tag:blogger.com,1999:blog-88541033115951490772024-03-13T12:17:01.218-05:00The Journey We Are On.....Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey. JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.comBlogger345125tag:blogger.com,1999:blog-8854103311595149077.post-21777962819207227482018-08-17T15:52:00.002-05:002018-08-17T15:52:54.154-05:00Back to School Time!<div style="text-align: left;">
It's that time again to head back to school! Ethan loves school, which is great. We know that we are extremely blessed to have a great team of professionals who work with him daily. When we first received the PBD-ZSD diagnosis I couldn't even imagine that Ethan would live long enough to go to preschool, let alone make it to elementary school. Even as I write this I can't help but think of all of my friends who aren't able to share first day of school pictures. "<a href="http://community.today.com/post/dear-kindergarten-teacher?cid=sm_npd_td_fb_ma" target="_blank">Dear Kindergarten Teacher: My son will be absent on the first day of school</a>" is a beautiful tribute to bereaved parents everywhere. </div>
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As school starts this year we are also thinking about and praying for our former foster daughters who are now back home with their biological parents. Driving by the bus stop, instead of walking down there with three children in tow, like I did the previous two school years, on the first day was a bit emotional. Since we don't live in the same town, that means the girls are at new schools this year. We are especially praying for their teachers, and that they will have soft hearts towards these two precious little girls who have been through so much. "<a href="http://www.ransomforisrael.com/the-trauma-informed-teacher-silent-front-line/" target="_blank">The Trauma Informed Teacher - Silent Front Line</a>" provides a bit of insight into what so many teachers are facing as they begin the school year. </div>
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Ethan's first day of 2nd grade! </div>
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Second grade, and school in general, is different for Ethan than many students. School for him isn't academic in the traditional sense, but he is learning nevertheless. Goals for this year include maintaining skills he has already learned and building upon them to increase communication, mobility, play, and social skills.<br />
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Ethan attends a regular neighborhood school, although it isn't actually our neighborhood school, that also serves as a special education hub, not only for our school district but also for multiple surrounding districts. The regular education students at Ethan's school have a lot of exposure to students with disabilities, but this isn't true for all children. If you are the parent, have you talked to your child about disabilities? If not, please do. You might want to check out this article for some hints: "<a href="https://themighty.com/2018/08/please-talk-to-your-kids-about-disabilities/?utm_source=facebook&utm_medium=Paid&utm_campaign=Week33_Audience2" target="_blank">As the School Year Begins Please Talk to Your Kids about Disabilities</a>."<br />
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-21460924865012730822018-08-04T22:37:00.001-05:002018-08-04T22:38:29.749-05:00A Family of 3 Once Again....Jason Johnson is a writer of a blog and several books about fostering and adoption. One of his recent posts "<a href="http://jasonjohnsonblog.com/blog/saying-yes-to-the-unknown" target="_blank">Foster Care, Adoption, and Saying Yes to the Unknown</a>" is a powerful and insightful look into the life of a foster parent. I'll be the first one to admit that when we said "YES" to two little girls who needed a family that we never thought that I'd be writing about the girls return to their biological parents. However, a little over a week ago our two foster daughters moved back in with their mom and dad.<br />
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"<a href="https://www.huffingtonpost.com/2013/01/15/foster-parenting-and-connection-adoption-portrait_n_2457370.html?ncid=engmodushpmg00000003" target="_blank">Saying Goodbye To The Foster Care Child I Fell In Love With</a>," isn't exactly like our story, but there are a lot of similarities, and gives you a bit of a look into what we have experienced and are now experiencing. We are heartbroken and grieving. We miss them so very much, be we also know that they are loved and that they are happy. This summer as we prepared for this we spoke openly and often about the fact that you can be both happy and sad at the same time. They could be happy to be moving back with their mom and dad and also be sad about no longer living with us. We can be sad that they are gone and that things didn't end up turning out like we had once hoped and prayed, but also be happy that a family has been reunified. Family reunification is a success story, even if it isn't the one that we had expected.<br />
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Although Ethan can't tell us, I think he misses them too. He's not been feeling all that well the last couple of days, he may have a little virus he's attempting to fight off, but he also just seems a bit down. He may be noticing that we are sad, but also I think he is very aware, in his own way, that the sisters are gone.<br />
