tag:blogger.com,1999:blog-66451302024-03-06T21:49:36.103-08:00Jenelle's JourneyKellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.comBlogger654125tag:blogger.com,1999:blog-6645130.post-82362000461466873302023-12-07T16:24:00.000-08:002023-12-07T16:24:22.163-08:00The one where I give you all the details...<p><i><span style="font-size: x-small;">Note - I started drafting this entry on November 16, 2023. The next day, we tragically lost the family cat, Bruin, and I was unable to get back to this post before Thanksgiving and no the Christmas rush. Below cuts off quickly and I plan to post it with the November 17th date (but finalized it in early December.) I promise to update more about Jenelle's recovery in the coming days. Thanks!</span></i></p><p>This year continue to be "a lot" to get through. As a parent of a child with Epilepsy, we are obviously superstitcious. Who ever said "It's November, what else can go wrong this year?" needs to be taken out back and spanked with a wooden spoon!</p><p>First of all - thank you all for the continued love, support, cards, meals and continued prayers for our sweet Jenelle during her recent surgeries. Three brain surgeries in 6 weeks is a lot, and that it not all of the issues we've been dealing with for Jenelle. So here is the rest of it, so you can understand why we've aged 10 years in the last 2 months.</p><p>Second Issue - Weight loss. Jenelle is fed via feeding tube - nothing by mouth since losing her front teeth in January 2020. We started to notice she was losing weight in June, when we met with her GI Doctor, Dr. Shaneen Idries on June 25, 2023. At that time, we switched her formula to one with more calories. It took insurance about 6 weeks to get us the correct forumla, which wasn't a problem at the time because I had plently of cases of the current formula for Jenelle. I was told with the switch, we should give the new formula 3 times a day (or 3 cans a day.) We started the new formula the beginning of August.</p><p>When Jenelle was weighed for her SEEG on September 5, she had dropped from 100 pounds to 96 pounds. She was not gaining weight. Because we were dealing with the upcoming surgeries, I decided to increase her to 5 cans of the new formula a day. By the time we got to the RNS surgery on October 17, Jenelle weighed 86 pounds. Something was wrong. During that stay, I asked for the GI department to check in with us because of the significant weight loss. We decided with all of the surgeries, we would "stay the course" with 5 cans a day of the new forumla and scheduled a follow up visit with GI that we had yesterday. </p><p>And while we were addressing the weight loss issues, I was simultaneously dealing with our "Third Issue" - Insurance Change.</p><p>Jenelle has been on what is called an "Institutional Deeming Waver" since around age 6 and her medical insurance is provided by state Medi-cal Insruance. We have known for many months now that when Jenelle turned 21, her medical group, CHOC Health Alliance, would no longer keep her as a patient. Recall that Jenelle had her third brain surgery on October 17, and turned 21 on October 22. As of November 1, Jenelle medical group switched from CHOC Health Alliance to Cal Optima Community Network. The only doctor that was not in the Community Network option was her pediatrician, so Jenelle now has a new "adult" Primary Care Physician, who we had to meet with ASAP to get all of her prescriptions and authorizations for things like Diapers, home nursing, etc. re-approved. Fortunately, my experience jumping through HMO hoops finally paid off. So think of this change similar to changing your medical group if you have an HMO. Lots of hoops to jump through, lots of "I's" to dot and "T's" to cross to get everything back to status quo. </p><p>The insurance change is partly why we expedited the RNS surgery. Had we changed medical groups before the surgery, we would have had to go through the authorization and approvals all over again. Always remember to ask for a case manager when you encounter changes like this with your insurance. One was assigned to Jenelle and we literally talked on thr morning of November 1 - the same day as our post-op visit - and magically she got those two visits approved! There are Angels in this world looking over us.</p><p>Jenelle's recovery has been challenging, but I'll leave that for another post. Thank you again for all the positive thoughts and prayers. I will keep you posted! </p><p><br /></p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-80594718853340735682023-11-02T15:57:00.002-07:002023-11-03T15:58:28.303-07:00RNS Placement - Day 15<p><span style="font-family: georgia;"> <span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Day 15 - Someone looks very excited to go back to school! </span></span></p><p><span style="font-family: georgia;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdyw1C8Z92VdeSH34kR2_DG2Zb6DG4qJWggzjYURzcyppZAomcJdpQPFGbJJdyzH2eadBi1ymSbxgBpR6nlrEN4SlkY2u3xDNvifEOTGqgrZqhQT8dJ-qtPaUJjcKe11Wbpxh27vrB_LsVuSmUWFFcop16SGDgBHWnMnaJdUp-UhAa3_fR9vv5Ag/s4032/IMG_1410.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdyw1C8Z92VdeSH34kR2_DG2Zb6DG4qJWggzjYURzcyppZAomcJdpQPFGbJJdyzH2eadBi1ymSbxgBpR6nlrEN4SlkY2u3xDNvifEOTGqgrZqhQT8dJ-qtPaUJjcKe11Wbpxh27vrB_LsVuSmUWFFcop16SGDgBHWnMnaJdUp-UhAa3_fR9vv5Ag/s320/IMG_1410.HEIC" width="240" /></a></span></div><span style="font-family: georgia;"><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><span style="font-family: georgia;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="☺️" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t82/1.5/16/263a.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">#epilepsy #lgs #lennoxgastautsyndrome #rnssystem #rns #neuropace #epilepsyawarenessmonth</span></span>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-75019825426269655322023-11-01T15:56:00.002-07:002023-11-03T15:57:13.448-07:00RNS Placement - Day 14<p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Day 14 - we had our post op visit today with the Neurosurgeon and Neurologist and the representative from </span><span style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1fey0fg" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.instagram.com%2F_u%2Fneuropace.rns%3Ffbclid%3DIwAR1CQBAi8WUn-4ixlQAO1k6Q4J-7umEgCmMY03y-3v0vRwuMpfcssVfPeo0&h=AT1d6QOHxp-QXBmXg6sKV_ZhUBEYEaE9eC4xeXqsxCSi0xl3ng_svR90TH82_kYCueiykXGi97ejm4tGCLDRz5AzLXKsq9_GmjCitIrHFInI1QTczQY76eEf9xph-qFm2A&__tn__=-UK-R&c[0]=AT1qCRlM48DiiqwbNTbf4PDpQsXqKq_odtRrJdC4el7BjyJVX_6P1zeGy2nfqegq3WXCnGSgRH_ZYeIoTSrqkz8eQWUP-FjA0VeTEADr93n6qiYHIHa5VTMH6F9KlkfLxDs044QDouJo2p2KF1B3Q86BCqfo1Ocy4On-MiKKEMwUCQTDZI-nlw" rel="nofollow noreferrer" role="link" style="-webkit-tap-highlight-color: transparent; animation-name: none !important; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation; transition-property: none !important;" tabindex="0" target="_blank">@neuropace.rns</a></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> we discussed a lot of things, and came away with this … Jenelle’s incisions are healing well and after reviewing all daily data, they decided to turn on the RNS! The RNS is now programmed to send electric stimulation when it detects certain brain wave patterns. Pretty cool! </span></span></p><p><span style="font-family: georgia;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7HWQHv80iS_eAiU9AvMBpivvhuuOIYIMhPd91moui6q7kgpGT2n5Ml_AAI5cDflYd0b-PWFz6t2AdO_iVQIrpTnVCBDdOuhBTCCw6kmKQI5aaetz-EO2U_XiberHfnmTYWfFeog71GCrnPj788DVtrgwtBV1CnHmkoSZEumIGpQlKvF_KBNW_ag/s4032/IMG_1402.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7HWQHv80iS_eAiU9AvMBpivvhuuOIYIMhPd91moui6q7kgpGT2n5Ml_AAI5cDflYd0b-PWFz6t2AdO_iVQIrpTnVCBDdOuhBTCCw6kmKQI5aaetz-EO2U_XiberHfnmTYWfFeog71GCrnPj788DVtrgwtBV1CnHmkoSZEumIGpQlKvF_KBNW_ag/s320/IMG_1402.HEIC" width="240" /></a></span></div><span style="font-family: georgia;"><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span></p><span style="font-family: georgia;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="🧠" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/td5/1.5/16/1f9e0.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="⚡️" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/te4/1.5/16/26a1.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Oh yes, and November is Epilepsy Awareness Month. Needless to say, we are VERY Aware! </span><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="🥰" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t43/1.5/16/1f970.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span></span>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-54252915704194206162023-10-30T15:52:00.001-07:002023-11-03T15:55:41.420-07:00RNS Placement - Days 11/12<p><span style="font-family: georgia;"> <span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Days 11/12 - needed this reminder today. </span></span></p><p><span style="font-family: georgia;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP6hyphenhypheniB6gnG6XC4Bq77Oze8BKxotipksbLfBCuYxPNAsK0nmLO8HOdBpyrMce9mudODjgM-uaA5iawVnb7zJof1Ml6fW_oxcqidBO5I7_ib1mfp5noVuWFxY8ZHnr4xgqRGcuBTapajFxFquvN31LQzdcYtjC7c3dLEUb0SQHtrpK71YzJpXkl_g/s960/IMG_1378.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="787" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP6hyphenhypheniB6gnG6XC4Bq77Oze8BKxotipksbLfBCuYxPNAsK0nmLO8HOdBpyrMce9mudODjgM-uaA5iawVnb7zJof1Ml6fW_oxcqidBO5I7_ib1mfp5noVuWFxY8ZHnr4xgqRGcuBTapajFxFquvN31LQzdcYtjC7c3dLEUb0SQHtrpK71YzJpXkl_g/s320/IMG_1378.JPG" width="262" /></a></span></div><span style="font-family: georgia;"><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Now that Jenelle’s pain is managed she is very happy. </span></span></p><p><span style="font-family: georgia;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzEeXaEorricPgzBlCXFjm2ZnI8y4h0A4lIBYPfVqAKbexpDYxKsxRpAy8WREyse3CCro6yzqPz0rk' class='b-hbp-video b-uploaded' frameborder='0'></iframe></span></div><span style="font-family: georgia;"><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Thank you for the continued thoughts and prayers. We see the doctors on Wednesday. </span></span></p><span style="font-family: georgia;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> #lennoxgastautsyndrome #lgs #neuropace #rnssystem #rns #epilepsy</span></span>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-56930696454399578962023-10-27T15:51:00.001-07:002023-11-03T15:52:46.180-07:00RNS Placement - Day 10<p> <span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; white-space-collapse: preserve;">It’s all my fault.</span></p><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; width: 16px;"><img alt="🤦🏼♀️" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t58/1.5/16/1f926_1f3fc_200d_2640.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span> </div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><br /></div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;">Day 10 - I spoke to Jenelle’s neurosurgeon and apparently she can have Tylenol every 4-6 hours. We’ve been giving it twice a day. Once in the morning and once at night. <span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; width: 16px;"><img alt="😞" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t7b/1.5/16/1f61e.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span> so after adjusting the Tylenol, Jenelle has a better day, but still cranky at times. Sometimes cranky even an hour after Tylenol, so we still don’t know. At least we know we can give more pain reliever.</div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><br /></div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;">Happy Friday! </div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><br /></div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;">#lennoxgastautsyndrome #lgs #epilepsy #rnssystem #neuropace</div>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-64842854051517860182023-10-26T15:50:00.001-07:002023-11-03T15:51:27.544-07:00RNS Placement - Day 9<p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Day 9 - another tough day. Jenelle had 2 doctor’s appointments. Endocrine and Cardiology. I thought her appointments were an hour apart but I was wrong, they were 2 hours apart. While waiting for our second appointment, Jenelle and I stopped by Floral Park to visit Aunt Nicki’s plaque. This is one of the few moments today when she wasn’t crying. </span></span></p><p><span style="font-family: georgia;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxqNxMupecCe1aSkLEUe_jZIZhl03dE02bcPFHZeRyyq9miNbxfre8DJBzrPWq2Yr3tObsGY6cp0mYmdz_H38r536ndPk1-xiCetQOXkR7qVhR-p8w4MlId5jtGZTznHY-weOzOyJTrwa77Q-1Vo6gCx7uGSBGs-3U2iMUw1XQZYdoAbn1-OUC_w/s1800/A908B098-6375-49B9-89BA-3419667469BE.