. He also showed me her MRI today. He showed me that there was some leftover tissue and two connections that were the suspect areas. The SPECT scans should verify this. We will know tomorrow.<br /><br />The good news is that there is no seizure activity in the Left Hemisphere (her good side). This, of-course, would be devastating news for a child that only has the left half of her Cerebral Cortex.<br /><br />So what are the next steps? Well, unfortunately, it looks like Jessie will have to undergo brain surgery to have this tissue removed and the connections clipped. Medication is usually very ineffective, in the long-term, for Rasmussen’s tissue, and Kristi and I don’t want to take a chance with the connections that are still there. The last thing that we need is seizure activity crossing over to the good Hemisphere. This follow-up surgery is not uncommon in the Hemispherectomy community…which is unfortunate. In the “Hemi Community” we call this surgery a “Redo”, which is bit of a misnomer.<br /><br />The rehabilitation should be much easier this time, and her hospital stay should be much shorter than in 2008. As you all know, Jessie an extremely strong-willed child, and she is going to be fine, especially with all of you praying for her and God continuing with His glorious plan for her.<br /><br />Thanks to everyone for your prayers, cards, gifts and visits. The prayers are the most important thing. We ask that if feel compelled to do something for Jessie over the next few weeks, please consider a donation to one of the following Public Charities in Jessie’s Name. You can donate online or by mail, just specify “Jessie Hall” in the comment field. All three below are IRS 501c3 organizations, which means you get a nice end-of-the-year deduction.<br /><br />The Hemispherectomy Foundation : <a href="http://www.hemifoundation.org/">http://www.hemifoundation.org/</a><br />The RE Children’s Project : <a href="http://www.rechildrens.org/">http://www.rechildrens.org/</a><br />Citizen’s United for Research in Epilepsy : <a href="http://www.cureepilepsy.org/">http://www.cureepilepsy.org/</a><br /><br />Blessings to All for your support over the past few days.<br /><br />CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com3tag:blogger.com,1999:blog-8611503146555698525.post-45404482329538856652010-11-30T18:58:00.000-06:002010-11-30T18:59:30.520-06:00Seizures Have ReturnedUnfortunately, it looks like Jessie is having seizures again. She is currently in the EMU at Cook Children's in Fort Worth, and the epileptologists believe that she has some seizure activity coming from her hemispherectomy side, from a missed connection and brain tissue left behind in the first surgery. It is deep tissue, and hard to pick up on the scalp EEG.<br /><br />There is some activity on that side, but thank God, there is no activity coming from her good left side. They did a SPECT Scan (like a PET only it looks at blood flow vs sugar uptake...idea being seizure tissue causes more blood flow to seizure area). The results from the SPECT are not in yet.<br /><br />In addition, they will do a T3 detailed MRI tomorrow. At that point, they will make the decision on what to do.<br /><br />Today, she required Ativan to stop a status seizure. She is not doing well, and is eating very little. They are slowly increasing her tegretol, however, we have told the epileptologist and surgeon that if they can pinpoint the tissue and connection, that we want it out and NOW! AEDs and other meds have very little long-term effect on Rasmussen's Encephalitis inflamed tissue.<br /><br />We continue to trust in God and His Plan, and ask for your prayers for Jessie. We believe in the power of prayer and good medical treatment.<br /><br />Blessings to All,<br />CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com8tag:blogger.com,1999:blog-8611503146555698525.post-32035530471723198182010-11-07T22:12:00.005-06:002010-11-07T22:17:36.761-06:00The Hemi Lighted Forest of Hope!Christmas Time is coming early this year, so if work and life is getting you down and you need a good shot of "Feel Good". Check out this story, and especially the link to the images and audio. You'll be glad that you did. This is Kristi's Mom and Dad who did all of this and we hope to see it in the national spotlight soon. Enjoy and Blessings!! Cris<br /><br />The Hemi Lighted Forest of Hope is a celebration of LIFE and HOPE for children all over the world, who have had their lives turned upside down, in a battle against intractable epilepsy. These children all underwent radical brain surgery in HOPE of living a life seizure free. A tree will be lighted for each child who has undergone Hemispherectomy Brain Surgery and who has registered with The Hemispherectomy Foundation. These ...trees and lights represent a celebration of each child’s HOPE for a life without epilepsy.