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It is our desire to continue to be involved in their lives in some capacity, perhaps transitioning into a role similar to that of extended family (example: "Aunt" Pam, "Uncle" Jeff, and "cousin" Ethan) over time, and at this point the girls' parents seem very open to that. They seem to recognize how deeply we love their daughters and how much their daughters love us in return, and that children really can't have too many "relatives" that love them.<br />
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How can you pray for us?<br />
*Pray that our family will continue to adjust to our new normal. The house is so quiet and we miss the girls so much.<br />
*Pray for the girls and for their parents and extended family. Pray for salvation, restoration, and safety. Pray for them as they continue to adjust to their new normal in a new city. Pray for the teachers that will be working with the girls at their new schools and that their hearts will be soft and understanding.<br />
*Pray that we will continue to be able to be involved in the girl's lives in a way that is positive for all of us.<br />
*Pray for us as we still feel a deep desire to add to our family through adoption, but don't think that we can go through saying goodbye to children who we have loved as our own again. While it is true that there are over 100,000 children waiting to be adopted out of foster care (see <a href="https://www.adoptuskids.org/meet-the-children/children-in-foster-care/about-the-children" target="_blank">Adopt US Kids</a> for more information), because of Ethan we have to be very careful about the child or children who we would welcome into our home. Ethan's safety and well being remains a top priority, and we cannot knowingly invite a child or children into our home who are likely to harm him. We also cannot say "yes" to a child or children who we will not be able to care for properly due to Ethan's needs.<br />
*Pray for the more than 100,000 children in foster care (see above) who desperately need forever families. Pray that families that are able to properly care for them will open their hearts and homes to these children and that they would not age out of foster care. Pray that the family and friends of these foster and adoptive families will rise up and support them as they seek to be the forever family for children who have experienced more than any child ever should. Every child deserves a family, but every family also needs a village!<br />
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-84355505012873036982018-05-14T14:34:00.001-05:002018-05-14T20:48:25.012-05:00So much and so little to write about...When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.<br />
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So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the <a href="http://www.thegfpd.org/" target="_blank">Global Foundation for Peroxisomal Disorders (GFPD)</a>. </div>
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We love our son, but hate the disease that has and continues to steal so much from our son and our family. We are thankful for those who have come alongside our family and who continue to pray for us.<br />
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Additionally, for almost two years we have been foster parents to two children who we have come to love as our own, who are in the process of being reunified with their birth parents. </div>
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<span style="text-align: start;">Due to confidentiality we aren't able to share much about them and the ups and downs of our family of five since they came to live with us in the summer of 2016. However, I will say that Ethan also loves the sisters very much, in his own way, and that we are all going to be devastated when we no longer live together. We really believed that we would be a forever family and although at times I still want to pray for that, I find myself praying more and more for the girls' future, their safety, that they would one day come to know Jesus as their Lord and Savior, that we would still be able to have a relationship with them after they return home and perhaps most importantly for the salvation of their parents. Daily we pray for their family of origin to be radically transformed by the grace, forgiveness, and love of God.</span></div>
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How can you pray for us?</div>
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<li>Pray for Ethan's health and for better control of his epilepsy and that he would continue to grow and make progress in his communication and mobility.</li>
<li>Pray for the discovery of effective treatments and ultimately a cure for peroxisomal disorders and for all of the medical professionals and scientists who are dedicated to finding ways to improve the quality of life of our kids.</li>
<li>Pray for other families like ours -- families impacted by rare disorders, disability, those in the trenches of fostering and/or adopting, families loving children from hard places, families who are grieving (for any number of reasons).</li>
<li>Pray for the children who are in foster care and for their birth families. Pray that children would not be stuck in the system one day longer than truly necessary, that children would find permanency in either loving adoptive homes or back with birth families in situations that have been radically transformed and are now healthy and safe for them. </li>