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1800" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxqNxMupecCe1aSkLEUe_jZIZhl03dE02bcPFHZeRyyq9miNbxfre8DJBzrPWq2Yr3tObsGY6cp0mYmdz_H38r536ndPk1-xiCetQOXkR7qVhR-p8w4MlId5jtGZTznHY-weOzOyJTrwa77Q-1Vo6gCx7uGSBGs-3U2iMUw1XQZYdoAbn1-OUC_w/s320/A908B098-6375-49B9-89BA-3419667469BE.jpg" width="256" /></a></span></div><span style="font-family: georgia;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig4LYg8YWdypgpf34JBRJY7Ml30w8s_vzbgh6kz6M0nh5KM_-JCg1L-X72P96abdVyHJPBsSDp5Z8FQ1M_PSpbj3TWtS25Kc2Z94kWQMVVIQ1tUWups3pmVr4N-trBkCGWJS3D8Ea54RVw-Gv_r4m9qeD6TA7MjLOv3hyiqcLYAIcFjzGnH7TNWA/s1800/D32930A8-08D5-41F7-A83B-8ACF95FF3BEB.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1800" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig4LYg8YWdypgpf34JBRJY7Ml30w8s_vzbgh6kz6M0nh5KM_-JCg1L-X72P96abdVyHJPBsSDp5Z8FQ1M_PSpbj3TWtS25Kc2Z94kWQMVVIQ1tUWups3pmVr4N-trBkCGWJS3D8Ea54RVw-Gv_r4m9qeD6TA7MjLOv3hyiqcLYAIcFjzGnH7TNWA/s320/D32930A8-08D5-41F7-A83B-8ACF95FF3BEB.jpg" width="256" /></a></div><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span></p><span style="font-family: georgia;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="😞" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t7b/1.5/16/1f61e.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> #lennoxgastautsyndrome #lgs #rnssystem #neuropace #rns #epilepsy #specialneedskids</span></span>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-34643076140320026242023-10-25T15:48:00.001-07:002023-11-03T15:49:44.620-07:00RNS Placement - Day 7/8<p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Days 7/8 - I wish our happy girl would come back again. Last 2 days have been stressful. Jenelle is now experiencing bouts of crankiness and inconsolable crying. It’s not fun, especially when she can’t tell us what’s going on. Brett and I are exhausted. Our home nurse was here today… first day since before surgery because she was ill. She thinks Jenelle is just frustrated. Can’t imagine why? </span></span></p><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><span style="font-family: georgia;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; display: inline-flex; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; width: 16px;"><img alt="😏" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t5d/1.5/16/1f60f.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span>. In other news, neurosurgery called today and asked us to upload data <span style="animation-name: none !important; transition-property: none !important;"><a style="animation-name: none !important; color: #385898; cursor: pointer; transition-property: none !important;" tabindex="-1"></a></span>nightly. They think they have enough data to justify turning on the neurotransmitter at our post-op visit on 11/1. That would be amazing!</span></div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><span style="font-family: georgia;"><br /></span></div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><span style="font-family: georgia;">Please keep us in your good thoughts and prayers. <span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; display: inline-flex; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span> #lennoxgastautsyndrome #lgs #rnssystem #neuropace #rns #epilepsy #specialneedskids</span></div>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-57007875552850358662023-10-23T15:44:00.001-07:002023-11-03T15:48:29.503-07:00RNS Placement - Day 7 "Downloading Jenelle"<p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Day 7 - Jenelle had a better day today. We think some of the pain she complains about might actually be gas… due to the antibiotics and new formula. So I thought now would be a good time to explain our “homework” with the RNS. At her surgery, we were given a laptop with a wand to “download” the data from the device in her head. Each night I download the data, then we upload it to her doctor’s office every Sunday. Right now, the RNS is not turned on to deliver electrical </span><span style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><a style="animation-name: none !important; color: #385898; cursor: pointer; transition-property: none !important;" tabindex="-1"></a></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">stimulation, but rather to gather data similar to an EEG. After they have enough data, the doctor will turn on the RNS to best target her seizure areas. Pretty cool huh? </span></span></p><span style="font-family: georgia;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="🤓" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tc/1.5/16/1f913.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> enjoy the video.</span></span><div><span style="color: #050505; font-family: georgia;"><span style="font-size: 15px; white-space-collapse: preserve;"><br /></span></span></div><div><span style="color: #050505; font-family: georgia;"><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwEkK1TJcLqAE_i3po4yy1c8mp8GhrZSeiE-7WMUdKVOKHvAMhq-T6BPpfwKiEWdetZ6a_zq9I--C8' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><span style="font-size: 15px; white-space-collapse: preserve;"><br /></span></span><div><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span></div><div><span style="font-family: georgia;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqCT1hyphenhyphenU6C8tNhcWpeTV9IhfSqaioxMYHBnS6sFQsBeHLfQb8t_mdcUfKsg-eqisrOBaGbzZX-nbSa5E9EILpCjxwGuspQJlx2UmD4xkHPawIYysmrmBwVKZtE0bTW17J0GTUDNomVDqdZ9DEFaBF86io_rzRfGIqEG-uCNfWuifvIOeVr-ZJ4mg/s4032/IMG_1335.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqCT1hyphenhyphenU6C8tNhcWpeTV9IhfSqaioxMYHBnS6sFQsBeHLfQb8t_mdcUfKsg-eqisrOBaGbzZX-nbSa5E9EILpCjxwGuspQJlx2UmD4xkHPawIYysmrmBwVKZtE0bTW17J0GTUDNomVDqdZ9DEFaBF86io_rzRfGIqEG-uCNfWuifvIOeVr-ZJ4mg/s320/IMG_1335.HEIC" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJMaebDk6CNYKzMCM1duw_W4PjZa0GRqi_pjNslbE-2x_9noqa8vdb89hO5fDdxYwWedrvcJNoUdvUsP4ihyphenhyphenspOzUxwNTe3g7wKre6GeWgihCLj1iUvlvc3sZW1kgxjUFuccN7hPcS8RBhf907RzKQMaz6oD50V8hubuaYow19i6rsSiYzNQm6hg/s4032/IMG_1338.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJMaebDk6CNYKzMCM1duw_W4PjZa0GRqi_pjNslbE-2x_9noqa8vdb89hO5fDdxYwWedrvcJNoUdvUsP4ihyphenhyphenspOzUxwNTe3g7wKre6GeWgihCLj1iUvlvc3sZW1kgxjUFuccN7hPcS8RBhf907RzKQMaz6oD50V8hubuaYow19i6rsSiYzNQm6hg/s320/IMG_1338.HEIC" width="240" /></a></div><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span></div><div><span style="font-family: georgia;"><br /><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> #lennoxgastautsyndrome #lgs #rnssystem #neuropace #epilepsy #specialneedskids</span></span></div></div>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-30674085240754925142023-10-22T15:41:00.002-07:002023-11-03T15:44:04.715-07:00HAPPY BIRTHDAY and RNS Placement Day 6<p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Day 6 - Happy 21st Birthday Jenelle! </span></span></p><p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Recovery at home has been okay. Jenelle seems to be experiencing more pain, and swelling and is getting Tylenol more frequently. Her incisions look great and she sleeps well all night. We are taking it easy and trying to keep her comfortable. We uploaded the data from her device last night and we are learning how to collect it as well with the lap top. The handbook recommends that her RNS is not compatible with the use of stun guns or near jackhammers among other </span><span style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><a style="animation-name: none !important; color: #385898; cursor: pointer; transition-property: none !important;" tabindex="-1"></a></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">things.</span></span></p><p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Here is our cute new 21 year old - cute shirt from Aunt Norma and Uncle Dave!</span></span></p><p><span style="font-family: georgia;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrjj1RFn79FMLx49yi4CkCvtp2hgCfBd02FTnsLfXy8QB30DxeBipUu9drWF6bHvejiy5K_rfzZAujPZ3AfoBEhEdLWE5BYCdTQK2lXYI_2yRAMhpgs0Mqv_VnUWOllfm0csmwZuSG45lzN9CCOb-yO_NxoSHqBDmgSluP7vMAXM7RfbE2SW9TPw/s4032/IMG_1319.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrjj1RFn79FMLx49yi4CkCvtp2hgCfBd02FTnsLfXy8QB30DxeBipUu9drWF6bHvejiy5K_rfzZAujPZ3AfoBEhEdLWE5BYCdTQK2lXYI_2yRAMhpgs0Mqv_VnUWOllfm0csmwZuSG45lzN9CCOb-yO_NxoSHqBDmgSluP7vMAXM7RfbE2SW9TPw/s320/IMG_1319.HEIC" width="240" /></a></span></div><span style="font-family: georgia;"><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> Thank you for continued thoughts and prayers. Praying it gets easier for her every day! </span><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="🥰" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t43/1.5/16/1f970.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> #lennoxgastautsyndrome #lgs #rnssystem #neuropace</span></span>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-59897787230593342442023-10-21T15:39:00.000-07:002023-11-03T15:44:25.453-07:00RNS Placement - Day 4/5<p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Day 4/5 - we left the hospital last night and got home around 7:30. Jenelle slept well and got a cute haircut ala Mommy this morning. Now we rest and recover and keep our incisions clean! Thanks again for continuing thoughts and prayers! Happy Saturday! </span></span></p><p><span style="font-family: georgia;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmpSn5G_iEsGq7MgHQ8zt6fL2nScFtYk9VSNtyt3aHYuiPaYcljztWkzy3tLhHm-c3cCm9yMCYv6MEW0B3ZAUYbOvbk1ErWkiyKKt3K7rP_VxnrZ08n_VXzQSP3BhIyKe-oGcY_0fq27203CrLl5EM2RpqAcqNWf3XHsYi-uMkQOesl0Gmr0_9zg/s4032/IMG_1309.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmpSn5G_iEsGq7MgHQ8zt6fL2nScFtYk9VSNtyt3aHYuiPaYcljztWkzy3tLhHm-c3cCm9yMCYv6MEW0B3ZAUYbOvbk1ErWkiyKKt3K7rP_VxnrZ08n_VXzQSP3BhIyKe-oGcY_0fq27203CrLl5EM2RpqAcqNWf3XHsYi-uMkQOesl0Gmr0_9zg/s320/IMG_1309.HEIC" width="240" /></a></span></div><span style="font-family: georgia;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkIrJYekE49Qq_0pjzeWxOVqH7AHVHVS0E77-rRW7RG0DBR45h52kyWRmMPwvVv_1On9-nLNq-wYDFkUnKELFBktlP68hFwWq6IHIwqIvynzITun9UkkeuYi5MO4ZRqDEzWpdFQ6wmMim3YjSFcO5n-F20izaShT_K20MJh5Qm0OJvDHBGpZXqYQ/s4032/71959883149__F991760F-1BDD-4C00-882A-3D5145744B9D.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkIrJYekE49Qq_0pjzeWxOVqH7AHVHVS0E77-rRW7RG0DBR45h52kyWRmMPwvVv_1On9-nLNq-wYDFkUnKELFBktlP68hFwWq6IHIwqIvynzITun9UkkeuYi5MO4ZRqDEzWpdFQ6wmMim3YjSFcO5n-F20izaShT_K20MJh5Qm0OJvDHBGpZXqYQ/s320/71959883149__F991760F-1BDD-4C00-882A-3D5145744B9D.HEIC" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0sEbgUtz1dPYLUBJbnwpakhg-2B5CrHHmq7YS3N1A2_ysy5CrdG-Y1YyH6kGakJ4E3y5eSYtzgIuFX8M1A_Ma_uPxJ6z88BihudyOdysYY3mU-XUlYKfIrNpicM7jqTCKoXl31SCzpcXFPE_4UwHE3L9-oVzYZTt011uz2H15F4TfRlqOq1DVNg/s3088/IMG_1312.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2316" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0sEbgUtz1dPYLUBJbnwpakhg-2B5CrHHmq7YS3N1A2_ysy5CrdG-Y1YyH6kGakJ4E3y5eSYtzgIuFX8M1A_Ma_uPxJ6z88BihudyOdysYY3mU-XUlYKfIrNpicM7jqTCKoXl31SCzpcXFPE_4UwHE3L9-oVzYZTt011uz2H15F4TfRlqOq1DVNg/s320/IMG_1312.HEIC" width="240" /></a></div><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span></p><span style="font-family: georgia;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="🥰" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t43/1.5/16/1f970.