<br /><br />This year, 421 trees will be lit and each year more trees and lights will be added to the Hemi Lighted Forest of Hope.<br /><br />The Lighted Forest Facts :<br /><br />65,000 lights or 3.47 Miles of continuous lighting<br /><br />4.5 Acres of Trees<br /><br />2,000 Feet of underground wiring<br /><br />450 Extension Cords<br /><br />440 String of Multicolored LED Christmas Lights<br /><br />Amazing Vido and Story Here. This is REALLY Cool !<br /><br />Images and Audio - <a href="http://blogs.wyomingnews.com/blogs/shutterspeed/">http://blogs.wyomingnews.com/blogs/shutterspeed/</a><br /><br />Story - <a href="http://www.wyomingnews.com/articles/2010/11/07/news/01top_11-07-10.txt">http://www.wyomingnews.com/articles/2010/11/07/news/01top_11-07-10.txt</a><br /><br />To find out more about The Hemispherectomy Foundation, go to <a href="http://www.hemifoundation.org/">http://www.HemiFoundation.org/</a><br /><br /><span style="color:#ffffff;">Google htpp://www.google.com</span>Jessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com0tag:blogger.com,1999:blog-8611503146555698525.post-87764490799976230732010-10-30T18:04:00.002-05:002010-10-30T18:12:19.907-05:00In for Follow-Up MRI one Day, Brain Surgery the NextJessie is now sporting a new foot-long scar on the back of her head thanks to the most recent round of shunt-revision surgery that took place on Friday morning.<br /><br />The good news, is that she is already home and doing GREAT, except for a huge scar running down the back of her head.<br /><br />On Thursday, we went into Cook Children's Hospital for a routine, follow-up MRI. After the scan, a nurse came in and asked us to stick-around. We knew this couldn't be good. So they found that the Low-Pressure VP shunt that they put in two months ago was working great, and her venticles were nearly normal size again. Unfortunately, there was now a subdural pocket of CSF on the top of her brain. This was caused by the brain colapsing to normal size after being under pressure for so long. Unfortunately, this was pushing the brain past mid-line into the Hemispherectomy space and also pressing on the brain stem. <br /><br />Jessie was experiencing no symptoms of pressure, in fact, most of her symptoms from earlier hydrocephalus had resolved.<br /><br />So, she was admitted for surgery and Friday morning, the shunt was revised with a new branch of tubing to drain from this area as well. The scar is great for halloween.<br /><br />Jessie is doing great, home and playing. We'll get another MRI in a week or so. Hopefully things will be better then.<br /><br />Thanks for all the prayers and encouragement from our friends an family.<br /><br />CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com2tag:blogger.com,1999:blog-8611503146555698525.post-85706784410762330802010-10-13T19:32:00.003-05:002010-10-13T19:37:12.159-05:00Straight "A"sWe're so proud of Jessie for her first 6 weeks of school, she received straight "A"s. She was quite pleased with herself, and that was the best part of it. Hopefully if she likes getting good marks, it will motivate her to keep it up.<br /><br />If only we could see this from our "Fully Brained" Boys. Actually, they did pretty well also.<br /><br />The first 6 weeks is always the easiest, but it was a GREAT way to start for Jessie, considering that she started the year off with shunt surgery due to hydrocephalus.<br /><br />Also, The Hemi Foundation Christmas Card fund raiser has started. Please buy your cards this year in support of these amazing Kids. You can check out the ART work and order from The Hemi Foundation at<br /><a href="http://hemifoundation.intuitwebsites.com/XmasCards2010/2010Christmascards.html">http://hemifoundation.intuitwebsites.com/XmasCards2010/2010Christmascards.html</a><br /><br />Blessings,<br /><br />CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com2tag:blogger.com,1999:blog-8611503146555698525.post-21347384895006732652010-10-10T22:08:00.003-05:002010-10-10T22:11:26.122-05:00The RE Children's Project : Finding a Cure for Rasmussen's EncephalitisI just returned from the RE Children's Project Conference - The goal to one day find a cure for Rasmussen's Encephalitis.<br /><br />The details and summary of the Conference can be found at :<br /><a href="http://rechildrens.com/blog/">http://rechildrens.com/blog/</a><br /><br />Be sure to pass the word on Facebook, Twitter, and your personal Blogs. We desperately need to get the word out.<br /><br />Thanks and God Bless!<br /><br />CrisJessiehttp://www.blogger.com/profile/07759008917804010234noreply@blogger.com0