<li>Pray for Jeff and I. Pray that we will seek God's will for our lives and our family and be the parents that all three of our current children need us to be, each day that they are with us. Pray that we would understand and see what God's plan is as we continue to desire to add to our family, even if ultimately that doesn't mean we get to adopt "our girls." </li>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-10659765790963507042017-09-22T13:23:00.003-05:002017-09-22T13:26:11.368-05:00#PauseForPBD -- October 5, 2017<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: white; font-family: "times" , "times new roman" , serif;"><span style="font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">October 5</span><span style="font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: super; white-space: pre-wrap;">th</span><span style="font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> is a special day for our family as we celebrate </span><span style="font-style: italic; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">#PauseForPBD</span><span style="font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, the annual awareness day for <a href="http://www.thegfpd.org/" target="_blank">The Global Foundation for Peroxisomal Disorders (GFPD)</a>. </span><span style="font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>[Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.]</i></span></span></div>
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<span style="background-color: white; font-family: "times" , "times new roman" , serif;"><span style="color: black; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, </span><span style="color: black; font-style: normal; font-weight: 400; vertical-align: baseline; white-space: pre-wrap;"><u>living</u></span><span style="color: black; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> worldwide with Peroxisome Biogenesis Disorder (PBD). Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure. </span></span></div>
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<span style="background-color: white; font-family: "times" , "times new roman" , serif;"><span style="vertical-align: baseline; white-space: pre-wrap;">However, </span><span style="font-style: italic; vertical-align: baseline; white-space: pre-wrap;">#PauseForPBD,</span><span style="vertical-align: baseline; white-space: pre-wrap;"> is a day that brings our family hope as we celebrate The Global Foundation for Peroxisomal Disorders (GFPD). The GFPD is an international non-profit organization incorporated in 2010, that </span><span style="vertical-align: baseline; white-space: pre-wrap;">raises funds for research, promotes awareness, and supports families affected by PBD and related peroxisome disorders. On October 5</span><span style="vertical-align: super; white-space: pre-wrap;">th</span><span style="vertical-align: baseline; white-space: pre-wrap;">, we are commemorating the GFPD’s annual awareness day, </span><span style="font-style: italic; vertical-align: baseline; white-space: pre-wrap;">#PauseForPBD</span><span style="vertical-align: baseline; white-space: pre-wrap;">, and celebrating all that the GFPD has accomplished in the last 7 years in moving towards a cure for PBD. Most importantly, #</span><span style="font-style: italic; vertical-align: baseline; white-space: pre-wrap;">PauseForPBD</span><span style="vertical-align: baseline; white-space: pre-wrap;"> celebrates the beautiful children affected by this rare, terminal condition.</span></span><br />
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<span style="background-color: white; font-family: "times" , "times new roman" , serif;"><span style="font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Raising public awareness truly makes a difference. It gives families hope and can lead to new, life-saving treatments. I encourage everyone reading this to get involved by visiting the GFPD website: www.thegfpd.org. or finding us on <a href="https://www.facebook.com/GlobalFoundPD/" target="_blank">Facebook</a> and twitter @globalfoundpd or Instagram @thegfpd to learn about </span><span style="font-style: italic; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">#PauseForPBD</span><span style="font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and what you can do to support individuals and families impacted by PBD-ZSD and related peroxisome disorders. </span></span></div>
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The purpose of #PauseForPBD is to share, support, give, and remember. There are so many ways to do this. Here are just a few examples:</span></span><br />
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<span style="font-family: "times" , "times new roman" , serif;"><b><u>Pause for individuals and families affected by PBD-ZSD and related peroxisomal disorders</u></b>.</span></span><br />
<span style="background-color: white; font-family: "times" , "times new roman" , serif;">Release a balloon, say a prayer, light a candle, meditate, have a moment of silence... be creative! Reflect, honor and remember a loved one impacted by PBD. Share your experiences in words, photos or videos <a href="https://www.facebook.com/events/498817110470785/?acontext=%7B%22ref%22%3A%22106%22%2C%22action_history%22%3A%22null%22%7D" target="_blank">here</a> and on your own Facebook, Instagram or Twitter accounts and be sure to #PauseForPBD Thursday, October 5, 2017!</span><br />
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<span style="font-family: "times" , "times new roman" , serif;"><u><b>Tell others about the GFPD.</b> </u></span></span><br />
<span style="background-color: white; font-family: "times" , "times new roman" , serif;">Help spread the word about what the GFPD is doing for families impacted by PBD-ZSD and related peroxisomal disorders. #GFPDisFamily #GFPDisResearch #GFPDisHope</span><br />