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> #lennoxgastautsyndrome #rnssystem #neuropace #epilepsy #specialneedskids</span></span>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-48689667290373674912023-10-20T15:36:00.001-07:002023-11-03T15:37:46.103-07:00RNS Placement - Day 4<p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Day 4 - a couple of set backs today, but we are still on schedule to go home tonight. Jenelle has been doing very well pain wise, is tolerating food and acting more like herself. The only thing keeping us here is to finish IV antibiotics (Vancomycin). On Day 2 when we moved from the PICU to 5th floor, her IV blew causing a delay in meds. Well we were hoping to be home this morning, but Jenelle’s second IV did not want to cooperate today (and blew) so we got a new one. The </span><span style="animation-name: none !important; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><a style="animation-name: none !important; color: #385898; cursor: pointer; transition-property: none !important;" tabindex="-1"></a></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">new IV location is a bit tricky, right near her elbow, so when she bends her arm, the IV colludes. We are just now on the last hour of the last dose with discharge papers in hand.</span></span></p><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><span style="font-family: georgia;">Jenelle also has some swelling today which is not unusual for day 3 post surgery. We got to change her head bandages and see her incisions, but I’ll spare you from the photos! Thanks for the continued thoughts and prayers! </span></div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><span style="font-family: georgia;"><br /></span></div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_yb0q8vc-RAfJREJYVgc3PllAR7AOgNTj-bBVpqijqJ2FjHXW5b_nZxzt3RXNCPayVa46cI18YRuLKuoOscvpLiq5oIgs7kh8Z70DbnQmRoF5uM9IF15b_01QSJA2baLTJJaIsj9IN7wZlS090zcIGDDqhmPuM63STWPfB0mtwx_bHQm9jJgPJA/s4032/IMG_1299.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_yb0q8vc-RAfJREJYVgc3PllAR7AOgNTj-bBVpqijqJ2FjHXW5b_nZxzt3RXNCPayVa46cI18YRuLKuoOscvpLiq5oIgs7kh8Z70DbnQmRoF5uM9IF15b_01QSJA2baLTJJaIsj9IN7wZlS090zcIGDDqhmPuM63STWPfB0mtwx_bHQm9jJgPJA/s320/IMG_1299.HEIC" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheyaLeqXQm-yNGOjH35x5RFys_z5QYS2TMnvaaFdrAXpWPGxf6HKC1UkfAz18xiYHeq2T4IYrNxqxtUaTuEaeiHfooZRsAPyRRF1Bjd4gNklE4YQHbuPA5Uu4PAhaq1VLWwm5Fb-xHOYAymzlN2YjQyNwvx_B5yXWiMsTlxHK0kqf7YwpS0GawqQ/s4032/IMG_1303.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheyaLeqXQm-yNGOjH35x5RFys_z5QYS2TMnvaaFdrAXpWPGxf6HKC1UkfAz18xiYHeq2T4IYrNxqxtUaTuEaeiHfooZRsAPyRRF1Bjd4gNklE4YQHbuPA5Uu4PAhaq1VLWwm5Fb-xHOYAymzlN2YjQyNwvx_B5yXWiMsTlxHK0kqf7YwpS0GawqQ/s320/IMG_1303.HEIC" width="240" /></a></div><br /><span style="font-family: georgia;"><br /></span></div><div dir="auto" style="animation-name: none !important; background-color: white; color: #050505; font-size: 15px; transition-property: none !important; white-space-collapse: preserve;"><span style="font-family: georgia;"><br /><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; display: inline-flex; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span>#lennoxgastautsyndrome #rnssystem #neuropace #specialneeds</span></div>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-72047656457342704932023-10-19T15:34:00.001-07:002023-11-03T15:35:58.880-07:00RNS Placement - Day 3<p> <span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; white-space-collapse: preserve;">Day 3 - all good! Jenelle is in great spirits as you can see from the smiles. Slept all night and is only taking Tylenol as needed for pain. We get to go home tomorrow after her last dose of antibiotics! Yay! Thank you for the continued prayers and positive thoughts! </span></p><p><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; white-space-collapse: preserve;"><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj41RXbHXQWRVvWsftwgbjtfL_LxaI50A1E3qeK4hYiLtRFxEXAUwgnKrZtImTi2trCNPTZcyCMfIIaKV4cn7U_Lp1Vcqn_FrpjFvQUiSE60I9lRCPSoAmBYZDv52qL7HxOsOBpwm30_BxqudOIk6n4WXsy9c6RBH6tI6YmnAtGgbbAAc4vf1gIYw/s4032/IMG_1294.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj41RXbHXQWRVvWsftwgbjtfL_LxaI50A1E3qeK4hYiLtRFxEXAUwgnKrZtImTi2trCNPTZcyCMfIIaKV4cn7U_Lp1Vcqn_FrpjFvQUiSE60I9lRCPSoAmBYZDv52qL7HxOsOBpwm30_BxqudOIk6n4WXsy9c6RBH6tI6YmnAtGgbbAAc4vf1gIYw/s320/IMG_1294.HEIC" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-SR9TrtZkSYQ9lPuzwvfnw8mTfKV2MDDuxtB5iOwL8AfFjZ68ALyEYPKozrBaZCqkKPBWK4yHn7Y8Gmpag2IzFUHv2wTGadIbgMQjXyKDvCSWL1uqwCx0qlnsUmt9r0y50OoGVup4KsGqdkek17-oR9sqOyJ7dyNr8I_sddi91aSUxlnR79mwjA/s4032/IMG_1292.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-SR9TrtZkSYQ9lPuzwvfnw8mTfKV2MDDuxtB5iOwL8AfFjZ68ALyEYPKozrBaZCqkKPBWK4yHn7Y8Gmpag2IzFUHv2wTGadIbgMQjXyKDvCSWL1uqwCx0qlnsUmt9r0y50OoGVup4KsGqdkek17-oR9sqOyJ7dyNr8I_sddi91aSUxlnR79mwjA/s320/IMG_1292.HEIC" width="240" /></a></div><br /><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; white-space-collapse: preserve;"><br /></span><p></p><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none !important; background-color: white; color: #050505; display: inline-flex; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none !important; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none !important; border: 0px; object-fit: fill; transition-property: none !important;" width="16" /></span><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; white-space-collapse: preserve;"> #lennoxgastautsyndrome #neuropace #rnssystem #epilepsy #specialneeds</span><div><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; white-space-collapse: preserve;"><br /></span></div><div><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; white-space-collapse: preserve;"><br /></span></div>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-41027851315254272462023-10-18T15:33:00.003-07:002023-11-03T15:40:55.407-07:00RNS Placement - Day 2<p> <span face=""Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif" style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">Day 2 at Spa CHOC! Jenelle has been very calm and comfortable today. Didn’t sleep much last night so we are hoping for a better night. We graduated from the PICU to the 5th floor and we’ve settled in just fine. Thank you for the continued prayers! </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6zsgJyQPEH2FSepBXNzXIsioHwqSEmCjZZ7EAymVV-DsonHuebD3Lc_poKtBHmfaeaACGEbOz483Lxia9QpR-4a3Ko928bWvcSVaaMeuI6Y1uAXKE5Tc_gTbdOh65t3Oh7UhbXCHUYXF2a8a0tGFNjhcIcP1V_WUUuxzb1k-b1q3XfWtZW5fUGg/s3088/IMG_1287.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2316" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6zsgJyQPEH2FSepBXNzXIsioHwqSEmCjZZ7EAymVV-DsonHuebD3Lc_poKtBHmfaeaACGEbOz483Lxia9QpR-4a3Ko928bWvcSVaaMeuI6Y1uAXKE5Tc_gTbdOh65t3Oh7UhbXCHUYXF2a8a0tGFNjhcIcP1V_WUUuxzb1k-b1q3XfWtZW5fUGg/s320/IMG_1287.HEIC" width="240" /></a></div><br /><span face=""Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif" style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span><p></p><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" face=""Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif" style="animation-name: none; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="💜" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tef/1.5/16/1f49c.png" style="animation-name: none; border: 0px; object-fit: fill; transition-property: none;" width="16" /></span><span face=""Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif" style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> #lennoxgastautsyndrome #neuropace #rnssystem #epilepsy #specialneeds</span>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-84854813028674974872023-10-17T15:30:00.003-07:002023-11-03T15:39:50.655-07:00Surgery Day!<p><span style="font-family: georgia;"><span style="background-color: white;">S</span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;">urgery today to place the RNS went very well and the neurologist “was giddy and geeked out excitedly” about the perfect placement of the probes! We are in the PICU tonight and Jenelle is mellow but awake! Lots of new things to learn! Thank you for the continued thoughts and prayers! </span></span></p><p><span style="font-family: georgia;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLzvPw744Ik3zEjWSKvTdOWXFa3-TQJ6W6jg7-1tOoP6G4FGvfBgMtX9vmMn2RR-ws1FltzWxjoh5-8eIGnhhYb0t9Rmwsw88ykgOqarBapjFHltFnbdtNSltYOJFuDbWPOuR2BecRE1-xIzsRIbW1wwYDw478wZBltAej0oV4qB83FF86Tru6iw/s4032/IMG_1273.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLzvPw744Ik3zEjWSKvTdOWXFa3-TQJ6W6jg7-1tOoP6G4FGvfBgMtX9vmMn2RR-ws1FltzWxjoh5-8eIGnhhYb0t9Rmwsw88ykgOqarBapjFHltFnbdtNSltYOJFuDbWPOuR2BecRE1-xIzsRIbW1wwYDw478wZBltAej0oV4qB83FF86Tru6iw/s320/IMG_1273.HEIC" width="240" /></a></span></div><span style="font-family: georgia;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_-gSLE7rAhOjXkyIgsq0VXZ9EcDqRQZCUGyr5pZwhxGj63mS_poKHzmzF1DGcuvyhQXp6QKGj-WnRwU4KjF8qJbWThU3gvPLZXw7t6Ku5nH5bvLN7PK3Zox3hVm27UwfDM8BxCKi5amKcCLHAWQIJBMWhYfd0h5tGmapfknHuCgTeL_WvCzRBqQ/s4032/IMG_1275.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_-gSLE7rAhOjXkyIgsq0VXZ9EcDqRQZCUGyr5pZwhxGj63mS_poKHzmzF1DGcuvyhQXp6QKGj-WnRwU4KjF8qJbWThU3gvPLZXw7t6Ku5nH5bvLN7PK3Zox3hVm27UwfDM8BxCKi5amKcCLHAWQIJBMWhYfd0h5tGmapfknHuCgTeL_WvCzRBqQ/s320/IMG_1275.HEIC" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSWbFyXen04ZrWjUO9DI_0w1wm26sEfuhDgjKfUgw1OARwby8so-rZ35CUjQeVA4gRYKPvdcNBouwq_xLmCSLrFrngWngOts1Hzpehw_KJlj3h5hyphenhyphen1zD2PSfE1z2bSf_9HLH8K-LDbghZbP3EON53nz-RycWmBv_5Wbn0kBCIX9jzWz28L9AgtZQ/s4032/IMG_1277.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSWbFyXen04ZrWjUO9DI_0w1wm26sEfuhDgjKfUgw1OARwby8so-rZ35CUjQeVA4gRYKPvdcNBouwq_xLmCSLrFrngWngOts1Hzpehw_KJlj3h5hyphenhyphen1zD2PSfE1z2bSf_9HLH8K-LDbghZbP3EON53nz-RycWmBv_5Wbn0kBCIX9jzWz28L9AgtZQ/s320/IMG_1277.HEIC" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJMDCDDGp0XVDxTWfvZRfUXoeW5tPbvPtMFIFhhIB_2H-XKXZpJc_vuqdV4u9ZMKrvK5afNj0Y6I3fUl2CDHTE8G_pmjurA85YNm4ar7x1i7odVETcGp5iZVuJrGBOKTFS2PCJtfsLkS74zoUkzhjNom0y_OSmd178FggAVcxp46_v1dHBWGzFEg/s4032/IMG_1284.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJMDCDDGp0XVDxTWfvZRfUXoeW5tPbvPtMFIFhhIB_2H-XKXZpJc_vuqdV4u9ZMKrvK5afNj0Y6I3fUl2CDHTE8G_pmjurA85YNm4ar7x1i7odVETcGp5iZVuJrGBOKTFS2PCJtfsLkS74zoUkzhjNom0y_OSmd178FggAVcxp46_v1dHBWGzFEg/s320/IMG_1284.HEIC" width="240" /></a></div><br /><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span><p></p><p><span style="font-family: georgia;"><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"><br /></span></span></p><span style="font-family: georgia;"><span class="x3nfvp2 x1j61x8r x1fcty0u xdj266r xhhsvwb xat24cr xgzva0m xxymvpz xlup9mm x1kky2od" style="animation-name: none; background-color: white; color: #050505; display: inline-flex; font-size: 15px; height: 16px; margin: 0px 1px; transition-property: none; vertical-align: middle; white-space-collapse: preserve; width: 16px;"><img alt="❤️" class="xz74otr" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tf3/1.5/16/2764.png" style="animation-name: none; border: 0px; object-fit: fill; transition-property: none;" width="16" /></span><span style="background-color: white; color: #050505; font-size: 15px; white-space-collapse: preserve;"> #lennoxgastautsyndrome #epilepsy #neuropace #rnssystem #specialneedskids</span></span>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-88366907624804450362023-10-16T16:32:00.000-07:002023-10-16T16:32:07.606-07:00Tuesday is the Big Day!<p>Tomorrow, October 17, is the surgery for the final placement of Jenelle's RNS Device. In pre-op meetings with the doctor, they reitterated that they were confident with the data they got from the SEEG that they will permanently place the probes in the best place for feedback and treatment of Jenelle's seizures (that is the central medium area of the thalamus.)</p><p>Because I've been talking and posting so much about the RNS, I've had quite a few ads on my personal social media pages about the system. This <a href="https://www.neuropace.com/patients/neuropace-rns-system/" target="_blank">website from Neuropace</a> is well written and explains things easily. </p><p>After the surgery tomorrow, Jenelle will remain in the hospital for a few days for pain management and to make sure her incision is healing. We hope to be home by Friday. The next step is that Dr. Steenari will "monitor" the information she gets from device. I'll know more when we meet with the representative for Neuropace, but its likely we will be given a lap top, or similar device to download weekly readings and send to Dr. Steenari. After some time, we will meet again for Dr. Steenari to program and turn on the RNS. The usual time will take 3 months of data, but Dr. Steenari believes with the frequency of Jenelle's daily seizures, it may only take a few weeks to get enough data. The benefits of the RNS include providing immediate data to Jenelle's doctor about where and how her seizures are presenting, how frequently, and how she responds. With that information, the doctor will determine how to program the settings for the electric stimulation used to stop her seizures.</p><p>We hope this new technology will help Jenelle have fewer seizures a day, without the side effects of medication. Also, the RNS helps to lower to rate of SUDEP (Sudden Unexpected Death of Someone With Epilepsy.) The mortality rate of patients with Lennox Gastaut Syndrome is 5%, with LGS patients 24% more likely to die of SUDEP. Right now, Jenelle is averaging 5 or more seizures a day, with 1 of those daily seizures being tonic clonic (grand mal) usually lasting 2 minutes or more.</p><p>We are very hopeful, and very anxious that the surgery goes well tomorrow. Please keep us in your thoughts and prayer and I will keep you posted!</p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-37328559634373968742023-09-16T15:15:00.005-07:002023-09-16T15:15:50.294-07:00Stereographic EEG - Done!<p> <span style="font-size: 12pt;">Jenelle is amazing and did fantastic last week while in hospital for her Stereographic EEG (SEEG). </span></p><p class="MsoNormal"><span style="font-size: 12pt;">We arrived for surgery on Tuesday, September 5 at 5:00 AM. Jenelle went into surgery around 7:30 A.M. for an anticipated 5 hour surgery. Dr. Olaya, her surgeon, explained that they would sedate Jenelle, place her into a "HALO" and then perform a CT Scan to make sure they had the exact location for where they were going to have a robot place 4 needle like probes into the Thalamus and Central Medium of her brain to track where
her seizures were coming from. An SEEG is also sometimes referred to as “brain mapping.” </span></p><p class="MsoNormal"><span style="font-size: 12pt;">Miraculously, surgery only lasted about 4 hours, and we met Jenelle in the Post Anesthesia Care Unit where she was already awake when we got there. While her pain was managed, she was very frustrated. Because she had "probes" sticking into her brain, they placed mittens/boxing gloves on Jenelle's hands to keep her from getting too close to the probes to pull them out. One of Jenelle's behavioral habits is to keep her hands at the nape of her neck, and ofter to pull on her hair. Needless to say, she was not happy.</span></p><p class="MsoNormal"><span face=""Arial Narrow",sans-serif" style="font-size: 12pt;">Jenelle was hooked up to the recording device for 3 days. In all, we recorded at least one of all 3 of her different types of seizures. Tonic, Head Drop and Tonic/Clonic (aka Grand Mal), with a 3 minute Tonic Clonic
seconds before the Epilepsy Monitoring Unit was about to disconnect the
recorder! Her Neurologist is very pleased and said that from the seizures
they caught, they see that her seizures begin in the Central Medium and often
start on the left side her brain. Originally the Neuro thought
Thalamus, so this is huge as if we had not done the SEEG, we likely would have
interested the permanent probes in the wrong part of her brain.</span></p>
<p class="MsoNormal"><span face=""Arial Narrow",sans-serif" style="font-size: 12pt;">Jenelle
had 2 surgeries – one to place the probes and one to remove them. She had a
bit of pain, and a lot of frustration because of the mittens/boxing gloves
on her hands. Because of the probes inserted into the brain, we had a "Sitter" sitting beside her bed the entire time to make sure she didn't try to remove them. She seemed to have more pain with the second surgery and needed Morphine that night to sleep. Since being home, she needed Tylenol
the first day and has been fine without. We eventually got home late Saturday afternoon.</span></p><p class="MsoNormal"><span face=""Arial Narrow",sans-serif" style="font-size: 12pt;">The first few days after the probes were removed, she was pretty weak, likely from being in bed for 5 days. when she walks which is likely from being in
bed for a week. Once home She recovered pretty quickly and was playing with her favorite toys. Jenelle went back to school on Wednesday, and we are told was very happy to see her friends. </span></p>
<p class="MsoNormal"><span face=""Arial Narrow",sans-serif" style="font-size: 12pt;">The
next surgery will be in about 3-4 weeks to place the permanent RNS (Responsive
Neuro Stimulator.) That recovery time should be about the same, assuming
she does just as well in recovery and just in time for her 21<sup>st</sup>
birthday! When we know more about that date, I will let you know. For now, we are just enjoying being home, eating food that isn't fast or from the hospital and getting our girl back on her routine.</span></p><p class="MsoNormal">Thank you all for the continued prayers and positive thoughts. As always, I'll keep you posted!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHOf20cygD9AccnOwIZR1pvY3wrl48hNa907vNafb_Yo8nE8WckJaXczwofAEpd_qrIIOGw5LtDmEsZDhvsl2MKR3YGogJ9AeOl0Yqsx2BX2wZpIRQep-22IxiEgtcYAI7fXhZGZRMjvAqZLSHOcqxJLpYqda9O5dkfcmiF0HnKFLTNL9UL_iVGg/s640/IMG_1082.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHOf20cygD9AccnOwIZR1pvY3wrl48hNa907vNafb_Yo8nE8WckJaXczwofAEpd_qrIIOGw5LtDmEsZDhvsl2MKR3YGogJ9AeOl0Yqsx2BX2wZpIRQep-22IxiEgtcYAI7fXhZGZRMjvAqZLSHOcqxJLpYqda9O5dkfcmiF0HnKFLTNL9UL_iVGg/s320/IMG_1082.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">5:00 AM -What is going on?<br /></td></tr></tbody></table></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOFj36jfiBpR5tRA1EQ7hbkme2-U7dv1xYkc83IJlJ20hjD3mdjGR2FOmlwEPhkTqfjUMr6nN488EmSJ4oJ9zHPGIdCMtAVoD6H9WfdatVE5noisvvBYTqOdPO-yB6Gw_T_3zHegx2S_OTXR8njYhTMVFZGebZeTq2hK_QELG92uGOirPpWftEVQ/s640/IMG_1083.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOFj36jfiBpR5tRA1EQ7hbkme2-U7dv1xYkc83IJlJ20hjD3mdjGR2FOmlwEPhkTqfjUMr6nN488EmSJ4oJ9zHPGIdCMtAVoD6H9WfdatVE5noisvvBYTqOdPO-yB6Gw_T_3zHegx2S_OTXR8njYhTMVFZGebZeTq2hK_QELG92uGOirPpWftEVQ/s320/IMG_1083.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">After 1st surgery with a Luigi Mario Cart cap protecting the probes.</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO5ZfUJ36dOYGrBOg3RbJZpWvxz5u3TOhfkQmHmdXW-U44W3q-zxODAj7VHU45QZHTh7igtwy7IRzzuaKRrVj9fUoSkdWd6GFtRta0G-xWz69syfOwW7RPk29Nr_jMLmG0eEqJC-XXGldVnCAM6Hyej9De-XSRtbUWGLYLecQetlG_R6P-XiGmQw/s640/IMG_1091.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO5ZfUJ36dOYGrBOg3RbJZpWvxz5u3TOhfkQmHmdXW-U44W3q-zxODAj7VHU45QZHTh7igtwy7IRzzuaKRrVj9fUoSkdWd6GFtRta0G-xWz69syfOwW7RPk29Nr_jMLmG0eEqJC-XXGldVnCAM6Hyej9De-XSRtbUWGLYLecQetlG_R6P-XiGmQw/s320/IMG_1091.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Moving from PICU to 5th Floor.<br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie2Rk6z9OEkE0-dn6VorLHCptm-qbmwoAQSnhnYjlHytGH1PfdMvrZsdDpO_es1w94hvHy3AkXp--sKV6E3Cx5eP6KHxz1gyhNvcHk1P-qAocFT28HJ_ZoJ9uInO3XhxpTgoqX6IhzSZ9lWLNBvvv9a04iPolmeF4T3ljNhzxaVLStUP99q-lkSA/s640/4AECBF13-ABD7-411B-9267-745F2EEABA91.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie2Rk6z9OEkE0-dn6VorLHCptm-qbmwoAQSnhnYjlHytGH1PfdMvrZsdDpO_es1w94hvHy3AkXp--sKV6E3Cx5eP6KHxz1gyhNvcHk1P-qAocFT28HJ_ZoJ9uInO3XhxpTgoqX6IhzSZ9lWLNBvvv9a04iPolmeF4T3ljNhzxaVLStUP99q-lkSA/s320/4AECBF13-ABD7-411B-9267-745F2EEABA91.JPG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Sweet moments with Daddy!</td></tr></tbody></table></td></tr><tr></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxEHSsqBGZdQvDDesAC_PueDuesEIclOOQRoxyR8GDCPaWcFbb5uOexpOfhOH-_AdPVAFs6gecpWce7iNxWXNQYheVcw-ZQdtH0300iXwVIFWt0BYfagqO-ToskvKhOtwwhBibo7dIgLtBbPVhYhb0CRA7AACPkEmreaWzAwM8IMEz9Rd6kpZf2A/s640/18CD9F9F-E8AF-4396-879F-D9E4DD7E900C.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="639" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxEHSsqBGZdQvDDesAC_PueDuesEIclOOQRoxyR8GDCPaWcFbb5uOexpOfhOH-_AdPVAFs6gecpWce7iNxWXNQYheVcw-ZQdtH0300iXwVIFWt0BYfagqO-ToskvKhOtwwhBibo7dIgLtBbPVhYhb0CRA7AACPkEmreaWzAwM8IMEz9Rd6kpZf2A/s320/18CD9F9F-E8AF-4396-879F-D9E4DD7E900C.JPG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Waking up after 2nd surgery - Messy Hair, don't care!<br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNgdU-6mGSboT-AIV7sKNMWCXB5KYSZZDePC_Z76t8RXEXti6qRnkHROagdZAaUtijp7Ypp_2cyM0vhGr14JeCNxgb3BW-yCVxGB37wNTHh-swC7WKRkIKHcFW09nF5qT1hzyGcSKfzKZAPkBFB_xIUo_SGqWisd2plYv6A0S5VzNehv8IxaIgog/s1125/DB02CA66-F421-4745-9314-200799668D77.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1125" data-original-width="900" height="380" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNgdU-6mGSboT-AIV7sKNMWCXB5KYSZZDePC_Z76t8RXEXti6qRnkHROagdZAaUtijp7Ypp_2cyM0vhGr14JeCNxgb3BW-yCVxGB37wNTHh-swC7WKRkIKHcFW09nF5qT1hzyGcSKfzKZAPkBFB_xIUo_SGqWisd2plYv6A0S5VzNehv8IxaIgog/w304-h380/DB02CA66-F421-4745-9314-200799668D77.JPG" width="304" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">And after 4 days at home, back to school!</td></tr></tbody></table></td></tr></tbody></table><br />Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-68513275961198627442023-08-17T13:31:00.003-07:002023-08-17T13:31:47.248-07:00Ready... Set... GO!<p>Lots of things are in motion and I feel if I don't update now, I'll never catch up. Jenelle has not been doing well at all this summer since starting Xcopri. Lots of increased seizures, including new seizure types (tonic/clonic aka grand mal) and disturbing new behaviors. Originally, we were scheduled to have the "Pre-Op" meeting on August 22, and scheduled the <a href="https://en.wikipedia.org/wiki/Stereoelectroencephalography" target="_blank">Stereo EEG</a> for September 5. Instead, we met on Tuesday (8/15) with Jenelle's Neurologist, Dr. Steenari and Neurosurgeon, Dr. Olaya. Given Jenelle's increased seizures, they moved up the Pre Op appointment in order to discuss everything. At the meeting, the team presented us with an option of keeping the Stereo EEG appointment, or just do surgery on that date to insert the <a href="https://www.epilepsy.com/treatment/devices/responsive-neurostimulation" target="_blank">RNS</a> device. </p><p>Here is the reasoning for this option. The seizures that present with Lennox Gastaut Syndrom (LGS) are believed to begin deep within the brain - often in the area of the <a href="https://en.wikipedia.org/wiki/Thalamus" target="_blank">Thalamus.</a> So, we could choose to add extra time by doing the Stereo EEG first, giving the doctors a better idea of where to place the leads for the RNS, or just inserting the RNS blindly, but in the vicinity of the Thalamus. I was ready to get it over with and just insert the RNS, but Brett had some rather good questions, and changed my mind. </p><p>If they simply insert the RNS blindly, and there is a chance that it doesn't help, and they have to do another surgery to re-insert more probes. Our main reason for not wanting to proceed with the <a href="https://www.webmd.com/epilepsy/corpus-callosotomy" target="_blank">Corpus Callosotomy</a> surgery that is recommended is because it would be "cutting" brain tissue, without exactly knowing if it is the right thing to do. Brett felt simply inserting the RNS without the Stero EEG would be doing the exact same thing. He's right! (He'll love me for saying that!)</p><p>So, Jenelle is scheduled to be admitted to CHOC hospital on September 5 for the Stereo EEG procedure. She will be in hospital for a minimum of 3 days, and possibly as long as 10 days or more. We will be there as long as it is necessary to get the information the doctors need in order to know where to place the RNS probes. With Jenelle being so unstable of late, we are betting on a short stay, and keeping fingers crossed.