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<span style="font-family: "times" , "times new roman" , serif;"><b><u>Wear what you care about. </u></b></span></span></span><br />
<span style="background-color: white; font-family: "times" , "times new roman" , serif;">Purchase a limited edition #PauseForPBD t-shirt or other GFPD merchandise from the GFPD shop at: <a href="http://www.thegfpd.org/shop">www.thegfpd.org/shop</a>. Shirts ordered by Thursday, September 28th will arrive by October 5th!<br /><br /><u><b>Buy cookies!</b> </u></span><br />
<span style="background-color: white; font-family: "times" , "times new roman" , serif;">For the second year in a row, <a href="https://www.okcookiemomster.com/menu" target="_blank">OKCookiemomster</a> is supporting the GFPD with 2 cookies with 100% of the proceeds going toward the GFPD! The last day to order fro SHIPPING outside of Tulsa is Wednesday, September 27th! Call 918-551-6888 to order or email okcookiemomster@gmail.com</span><br />
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<span style="font-family: "times" , "times new roman" , serif;"><b>Donate! </b></span></span><br />
<span style="background-color: white; font-family: "times" , "times new roman" , serif;"><a href="https://www.thegfpd.org/donate" target="_blank">Online</a> or by mail. </span><br />
<span style="background-color: white; font-family: "times" , "times new roman" , serif;">The Global Foundation for Peroxisomal Disorders</span><br />
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<span class="color_2" style="border: 0px; color: black; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: white; font-family: "times" , "times new roman" , serif;">5147 South Harvard Avenue</span></span></div>
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<span class="color_2" style="border: 0px; color: black; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: white; font-family: "times" , "times new roman" , serif;">Jeff and Pamela </span></span></div>
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-51147622498298744952017-07-21T16:36:00.000-05:002017-07-21T16:59:11.613-05:002017 GFPD Conference RecapOn July 13th and 14th over a hundred scientists, clinicians, and students came to Washington D.C. to attend a conference focused on the <a href="https://www.thegfpd.org/2017-scientific-conference" target="_blank">Development of Therapies for Peroxisome Biogenesis Disorders</a>. The keynote speaker was Dr. Francis Collins, the Director of the <a href="https://www.nih.gov/" target="_blank">National Institutes of Health (NIH)</a>.<br />
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As a parent of a child affected by PBD-ZSD it is hard to adequately describe how much it means to know that there is growing interest in finding treatment for rare diseases.<br />
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In addition to the scientific portion of the conference was a separate conference designed specifically for families. More than 40 families from the US, Canada, and the Netherlands came together in the largest <a href="http://www.thegfpd.org/" target="_blank">GFPD</a> Family Conference to date. Check out the welcome video below.<br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/uE64vJQG2LU/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/uE64vJQG2LU?feature=player_embedded" width="320"></iframe></div>
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Jen Kerckhoff, a fellow GFPD Board of Directors member, wrote a wonderful article about her experience which you can read on the <a href="http://www.tulsakids.com/Tulsa-Times-Two/Web-2017/GFPD-Changed-My-Heart/" target="_blank">TulsaKids</a> blog. Jen is one of just two members of the Board of Directors who is not a parent of a child who has been diagnosed with PBD-ZSD, which gave her a unique "outsiders" perspective as she attended her first GFPD conference.<br />
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Saturday, Sunday, and Monday were packed full of information --- scientific updates, medical information, educational resources, understanding and dealing with the grief that comes with this diagnosis regardless of if your child is still living or has already passed --- and time with with others who simply "get it." You can check out the full schedule of events <a href="https://www.thegfpd.org/2017-family-scientific-conference" target="_blank">here</a>. As I headed to the airport on Tuesday morning it was hard to believe that our time together had once again come to an end.<br />
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When we attended our first GFPD conference in 2011, Ethan was one of the youngest in attendance. Due to circumstances beyond our control, this year I went to the conference along and Jeff stayed home with the kids, but don't worry he had lots of help from the grandparents and the kids had a blast without mom around. However, the fact is that Ethan is becoming one of the "older" kids. Ethan turns seven in less than a week! Yes, there are children and young adults with PBD living into their teens, 20s, and even thirties, but the reality is that most children with PBD do not have that long here on earth.<br />