</p><p>After the Stereo EEG, Jenelle will go home, and can return to school. They will allow her to "heal" for a couple of weeks, while they review the data. Then, depending on timing, Jenelle will be re-admitted to CHOC for the placement of the RNS. That surgery will likely be in late September, first week of October.</p><p>We are really excited that we are going with the RNS device because we learned that there is a new study going on of LGS patients and the RNS device. Now that we are doing the Stereo EEG first, it is possible that Dr. Steenari will have time to submit Jenelle's case to see if she can be included in that study so her outcome can help other patients newly diagnosed with LGS.</p><p>Scary and exciting times. Please keep us in your thoughts and prayers and I will of course update here.</p><p>Yesterday, Jenelle started the first day of Year 15 at Tustin High School. She seemed to be very excited to return and see teachers and friends. I worked from home to stay close to school in case anything happened, and got a call from Radiology to scheduled an MRI for Jenelle. Given that we just saw the team the day before, we were puzzled. Turns out, they had a cancellation and Dr. Olaya needs another MRI before the 5th in order to help him place the Stereo EEG probes. I had to pick her up from school and take her to his office so they could turn off the VNS in order to get the MRI. Jenelle missed out on her bus ride home that she always enjoys. This morning, we left at 6AM for another sedated MRI. Jenelle did very well and we are home. </p><p>Here are some photos of the first day of school and of us checking in for the MRI at 6AM today. </p><p>Thank you for continued prayers - I promise to keep you posted!</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDdZhdP_IIRiRGoAkvUrkgKgatO0HNJHeirpMqUTy8bHHlipR1Vr4kdGZ5Fs11x7hUJPpzw3EzaZQjG1G1dKcouJCL4f5fztG_e4VjIAuC9agYXrwOfc20-QzxqPtio2T3cRgphKtuD69Sh5zpgZj_VzPAOC_GKVjdIQv1Rr8bGPqO5xBHyGkODQ/s320/IMG_1024.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="320" data-original-width="240" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDdZhdP_IIRiRGoAkvUrkgKgatO0HNJHeirpMqUTy8bHHlipR1Vr4kdGZ5Fs11x7hUJPpzw3EzaZQjG1G1dKcouJCL4f5fztG_e4VjIAuC9agYXrwOfc20-QzxqPtio2T3cRgphKtuD69Sh5zpgZj_VzPAOC_GKVjdIQv1Rr8bGPqO5xBHyGkODQ/w240-h320/IMG_1024.jpg" title="First Day - Year 15" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">First Day - Year 15</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr-f4oe14UsCDLqD87Ae3jvlF8tscTWlKnoVkfq6Y3qPoAayeAAoX-ad3PUAnvWLJh7w8zzMbBdF-WN7hdnMUD2YYPhixy7E80dxN542Bq4-15ZDMnOzzVtDL11uuhXoepfsou6S9Bhqxte2w_uGEmLy4QiTM-MNlN8GeZL0-r5d2uLgqysAP1kw/s320/IMG_1025%20(1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="320" data-original-width="240" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr-f4oe14UsCDLqD87Ae3jvlF8tscTWlKnoVkfq6Y3qPoAayeAAoX-ad3PUAnvWLJh7w8zzMbBdF-WN7hdnMUD2YYPhixy7E80dxN542Bq4-15ZDMnOzzVtDL11uuhXoepfsou6S9Bhqxte2w_uGEmLy4QiTM-MNlN8GeZL0-r5d2uLgqysAP1kw/s1600/IMG_1025%20(1).jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Jenelle's bus driver and aide</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfY24hD_W0KvHBeXZ_m98XpG4zEhTNsOANkhjM3lDsPx5Qo2Sc6B4v_KAVVoBwXibmdG9Gh2as-V0N1fCFuVDH2bYEPnGRJr9g-FgpCmu2W9iI0v0SS77oAMrUIagQZCZL9UJz2gVlRtoKmnNWHcLaGm9GW7galo4C8bsR4L7VSPUnb2_3Uu_ByA/s320/IMG_1029.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="320" data-original-width="240" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfY24hD_W0KvHBeXZ_m98XpG4zEhTNsOANkhjM3lDsPx5Qo2Sc6B4v_KAVVoBwXibmdG9Gh2as-V0N1fCFuVDH2bYEPnGRJr9g-FgpCmu2W9iI0v0SS77oAMrUIagQZCZL9UJz2gVlRtoKmnNWHcLaGm9GW7galo4C8bsR4L7VSPUnb2_3Uu_ByA/s1600/IMG_1029.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Too early for MRI check in!</td></tr></tbody></table><br /><p><br /></p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-33505319148823588062023-06-29T20:16:00.003-07:002023-08-17T13:32:12.984-07:00"Extreme Caregiving" and Jenelle update<p><span style="font-family: trebuchet;">I belong to an online support groups of Special Needs Moms called <a href="http://wearebravetogether.org" target="_blank">"We Are Brave Together."</a> WABT is one of many support groups that I belong to for special needs. The WABT community includes Moms (women only) of children with varying types and degrees of disabilities. It offers gatherings (in person and online), podcasts, blogs, resources, retreats, etc. When you belong to a support group that casts a very, very wide net of community members, you start to try to find others with a similar situation. And when you have a child with the medical complexity like Jenelle's, you often don't feel like you fit in. That was until I read the blog entry at WATB on June 15 <a href="https://www.wearebravetogether.org/blog/great-expectations-in-the-secret-world-of-autism-n4nye-y5ebs-w4xcb-tjbc4-ak3xe-za25r-b6s8w-6z2zm" target="_blank">written by Billie Short entitled "Extreme Caregiving Influences Our Choices."</a> </span></p><p><span style="font-family: trebuchet;">Billie gives us the definition from </span><span style="font-family: "Times New Roman", serif; font-size: 11.5pt;">Lisa Freitag, the author of <i>Extreme Caregiving:
The Moral Work of Raising Children with Special Needs, </i>(a book that is definitely now on my reading list!)</span></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><p style="text-align: left;"><span style="font-family: "Times New Roman", serif; font-size: 11.5pt;"><i> </i>“Extreme
caregiving involves the taking on of professional medical roles by a
nonprofessional parent. It differs from both ordinary parenting and
professional caregiving in that it is done in the home, often without respite
or foreseeable endpoint. Unlike professional caregiving, it involves an
intensely personal relationship between parent and child.”</span><span style="font-family: trebuchet;"> </span></p></blockquote><p><span style="font-family: trebuchet;">Wow. I really couldn't have described it quite that well on my own. Brett and I are "Extreme Caregivers" to Jenelle, or as I like to say, we are "Parenting to the Extreme." </span></p><p><span style="font-family: trebuchet;">The role of "caregiver" took on new meaning for me when we moved my Mom (Nana) to Orange County in 2018. I was used to being Jenelle's caregiver and in comparison, had it pretty easy because Jenelle doesn't talk, works around my schedule and goes whereever and whenever I decide to take her. Well Mom was an adult, albeit an aging adult keenly aware of her failing memory and agility. We had to find new doctors for Mom, then find the time to attend Mom's appointments and allow Mom to listen to her doctors and have an opinion about her care - it was a huge change for me. I soon realized that dealing with elderly parents is not much different than dealing with a special needs child. You do it because you want what is best for your family member. I was living a special parent/child relationship with my Mother and my Daughter. I now realize that I was an "Extreme Caregiver" during this time as I took on the role of caring for two family members - <i>"often without respite or foreseeable endpoint."</i></span></p><p><span style="font-family: trebuchet;">When the time came, my sister and I agreed to move Mom closer to my sister (9 hours away) when the Covid pandemic threatened our ability to see Mom in her assisted living community. The role of "Extreme Caregiver" involving my Mom was then passed to my sister. My sister's care was much more hands on as Mom lived with her at times. Both she and I got to experience precious time with Mom for almost exactly 3 years each. Neither of us regret it. The</span><span style="font-family: trebuchet;"> day after Valentine's Day this year, Mom had a fall and broke her hip. This was the beginning of the end, and she was gone a little more than 5 weeks later. The <i>"foreseeable endpoint"</i> had come and gone and we are all at peace knowing that we did the best for Mom in the twilight of her life. And what a beautiful life she had.</span></p><p><span style="font-family: trebuchet;">During the 5 weeks between Mom's fall and her death; our niece Kiersten passed away. Kiersten was Brett's Brother's daughter and was born with Hydrocephalus, and had special needs that were often much more complicated than Jenelle. Kiersten was 15 at the time of her death, and had been through so many medical challenges in her life. Her parents were "Extreme Caregivers" too. They often made decisions for Kiersten that Brett and I had never had to imagine making for Jenelle. On March 17, sweet Kiersten's body finally gave out. We were there that day with her parents and extended family members when Kiersten passed away. Another <i>"endpoint"</i> - their caregiving duty is done. Heartbreaking, and yet comforting to know her fight has come to an end.</span></p><p><span style="font-family: trebuchet;">Brett and I are still "Extreme Caregivers," with an intensly personal relationship with regards to our Jenelle. Caregiving done in the home. Often without respite. She is and will be our "plus one" for the remainder of her life.</span></p><p><span style="font-family: trebuchet;">Jenelle will be 21 this October, and with that comes a few changes. She will no longer be receiving services from California Children's Services (CCS), and we are told her medical group will change as well from Childrens Hospital Orange County to adult medicine. Well, some of her doctors at least, and for now I am pulling out all my resourses to nagivate these changes and decide what is best for Jenelle.</span></p><p><span style="font-family: trebuchet;">Unfortunately, Jenelle's seizures have changed and increased once again. While we no longer see the absence seizures (staring seizures) with the addition of Fintepla; we are noticing an increase of new seizures in the form of complex partial, atonics, tonics and drop seizures. Brett and I decided it was time to pull out the surgery options we'd been avoiding, and take another look. "What do we have to lose?" well, Jenelle of course. But what do we have to gain? Maybe nothing, maybe everything. Maybe it will be something we will wish we had done sooner? Maybe it will complicate things more than we imagined.</span></p><p><span style="font-family: trebuchet;">Once I informed Jenelle's neurological team at CHOC that we wanted to discuss surgical options, the Neuroscience department presented Jenelle's case to the team. The Team then met with us on Zoom to discuss the results of their discussion and presented the same 3 surgical options we were considering in the past - <a href="https://www.webmd.com/epilepsy/guide/corpus-callosotomy" target="_blank">Corpus Collostomy</a> (CC), <a href="https://www.webmd.com/epilepsy/epilepsy-deep-brain-stimulation" target="_blank">Deep Brain Stimulation</a> (DBS), and <a href="https://www.epilepsy.com/treatment/devices/responsive-neurostimulation" target="_blank">Responsive Neurostimulation (RNS)</a>. Dr. Olaya (our surgeon) prefers Corpus Collostomy as the studied results are best for patients with Lennox Gastaut Syndrome like Jenelle. Brett and I are against any surgery that "cuts" part of her brain, so we do not want to do CC. We all agreed that the next step was to start with another MRI, which Jenelle had done in May. </span></p><p><span style="font-family: trebuchet;">We met with Dr. Steenari on June 15 to discuss the outcome of the MRI and the options. </span><span style="font-family: trebuchet;">At that time, Jenelle was not doing well seizure wise. She was so drugged with the addition of daily Clonazepam that she was lethargic and drooling. She could barely walk. And, we were seeing too many pro-longed seizures. Dr. Steenari felt that surgery would not give us the immediate results we needed now, so we discussed, and decided to add </span><a href="https://xcopri.com/" style="font-family: trebuchet;" target="_blank">Xcopri (Cenebamate)</a><span style="font-family: trebuchet;"> and take away daily Clonazepam and keep it as needed. Studies have found Xcopri to be simililar to Fintelpa, with less side effects to the heart. </span></p><p><span style="font-family: trebuchet;">As for the MRI results, according to Dr. Steenari "Jenelle has a beautiful brain and a <i>normal</i> MRI." This has always been the outcome of her MRI, although it is the first time a doctor has said her brain was beautiful! </span><span style="font-family: trebuchet;">Dr. Steenari discussed all 3 surgical options, and agreed to respect our wishes with regards to the CC. The difference between the remaining two options is that one works better for "focal" seizures and one is better for "generalized" seizures. Neither have much research on how well patients with LGS respond, and both can be reveresed if we find it causes more harm than good.</span><span style="font-family: trebuchet;"> </span><span style="font-family: trebuchet;">The problem is that the origin of Jenelle's seizures are likely somewhere deep in her brain, and we aren't getting any accurate information from a regular MRI or EEG. </span></p><p><span style="font-family: trebuchet;">So, the next step is Intracrainial Monitoring, also called </span><a href="https://en.wikipedia.org/wiki/Stereoelectroencephalography" style="font-family: trebuchet;" target="_blank">Stereoelectroencephalography (Stero-EEG or SEEG.)</a><span style="font-family: trebuchet;"> We all agreed that this is something that may give us more information about Jenelle's seizures, and is something we've never explored. The SEEG is scheduled for early September, and from that, we will make a decision between DBS and RNS.</span></p><p><span style="font-family: trebuchet;">The days of this past Winter and Spring have felt long, dark and cold. The grief has almost been unbearable, but thankfully I am an Extreme Caregiver and I know I cannot do it alone. I'm feeling hopeful now with sunny and warm days ahead with the arrival of summer. I know that Brett and I have always made great decisions for Jenelle, and that won't stop now. As always, I will keep you posted.</span></p><p><span style="font-family: trebuchet;">Here are a couple of my favorite photos of Jenelle's last visit with Nana. I know that Nana will always enjoy watching over Jenelle for us from her view in heaven.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3YGITxbnXo9AyoF1j45OS4224nwbPMKZprnZrKFfK5RXMg64ERqEupGLns73oUZgf_1Rvr8ztJkpm5wZQZua870zwHuVCEi7Ad8ZMKPfpOGlZaVomzY51pOBNKmV7SAE5LlAYC4Wkrplz_C6tQ07f-VN_tinnoxsmncnnQMx-nycjYw9ZPEFP0A/s864/25799C1B-C581-4DB7-914F-71F2FF7E26AB.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="864" data-original-width="864" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3YGITxbnXo9AyoF1j45OS4224nwbPMKZprnZrKFfK5RXMg64ERqEupGLns73oUZgf_1Rvr8ztJkpm5wZQZua870zwHuVCEi7Ad8ZMKPfpOGlZaVomzY51pOBNKmV7SAE5LlAYC4Wkrplz_C6tQ07f-VN_tinnoxsmncnnQMx-nycjYw9ZPEFP0A/s320/25799C1B-C581-4DB7-914F-71F2FF7E26AB.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhopU6iaDE4PvscG_30x6J6NepEND-rA4cnUs7IuWnVbgnOZ9Uk_ts-d17KVHsLB2JoSFhHuq8FB_7k3OtdfTy7sA4NOgKSgOecyvTcmcg34RrtC5rGyxxrNl1iTAuYZmz3Jrexe9o7XPbRBzrOzZhAow2Fmt1rQD-QQbcpn7D01Fw8MV0tWxZLrQ/s864/0EB668B8-66B8-4C7A-A1EF-0655DE6E16E9.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="864" data-original-width="864" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhopU6iaDE4PvscG_30x6J6NepEND-rA4cnUs7IuWnVbgnOZ9Uk_ts-d17KVHsLB2JoSFhHuq8FB_7k3OtdfTy7sA4NOgKSgOecyvTcmcg34RrtC5rGyxxrNl1iTAuYZmz3Jrexe9o7XPbRBzrOzZhAow2Fmt1rQD-QQbcpn7D01Fw8MV0tWxZLrQ/s320/0EB668B8-66B8-4C7A-A1EF-0655DE6E16E9.jpg" width="320" /></a></div><br /><span style="font-family: trebuchet;"><br /></span><p></p><p><span style="font-family: trebuchet;"> </span></p><p><br /></p><p><br /></p><a name="_GoBack"></a><a name="_GoBack"></a>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com1tag:blogger.com,1999:blog-6645130.post-1901913093546412032023-05-11T09:30:00.005-07:002023-05-11T09:30:49.851-07:002022 went by in a FLASH! New Year update!<p><i><span style="font-size: x-small;">NOTE: I started drafting this in January and here it is May. A lot has happened in our family in the last 4 months including the death of our niece (Jenelle's cousin) Kiersten Curran, and my Mom (Jenelle's Nana.) It has been a lot to endure.</span></i></p><p><i><span style="font-size: x-small;">I will update on that soon, but in the meantime I wanted to finish and post what I had to say in January - Thank you for your patience. ~Kelly</span></i></p><p><i><span style="font-size: x-small;">~~~~~~~~~</span></i></p><p>Wow, so much has happened this past year, which passed by insanely fast in my opinion. Jenelle continues to do well on Fintepla. If you recall, we had been considering three different surgical options before starting Fintepla. Corpus Callostomy, Deep Brain Stimulator (DBS) and the RNS. Jenelle was doing so well seizure wise on Depakote, Fintepla and Felbamate that we felt we had an opportunity to try to decrease her medications instead of surgery, keeping the idea of surgery in our back pocket just in case.</p><p>At our appointment in late July, we decided to wean her off Depakote. We started very slowly, taking a total of 22 weeks to wean her off with the last dose given the day after Thanksgiving. As we got closer to the end of the wean in late October, we unfortunately started seeing an increase in drops. Knowing that a wean can make things worse before better, we stayed the course. </p><p>In October, Jenelle had an overnight EEG at CHOC. We wanted to confirm that the increase in seizures were the same that we have been unable to control as opposed to something new because of the decrease in Depakote. The good news from that EEG was that we were seeing the same type of seizrues, and had room to increase her Felbamate. So, before we finished the Depakote wean, we increased Felbamate and unfortunately, but didn't see much help. </p><p>So right now, we are trying to figure out the next step. We are seeing less side effects with the Fintepla / Felbamate combination, but still too many seizures. As Jenelle approaches 21 in October, we will also be moving away from CHOC and toward adult doctors and hospitals. Lots of changes to consider and I will keep you posted once we make some decisions.</p><p><br /></p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-34571574686766602702022-01-18T18:03:00.002-08:002022-01-18T18:03:43.041-08:00And Jinx!<p>Well, that was quite a Honeymoon! Unfortunately, since my last update in November about Jenelle's AMAZING seizure control on the new drug Fintepla; seizures started creeping back on a daily basis back to her normal baseline of 3 to 8 a day. But for 14 amazing days, she was seizure free!</p><p>We met with Dr. Steenari the week after Christmas and discussed our options. Prior to Fintepla, we were discussing brain surgery (Corpus Callostomy). That is still an option as well as another surgery option - <a href="https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/deep-brain-stimulation-dbs" target="_blank">Deep Brain Stimulation (or DBS)</a>. Like the <a href="https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns" target="_blank">Vagus Nerve Stimulator (VNS)</a> which Jenelle already has, DBS is a probe inserted into the brain to discharge an electrical pulse to stop seizures from starting at the deepest part of the brain when they begin. We also discussed the possibility of trying a modified Atkins diet and Dr. Steenari has ordered a metabolic panel to start.</p><p>Getting back to the DBS - as mentioned before, Jenelle suffers from 5 or more different "types" of seizures. With her current medication cocktail, and the VNS, we have eliminated all but one type of seizure for Jenelle, which is the drop seizure. Prior to inserting the VNS, Jenelle struggled with 3 types of seizures - absence seizures (staring seizures), complex partial seizures and drop seizures (with the occasional and rare Grand Mal (tonic/clonic) thrown in when she was really sick.) So, getting her VNS drastically improved her seizure and her quality of life in controlling the absence seizures and complex partial. With DBS being very similar to VNS, we are inclined to consider getting the DBS before Corpus Callostomy. Brett and I need to do a lot more researcg about Corpus Callostomy and DBS before making any decision. At the conclusion of our follow up, we decided to "stay the course" for now and now make any changes and consider surger in the Spring/Summer when the Flu and Covid seasons are better. As always I will keep you posted... </p><p>We had a wonderful winter break until we all came down with Covid at the beginning of the new year. Well, Brett and Jack had positive tests for Covid, and Jenelle and I were negative but with our family doctor said that with Omicron being so contagious, and all of us in under one roof, just consider us all infected. Brett seemed to have a horrible cough (lingering), and I had the sinus/ear thing while Jenelle had a runny nose and Jack was completely symptom free except for some fatigue (those darn college athletes!) We are all out of isolation/quarantine now and excited to start this New Year again.</p><p>That is all for now. Thank you for your thoughts and prayers... our next follow up is in March.</p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-46109388418261800262021-11-16T17:09:00.000-08:002021-11-16T17:09:03.592-08:00Something New!<p></p><p><a name="_GoBack"></a><span style="color: black; font-size: 13.5pt;">Just wanted
to send out a quick update since Jenelle's last overnight video EEG on October
27. I've been holding off to post this, because I didn't want to jinx it,
but Jenelle did not have <b>ANY</b> seizures captured on her last EEG.
<b>None</b>. First time maybe ever! As any parent knows, this streak will
only last until her next seizure. And slowly, in the last week, she is having
drop seizures again... so it's safe to update you now!<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">Still... we are definitely in new territory. Dr. Steenari said that the EEG did not capture any
seizures (which I figured because I didn't notice any either). Her brain
waves during the day are very clean. Unfortunately, her brain waves
during sleep are pretty chaotic... which doesn't necessarily mean seizures. It
just means her brain is very abnormal at night. Dr. Steenari believes the
Fintelpa is helping, but Jenelle is still at a great risk for drop
seizures. She is now recommending we proceed with Corpus Callostomy.<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">So, here is the thing.
We've been dealing with Jenelle's seizures (and how to stop them) since age 10
months. This last "no seizure" trend lasted a little over 8
days. She now has maybe one or two "drops" first thing in the
morning. And those drops can cause serious injury (broken teeth, broken
bones, head concussion, etc.) I always try to explain to everyone...
Jenelle will never not have seizures. It simply won't happen. What
Brett and I have been working towards with all of her medical doctors is her
"quality of life." <o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">Right now, Jenelle is happy,
healthy, and content. We don't see any horrible side effects from her
medications (like mood swings, depression, crying fits, self-harm, etc.)
Living her life using medications that have few side effects is a great quality
for life for Jenelle. Sure, the EEG is showing chaotic brain waves at
night. But at night, Jenelle sleeps, is in the safety of her bed and
always under our supervision. What we need to determine is how to best
keep her safe during the day. Will that mean Corpus Callostomy?
Probably.<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">So I've taken a while to post
all of this because like I said, leading up to Jenelle's EEG, and the 8 or so
days that followed, we did not see any seizures. It was kind of
weird. Kind of exciting too. To think that this new medication
(Fintepla) may actually be the drug we've been praying for. And then
slowly, in the last week or so, Jenelle has been having morning head
drops. Sometimes just one. No more than three. Considering
she was up to 15 to 30 drops a day, this is great improvement. We're
going to give it more time. She has only been at the therapeutic dose for
two weeks. It can take 6 weeks to really see consistent results.