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There are some really exciting things happening in the development of treatment options for PBD right now, but when your child is fighting a disease like PBD, hearing that we are still potentially years away from major treatment breakthroughs is tough. Thankfully, the GFPD, our families, and "our" scientific community are all excited about the future and want to see potentially life-changing medical breakthroughs come to clinical trials as soon as possible. Continuing to move the science forward is going to continue to require a sacrificial amount of time, talent, and treasure.<br />
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Since moving to Peoria in the summer of 2014 our family has not hosted a fundraiser for the GFPD. While we are so grateful to the many family and friends who have made generous donations to the GFPD in honor of Ethan and for birthdays or special occasions/awareness days like #PAUSEforPBD day, etc. it just isn't the same as rallying a local community around the cause. When we lived in Decatur we had a great success with our Pancakes for PBD all you can eat pancakes and sausage breakfast thanks to our wonderful church family at FBC-Mt. Zion and all our family and friends in the area. However, we both had much deeper roots in the community then we do here, and even after being here for a few years, we simply don't feel like we have the connections, insight, time, and energy needed to organize a successful fundraising event without a lot of help.<br />
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So, in addition to your prayers which we are always appreciative of and will always need, we also are once again asking if you have any time, talents, or treasure that you could possibly share with our family and our GFPD family. None of us can do this alone and we need everyone's help. You can learn more about the GFPD and find out ways that you can get involved at <a href="http://www.thegfpd.org/">www.thegfpd.org</a>.<br />
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#GFPDisFamily #GFPDisResearch #GFPDisHope</div>
<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-21270669963370106882017-06-03T22:34:00.001-05:002017-06-03T22:37:25.279-05:00First Hospital Stay of 2017<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
<span style="font-family: inherit;">Ethan was diagnosed with strep throat on Monday, May 22nd. He was prescribed a 10 day antibiotic which finished up Thursday (June 1st). Thursday night we had to administer his rescue medication to stop his seizures and we had to do this again Friday morning. After giving him the rescue medication on Friday morning I took him to the ER.</span></div>
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We were admitted and spent the night. Blood and urine samples were "okay," but the nasal swab was positive for a cold virus. So, sometime during the treatment of the strep throat Ethan also caught a cold. He is still extremely lethargic, but we didn't see any seizures today. We got home around 5pm this evening. </div>
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Jeff did an amazing job holding down the fort here at home while I stayed at the hospital and I'm very thankful for the friends that helped out yesterday so that Jeff could come visit us for a bit.</div>
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Prayers for Ethan's continued recovery and for no more breakthrough seizures is greatly appreciated.</div>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-87616398047267085352016-11-20T11:20:00.000-06:002016-11-20T11:20:09.943-06:00Sick. Seizures. Sick of Seizures.Ethan's continuing to fight the "bug" that has been plaguing him for more than a week now. The cough isn't going away, and I'll be calling the doctor tomorrow.<br />
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Yesterday, I had to use Ethan's rescue medication in the first time since May. While the seizures have returned over the last couple of weeks, we weren't seeing them every day and they hadn't started to cluster until yesterday afternoon. I am thankful that the diastat stopped them, but I hate that I had to use it. The diastat really kicked his butt yesterday and he slept for more than 4 hours. It finally got late enough that we had to wake him, which was hard because he was so groggy, but eventually he woke up.<br />
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Although we were concerned that Ethan might be up all night, he wasn't and slept really well until around 5:30am, which isn't bad considering that since the time change he has been consistently waking up between 5:00 and 5:30am. Ethan and I stayed home from church this morning and sent Jeff and the girls as our representatives. Ethan's been napping for a while. This bug, whatever it is really needs to go away!<br />
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-1846190814932865802016-11-14T09:39:00.003-06:002016-11-14T09:39:58.249-06:00Seizures are back. Operation Christmas Child. Sick Kids. Friends Hospitalized. Ethan's been back on the full dose of Topamax for more than a week. Unfortunately, the seizures are still breaking through. I called the Epileptologist's office on Friday, and he instructed us to increase the Charlotte's Web from 9 drops twice a day to 12 drops twice a day for a week to see if that would help. If they are still breaking through we are then to increase the Charlotte's Web to 15 drops twice a day. Friday evening we began the increased dose. So, we'll know wait and see what happens. Friday we witnessed 4 seizures, Saturday we saw 2, and Sunday we have seen 2. Thankfully, they are all relatively short, just 5 to 10 seconds each, and so far they have not clustered, but it's still awful. I hate seizures.<br />