And she has had a runny nose the past couple of days, so there can be other
reasons these drops seizures are happening. It just takes time.<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">So for now... we're pretty
excited. Feeling happy, yet cautious. Let's hope it stays that
way. I'll be sure to keep you posted.</span></p><p></p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-74727472785093584552021-10-21T22:25:00.001-07:002021-10-22T10:51:21.458-07:00Choices and Changes and Birthdays!<p> A lot has been going on with our girl, so I thought it was time for an update... and just in time for her 19th Birthday tomorow!</p><p>In my last update, Jenelle had a UTI. That resolved quickly, thankfully, and the rest of the summer went by without issues. Big Brother Jack moved back to campus and football camp at the University of LaVerne and Jenelle started back to school in person at Tustin High School in the Adult Transition Program. I am now working back in my office in Newport Beach and Brett is thrilled to have his "home office" to himself again. </p><p>I didn't mention it in my last two updates, because it was not my news to share, but our beloved neurologist at CHOC, Dr. Lily Tran, made a huge life changing decision to move her family back to the East Coast where they had family and friends. Those of you in Delaware who have the ability to go to Nemours Children's Hospital, and who are looking for an Epileptologist ... run see Dr. Tran. She is amazing and is an absolute Rock Star! She is making positive changes in the world of Neurology and we miss her dearly. When Dr. Tran left, we transferred Jenelle's care to Dr. Maija Steenari at CHOC (same group, same hospital). Dr. Steenari was a member of Jenelle's neurology team at CHOC and has seen her in hospital many times so we expect the transition to be seemless.</p><p>Prior to Dr. Tran leaving, we learned that Jenelle needed a replacement VNS as the battery was dying. Something we didn't share was that for many months, Brett and I have been trying to make a decision about Corpus Callostomy surgery to help stop Jenelle's "drop" seizures. Dr. Tran suggested it and we met a couple of times (on Zoom) with Dr. Tran and Jenelle's neurosurgeon Dr. Goffry Olaya. The procedure that was being recommended was different than your typical "Brain Surgery" - Dr. Olaya has been performing a <a href="https://www.webmd.com/epilepsy/guide/corpus-callosotomy" target="_blank">Corpus Callostomy (CC for short)</a> on patients now using a laser and burr holes, rather than opening up the skull. Think of it as a "laporoscopy" procedure - like taking out the appendix with a laser instead of opening you up. Less side effects, less time in the hospital for recovery. The only down side was Covid... and only one parent could stay in the hospital with the patient at that time. AND, at the time we started discussing it, Dr. Olaya had only performed one other surgery like this at CHOC. Brett and I have always felt that Brain Surgery for seizures was our "last option." When all other drugs have failed. And Jenelle has failed many, many different drugs - including Epidiolex (medical marijuana.)</p><p>It is a huge decision. Brett and I change our minds daily - wanting to schedule it and then wanting to wait. There are and were lots of things to consider in deciding on elective surgery ... in a pandemic ... and we still have not agreed to it. Then we had our first meeting with Dr. Steenari. We discussed all of Jenelle's medications and explained our apprehension to surgery. Dr. Steenari agreed that it was a lot to consider... and the good news (maybe) is there are two more drugs we've yet to try. So right now, the decision for CC Brain Surgery has been "tabled" and we have started Jenelle on <a href="http://www.fintepla.com" target="_blank">Fintelpa</a>.</p><p>So, remember a couple of years prior to the Pandemic? We were trying to get Jenelle OFF Risperdol and <a href="https://jenellesjourney.blogspot.com/2018/04/oops-i-did-it-again.html">into a drug trial</a> for a drug that was similar to the diet drug Fen Fen? This Drug had promising research results in Europe where 95% of teenage females with intractable epilepsy (Lennox Gastaut Syndrome) went seizure free on the drug. Unfortunately, we had difficulty getting her off Risperdol and were unable to be in the trial. Remember that? Well now, that drug is out of trial phase and has been approved by the FDA - Fintepla. The plan now is to give Fintepla a few months to work, and discuss CC Brain Surgery next summer. </p><p>Jenelle had her VNS Outpatient Surgery on September 9 and did great. We started Fintepla last Friday and will have an overnight EEG next week to see how things are going. If Fintepla helps, we will try to decrease either Felbamate or Depakote. </p><p>Jenelle has really be a joy lately. She is so relaxed, and seems to really love having us all to herself. Last month, we took a small vacation with Jenelle, Grandma and Grandpa to Seattle, Washington to go to Big Brother's football game against Pacific Luthern University. Jenelle did really well. She was perfect on the plane - wearing her mask the entire time - and was quite a trooper at the football game. She even climbed 25 stairs to the top of the stadium so we could sit undercover from the rain. It was a great trip and gives me hope for other trips like this in the future.</p><p>So tomorrow, Jenelle will be 19. 14 years past her "life expectancy." Every day with her is a blessing and we are so grateful. However, now that Jenelle is in her late teens, the chances of <a href="https://www.epilepsy.com/learn/early-death-and-sudep/sudep" target="_blank">SUDEP</a> (Sudden Unexplained Death in Epilepsy) increase. October is SUDEP awareness month. Every night I make sure to give her a kiss and say a small prayer because tomorrow is not guaranteed. All we can do is keep her healthy, keep her happy and hope for many more days with this amazing young lady. </p><p>Here are some photos our summer trip to Tahoe to visit Nana, and from Seattle of our Birthday Girl.</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8DG8-jtxHDtCJA5dQFQ30N9VgQ9BT4n9XMtq0eB_gwpkv8iNRRryFSR0PAoFOdRB56oO1amk5wgEy4cnGxcUBHMU_dc031ddL7KqYwLTYubwrjqA3RGm39EQ45FiDlFACCHGS1g/s1440/23BF409F-55F3-43A9-BAB8-E409FC7C4219.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1439" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8DG8-jtxHDtCJA5dQFQ30N9VgQ9BT4n9XMtq0eB_gwpkv8iNRRryFSR0PAoFOdRB56oO1amk5wgEy4cnGxcUBHMU_dc031ddL7KqYwLTYubwrjqA3RGm39EQ45FiDlFACCHGS1g/w320-h320/23BF409F-55F3-43A9-BAB8-E409FC7C4219.jpg" title="Only girl cousin!" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Only girl cousin on Jones side.</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN7vNtm14Xjl-oX9Qhz6MBUXSfIZcG80TYqBsuoyHS2U_APwrXJWXQCT_JhzZorlcAsRQDyypWS-DAmoWB5AZpTbh1JnBJB7hMFT5x2e0e_w4vHpLvkv_zTugnowiKEf0xgEQKYw/s2048/IMG_6205.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1539" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN7vNtm14Xjl-oX9Qhz6MBUXSfIZcG80TYqBsuoyHS2U_APwrXJWXQCT_JhzZorlcAsRQDyypWS-DAmoWB5AZpTbh1JnBJB7hMFT5x2e0e_w4vHpLvkv_zTugnowiKEf0xgEQKYw/s320/IMG_6205.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Sitting pretty on the plane to Seattle.</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoJIacvCpUFNsBvE9CKFlgzHwIgf8x-yPmHpPjngZkj2YF493ebJefNCjdh1giu5ER4uNYCIx_WFu2XMk6qt12dARSWm_404LmYwHPsCAmzAp0_89nYc_Zmk4HD6Ulavv6arqR5A/s2048/IMG_6234.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoJIacvCpUFNsBvE9CKFlgzHwIgf8x-yPmHpPjngZkj2YF493ebJefNCjdh1giu5ER4uNYCIx_WFu2XMk6qt12dARSWm_404LmYwHPsCAmzAp0_89nYc_Zmk4HD6Ulavv6arqR5A/s320/IMG_6234.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Enjoying Pike Place Market.</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho2rhtqIeZblMDo0rdANrW0I27tNwWYjFLnzXvN9CAOu6_Y3HgwAH64qgQ16y7CXl8Fsra09Oc_GTLJlZ5b_SRRz3Xh5WHWJMesxIhKyzXhgPZRcOFnUn_PFd2iQQrSfFm0LhyCQ/s1440/7F56A04F-FE57-4B56-A143-315D5EC6F72A.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1440" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho2rhtqIeZblMDo0rdANrW0I27tNwWYjFLnzXvN9CAOu6_Y3HgwAH64qgQ16y7CXl8Fsra09Oc_GTLJlZ5b_SRRz3Xh5WHWJMesxIhKyzXhgPZRcOFnUn_PFd2iQQrSfFm0LhyCQ/s320/7F56A04F-FE57-4B56-A143-315D5EC6F72A.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Sharing secrets with Nana.</td></tr></tbody></table><br /><p><br /></p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-33982349677353868952021-06-29T19:17:00.001-07:002021-06-29T19:17:25.870-07:00When your "Normal" streak ends<p> All Special Needs parents understand that when things are stable, things are great... until they aren't. Jenelle has had an unbelievable run at "Stability" or for lack of better word, "Normal Days" during the COVID pandemic. That run ended last Friday morning when we had to take Jenelle to the ER.</p><p>The day started just like all our normal days start. Jenelle woke up, was fed and medicated, and sat through her first Zoom class of the day. Towards the end of class, she kept grabbing my arm, and trying to stand up. I figured she was DONE with class - they did go over the usual time limit that morning. When we logged off, I took her into the living room to play, but she wanted none of that. She kept grabbing my arm. I knew she was trying to tell me something, but I couldn't figure it out. I thought maybe she wanted a diaper change, but she was dry. Then, Jenelle started to behave in a way that I've never seen ... She was clammy, sweating (Jenelle does NOT sweat), dizzy and clearly agitated. She was not having a seizure, but she was definitely not her normal baseline.</p><p>I called her Neurologist office to ask for advice. After discussing the symptoms, I agreed to take her to the ER. Bottom line, her neurological behaviors were altered. They called ahead so the ER was expecting us.</p><p>There were lots of possibilities - She could have a concussion from a fall we didn't know about. She could be having blood sugar issues. She could have something else that was causing her pain. When a non-verbal child can't tell you what is wrong; this is where we go to get answers. X-ray of tummy, bloodwork, uninalysis, and Head CT were all ordered. Within a couple of hours, we learned that Jenelle had a UTI - which explains all of the crazy, altered symptoms. Were went home a few hours later with an RX for antibiotics and a happier Jenelle.</p><p>It was just a few hours, but the day was done. Jenelle got extra cuddles and Mom ordered take out. At the end of the day and into the next; Brett and I were exhausted. I began to realize that the fear never goes away. And that fear grows even stronger when its been dormant for a while. One "bad" day takes many to recover.</p><p>Changing the subject - I thought I'd update you on the latest since last January. Jenelle got vaccinated in March/April and will return to in-person class in August. She got to participate in the Graduation ceremony for her Class of 2021 (the 99th graduating class at Tustin High School!) In August she will begin "year 13" in the Adult Program with the same teacher and classmates. She is going to need outpatient surgery soon to switch out the battery for her Vagus Nerve Stimulator (VNS) and has been running on 11% battery (Mom is freaking, but the Neurologist says we have 6 months!)</p><p>Our family is embracing the end of the pandemic and lock down and looking foward to school starting in August - IN PERSON - for both Jenelle and her brother Jack. And until then, we will keep enjoying the lazy days of summer.</p><p>Here are some photos of Jenelle's graduation. She looks very proud of her accomplishment.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjKI4_kElXIPFoBCFLo5EjLxJ4YZEGO-xOqUWIWa6IW3PWrzymKPiwj77QXCvdtJF3uE8u835Em5ibLMkWztWENbXImx0I9ERGu64AgLu8jnybY_icX_4N7Eg05R9mwaljlNj72w/s1440/AF41BCB5-77AD-446A-A639-5A8A7ED04721.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjKI4_kElXIPFoBCFLo5EjLxJ4YZEGO-xOqUWIWa6IW3PWrzymKPiwj77QXCvdtJF3uE8u835Em5ibLMkWztWENbXImx0I9ERGu64AgLu8jnybY_icX_4N7Eg05R9mwaljlNj72w/s320/AF41BCB5-77AD-446A-A639-5A8A7ED04721.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6WNGNEZWVyDHi7eog353_LgQ6Tto3vj8OdJFT4Q_ZylkNoSyznU6jStCK5Soxq8_sATWCk9raugn89x62dVwRcNozNaqUvArDrLP3LdO4EdKU1uD9iDms3pNFhvrxG0gyVc39Dw/s1440/0DB7FDA3-CBF5-4AE4-AC1B-9140F6B238EA.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6WNGNEZWVyDHi7eog353_LgQ6Tto3vj8OdJFT4Q_ZylkNoSyznU6jStCK5Soxq8_sATWCk9raugn89x62dVwRcNozNaqUvArDrLP3LdO4EdKU1uD9iDms3pNFhvrxG0gyVc39Dw/s320/0DB7FDA3-CBF5-4AE4-AC1B-9140F6B238EA.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDf-4yAMiCImMoE9zLAo_P2mjeoNe_zum7QrI9zagsagxYFmqdKqGXVroWuOBihgzxUgv-NV79MVltaRS9NAXw-CEUTA45-_OcXyJjtlHH6eimrSV5LgpB5k2-jQP7n1_oLj55Gw/s1440/7AC3E84F-C2DC-46A6-90C2-4CC94B1E6EBB.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDf-4yAMiCImMoE9zLAo_P2mjeoNe_zum7QrI9zagsagxYFmqdKqGXVroWuOBihgzxUgv-NV79MVltaRS9NAXw-CEUTA45-_OcXyJjtlHH6eimrSV5LgpB5k2-jQP7n1_oLj55Gw/s320/7AC3E84F-C2DC-46A6-90C2-4CC94B1E6EBB.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfT7vp_KgbiRnuL7suijHnDlhrHqP5HY72-xuNdwRa1Mteabc-fdUtm42BpT7sV6koM9u-FX-d2Q26NWUW890OxrsN3sSqC-oT-UA0Hi6xlPYbAOSE9oSHsf4HrBBe8BwxPTrsXA/s1440/8ADF867B-27BF-4EB3-80F9-57C43D8D8984.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfT7vp_KgbiRnuL7suijHnDlhrHqP5HY72-xuNdwRa1Mteabc-fdUtm42BpT7sV6koM9u-FX-d2Q26NWUW890OxrsN3sSqC-oT-UA0Hi6xlPYbAOSE9oSHsf4HrBBe8BwxPTrsXA/s320/8ADF867B-27BF-4EB3-80F9-57C43D8D8984.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixMMn6tOhULhkSmgkpkauiTkiX3SlkWfv6Hy5TCJtIeV9ElLjx79VmtpVc6VKHvv3LMwLERJqRc9bMVwIbipqAgtRE0ux1_wp7pOOGs0ruzOlxBR8DDYDTXFg0PUg8cnwGsj0g9Q/s1440/587223C5-1444-4594-83A0-E4E231E66B69.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixMMn6tOhULhkSmgkpkauiTkiX3SlkWfv6Hy5TCJtIeV9ElLjx79VmtpVc6VKHvv3LMwLERJqRc9bMVwIbipqAgtRE0ux1_wp7pOOGs0ruzOlxBR8DDYDTXFg0PUg8cnwGsj0g9Q/s320/587223C5-1444-4594-83A0-E4E231E66B69.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhenJn82c73LeY8ec_MOHnHKklgMX6tmXuTbj3okhmvX9Ja6v7kLu5nYM_NHZevzexqf4aYtBbsKN-aa-ANntM8QpqGNuOGJdq-fPolSH53il-NIybIE8cTv3tm2MzEnGA8ije9rQ/s2048/IMG_5405.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Nana watching online." border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhenJn82c73LeY8ec_MOHnHKklgMX6tmXuTbj3okhmvX9Ja6v7kLu5nYM_NHZevzexqf4aYtBbsKN-aa-ANntM8QpqGNuOGJdq-fPolSH53il-NIybIE8cTv3tm2MzEnGA8ije9rQ/w240-h320/IMG_5405.JPG" width="240" /></a></div><br /><p><br /></p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-9976404986854486982021-01-12T19:50:00.003-08:002021-01-13T16:16:16.171-08:00Hindsight is 2020~So, back to our update about Miss Jenelle. My last update left off when we discovered that Jenelle's two front teeth were infected and needed extraction. Poor baby girl. I was devastated that this had been going on for a few months and we didn't get it treated soon enough. On an emergency basis, Jenelle finally got into CHOC for the dental procedure on January 28. <div> <br />For a child like Jenelle, all dental procedures like filling cavities and full cleanings have to be done under anesthesia. Our Dentist has privileges at CHOC, and they were able to get her in quickly. While under anesthesia, they got a good set of x rays showing that Jenelle had fractured a third tooth next to her two front teeth. During the procedure, the dentist came out to ask my permission to pull all three. It really was the only option, and I felt miserable. I sent a group text to the family to update everyone and ended it with "Jenelle has shitty parents''... Jack replied quickly "No Comment" which lightened the mood considerably.</div><div> <br />Jenelle looked like a Rugrat with her bloody, gummy smile, but she got through the procedure with a smile and looked as if she felt better immediately. In the coming weeks, we noticed that once the infected teeth were gone, Jenelle's smile came back. She was drooling less and obviously in less pain. The bigger problem however was trying to get her to eat by mouth. Also around that time, Covid 19 reared its ugly head.</div><div><br />When the world stopped on March 13, 2020, I decided to stop trying to feed Jenelle by mouth. There was no need to risk aspiration ending in pneumonia or worse with a global pandemic. Basically, we were going to try to avoid anything that could land us in the ER.</div><div><br />All special needs kids function best when on a strict schedule. In talking to a lot of other parents in support groups - the global shut down from the pandemic came with mixed reactions from special needs kids. We were very fortunate that Jenelle loved it. She loved having everyone home, including big brother and as a result, we saw less seizures.</div><div><br />Like everyone, we had to find a new way of doing things - like school. From March to the end of the school year, Jenelle attended class twice a week via Google Class Room for a 30 minute check in with her teachers. I became her teacher and while also trying to work part time as a paralegal, I had to figure out how to do the teaching job of Jenelle's Special Education team. IT was not easy. We watched a lot of Kid You Tube - SAG/AFTRA Storytime, Science Guy, videos of dominos setting up and tumbling down, and a hamster who liked to run through obstacle courses. When June rolled around, I think we all (and with that I am including Jenelle's Special Education Team) realized this was not enough.</div><div><br />Because of the severity of Jenelle's special needs, she qualifies for what they call Extended School Year (ESY). The week after the last day of the 2019/2020 school year, Jenelle began a more rigorous schedule with Google Meets twice a day for 30 minutes for the next 5 weeks. Her teachers and therapists introduced me to many apps to use on her school issued Ipad, including SoundingBoard which had a "yes/no'' switch. I also found cause and effect Apps that Jenelle immediately recognized and enjoyed playing with. Over these 5 weeks, I began to learn how Jenelle communicates. I learned her likes and dislikes and really began to appreciate the education she has been getting. Without witnessing it, I had such a misconception of what "should'' be happening and why. </div><div> <br />Although Jenelle is non-verbal; she can communicate. She has a definite head nod for a yes, and looks to her right for no. She loves music, and any video with classical music especially. When I show her the communication board we created for yes or no, she will specifically look at the "button" she wants to select. She enjoys seeing her teacher, aides and classmates. She hates PE. By the end of the ESY, the Team (her teacher, her aides and me) really have an excellent routine that is working with the goals of her IEP. <br />The new school year arrived, Jenelle's Senior year, and we are still in this pandemic. Staying the course, we kept her at home with online school. Things are going well.</div><div><br />Another huge milestone in 2020; Jenelle turned 18 in October. What this also means is that we had to hire an attorney to file for Limited Conservatorship for Jenelle so that we can continue to guide her medical decisions and such. Our hearing was two days before her birthday, and she got to keep her right to vote, and voted in the 2020 Presidential election.</div><div><br />I really meant for this update to publish sooner, but this year has been exhausting. We are very blessed in that Brett and I have jobs that are thriving, we've spent extra time with our kids at home, and we've really gotten to know Jenelle even more than we did. </div><div> <br />Today is January 12, 2021. Jenelle is still taking online classes and I don't imagine she will return to in person class until after Spring Break, maybe even ESY. We received an email allowing us to register for an appointment for the vaccine, but every day that I check it, all the appointments are taken. But it will happen, and life will get back to a "new normal".</div><div><br />And now, because I am just so incredibly proud of this "normal" milestone for Jenelle - I give you her senior photo... Tustin High School Class of 2021!<p style="height: 0px; text-align: left;"></p><div style="text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp7B527DaOSFs4zJHoXONmroKdSz2gu_kt3PiMPIgnfHiSn42j_Vpnq_JUbMhdW_v2MLQDAf_Ji4ifxSoUBFLbSh_9ghWyMjs0j2pC3GcPuE0tSSJ4R4T7ZprNCy9s0pv_wFo0pg/s2048/HPSCAN_20201204062215882_2020-12-04_062309465.jpeg" style="font-family: inherit; margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1463" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp7B527DaOSFs4zJHoXONmroKdSz2gu_kt3PiMPIgnfHiSn42j_Vpnq_JUbMhdW_v2MLQDAf_Ji4ifxSoUBFLbSh_9ghWyMjs0j2pC3GcPuE0tSSJ4R4T7ZprNCy9s0pv_wFo0pg/s320/HPSCAN_20201204062215882_2020-12-04_062309465.jpeg" /></a></div><span style="font-family: inherit;"><div style="text-align: left;"><br /></div></span><p></p><p style="text-align: left;"><br /></p></div>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com0tag:blogger.com,1999:blog-6645130.post-88540160615001016132020-09-03T18:15:00.001-07:002020-09-03T18:15:23.302-07:002020 - Oh my how you suck!<p></p><p><a name="_GoBack"></a><span style="color: black; font-size: 13.5pt;">Where were
we last - April 2019? Wow. I don't really have an excuse for not
updating. Life happens... and then we have 2020!<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">Before bringing you up to date with Miss Jenelle, I have to
acknowledge the current state of affairs in the world. The world is now
learning to acknowledge that individuals with pre-existing health issues need
to be protected. We wear protective masks... we wash and wash and wash our
hands... we stay home. It's not easy and for special needs parents it’s
like experiencing the fear all over again each and every day. To say I've
experienced days of PTSD is an understatement. To stay home was a fairly
easy adjustment for us. We really don't go out much, and our first
thought before making any plans is "Who is going to watch
Jenelle?" And those plans can be as extravagant as the getaway Brett
and I had to Oxnard, CA for my 50th Birthday celebration in January, or as
simple as who can watch Jenelle for 10 minutes while I jump in the shower?<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">The world now has a "New Normal." Yeah. Love
that catch phrase! We've experienced so many "new normals" that
I don't really think of everyday life as normal anymore. It just is what
it is. <o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">So... Let me finish 2019 for you. We were in April
2019. We were giving Epidiolex a try... <o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">We had lots of hope, and gave it a good try, but alas like so many
drugs it was not the miracle we hoped for. In May or June, we were
admitted to CHOC for an overnight EEG to confirm our suspicions that Epidiolex
wasn't working. While in hospital, and once we agreed with Dr. Tran that
it wasn't working, we were able to safely wean Jenelle from Epidiolex and place
her on a therapeutic dose of Depakote. What? If you recall, we had
tried Depakote two years prior with disastrous results. Jenelle has a
gene that does not allow her body to properly digest Depakote and she was
hospitalized for vomiting and low ammonia levels. So why in the hell
would we try that again? Well my friends, we have a lot of faith in our
Neurologist Dr. Lily Tran.<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">Dr. Tran kept bringing up the idea of going back on
Depakote. For kid like Jenelle with the genetic condition, Depakote works
well if taken in conjunction with Levocarnitine. At the time, there was
another drug study hopefully in the works, but nothing left to try once we
ruled out Epidiolex. So, while in hospital, we agreed to go back on
Depakote while in hospital so Jenelle could get a "loading therapeutic
dose" of Levocarnitine before beginning. And wouldn't you know, she
has had great seizure control ever since! Depakote combined with
Felbamate is the cocktail that is working for us for now. Her VNS is
still helping as well. Jenelle still has daily seizures - anywhere from 3
to 15 head drops. But it's acceptable. <o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">So, we have seizures controlled, but as with any special needs
child other issues can sometimes rear their ugly head. Enter
"Gastroenterology" issues... specifically, severe constipation
issues.<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">About a month after starting Depakote, Jenelle started having a
lot of vomiting. I was convinced it was the ammonia issues, but alas I am
not a doctor! We took her to the ER where they found that her ammonia
level was fine, but she was back up. So backed up that her bowels stopped
working. They call that an ileus. Turns out when that happens, food
comes back up instead of out the bowel. She was miserable. Enter
Daddy, who was not simply going to take her home with stronger laxatives.
We demanded a meeting with all of GI and they provided us with an option for
"daily water enemas". The system is called Coloplast, and it is
used mostly for children or adults who are paralyzed from the waist down.
It works really well... no over the counter enemas and Jenelle's BM are very,
very regular! Happy girl! I'm skipping over a lot of detail, but
really, you will thank me!<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">So things were good for a few more months, until they weren't
again. Right around Jenelle's birthday, she did a face plan (seizure
induced) on one of her toys. She cried a lot, we soothed her, there was
blood but everything seemed fine. OMG, I didn't even post about Jenelle's
17th Birthday! Wow, this blog has been neglected.<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">Around Thanksgiving, Jenelle started to go on food strike.
She would barely eat, and we were getting worried. Lots of drooling
too. We were going round and round with each specialist (neuro, GI, etc.)
and really not finding any answers. Then, just after the New Year,
Jenelle had a dentist appointment. As it turns out, her two front teeth
were badly infected. How does that happen? Well remember, she
chipped a tooth in 2018 right around Christmas. Then, that face plant in
October probably damaged them further. We don't know. But the
dentist told me they would schedule her for extraction. Excuse me?
Extraction? Yes. Pediatric Dentists rarely do root canals for
special needs children. In fact, it wasn't even covered by
Medi-Cal. Pulling out her two front teeth was the only option.<o:p></o:p></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;">Got that news around January 4, 2020. I had a pit in my
stomach for days. I had failed her. My 17 year old Baby Girl was
going to have her front teeth removed! Not really any options for
replacement either - she will probably fall again from a seizure and break them
too or worse. I was just sick. I just knew this New Year was going
to be challenging one. Oh wow, I had no idea how right I was!<o:p></o:p></span></p>
<p class="MsoNormal"><o:p> I will update soon (PROMISE) for 2020! After all, Miss Jenelle is almost 18 AND a senior in High School! What? How did that happen!</o:p></p><br /><p></p>Kellyhttp://www.blogger.com/profile/17256371707801041596noreply@blogger.com2