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"Big sister" saw one Sunday, while we were all at the table for lunch, and was surprisingly calm about it. Sometimes it is hard to believe that she has only been in our home since June. She has become a tiny little advocate and ambassador for Ethan. Yesterday, she introduced Ethan to Children's Church when he and his helper went in there so Ethan could listen to the music. In her own way she seems to understand that Ethan is special and different than everyone else, but you can still tell that she wishes he wasn't. Yesterday afternoon she asked me if Ethan would have a job when he grows up. I told her probably not and that he'd probably always live with us. I asked if that would be okay, she said yes. "Little sister" doesn't seem to notice or care. Sometimes she's really gentle with Ethan, other times she is rough -- or otherwise, being a pretty typical sibling! Mostly, she's too busy being jealous anytime she isn't the center of attention. She is 2 after all.<br />
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On Saturday we ventured out as a family to shop for our <a href="https://www.samaritanspurse.org/what-we-do/operation-christmas-child/" target="_blank">Operation Christmas Child Shoeboxes</a>. We have done these for several years, and have always done one for a child Ethan's age, so this year we put together one for each of the kids. "Little sister" was very upset that she didn't get to keep the dolls, but "big sister" seemed to understand that the items would be going to children somewhere in the world that needed them and that blessing others is one way that we can worship God. </div>
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All three kiddos have been fighting some bug, but it seems to be on it's way out, or at least I hope so. We had a very long family visit to the pediatrician on Thursday afternoon and ruled out ear infections and strep throat. No one ran a temp, but everyone had coughs, sore throats, drainage, and snot. Energy levels seem back to normal so "big sister" is headed to school today, but Ethan's staying at home with me and "little sister." His cough is still pretty nasty and he woke up with diarrhea.<br />
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This past week was a tough week for so many of our friends. Several of Ethan's PBD-ZSD buddies have been in the hospital, thankfully at least one if not two of them have made it home already. Our friends who recently returned home from China with their newest addition have also spent almost every day since their return in the hospital with their little one. You can follow their story <a href="http://wearemarquettefamily.blogspot.com/" target="_blank">here</a>. As the fall fades and the winter begins it is likely that both our family and so many others will face more times of illness. The winter months are hard on everyone, especially children and adults with compromised immune systems.<br />
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My heart has been heavy all week. We've been battling Ethan's seizures, the kids have been sick, the election didn't turn out how we thought it would, so many of our friends' children are having health issues, and there are some import upcoming dates related to the girls. Prayer is greatly appreciated. </div>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-71016406183154002682016-11-04T13:38:00.001-05:002016-11-04T13:49:23.428-05:00Good News, Bad NewsLast Thursday we made the trek to Iowa City to see Ethan's epileptologist. We are very thankful that Dr. Ciliberto is part of Ethan's team. Not only is he a wonderful doctor who seems to truly love working with kids, his undergraduate degree is from the University of Illinois, Jeff's alma mater.<br />
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Dr. Ciliberto was excited to see how well Ethan is doing and how alert he is no that he is no longer on phenobarbital. In terms of seizure control it has been a really good summer and fall for Ethan, since we added Charlotte's Web hemp oil to his regimen, got off of Banzel, and got off of phenobarbital. It is like our little boy woke up again. Which of course makes sense since some of most common side effects of phenobarbital are: sleepiness or fatigue, depression, dizziness, upset stomach, memory problems, and trouble paying attention.<br />
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Since Ethan has been doing so wonderful, we talked with Dr. Ciliberto about the possibility of weaning Ethan off of Topamax as well to see if there would be even more improvement in Ethan's alertness, activity level and overall well being. Common symptoms of topamax include fatigue or drowsiness, difficulty with concentration, confusion, dizziness, unsteadiness, nervousness, depression, difficulty with memory and loss of appetite. The doctor was completely on board with giving it a try and provided us with a schedule to slowly wean Ethan off of topamax over the next months.<br />
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So, last Friday morning we began the wean. Instead of the regular morning dose of 100 mg, Ethan received only 75 mg. Unfortunately, late that afternoon after school, Ethan had a small seizure. His first one in months! Obviously, we were disappointed and discouraged. So, we increased the Charlotte's Web dose, by a drop morning and night, and stopped the wean over the weekend. We started again on Monday morning and sadly Tuesday evening Ethan had two short seizures. I called Dr. Ciliberto's office on Wednesday morning and spoke with the nurse. We decided to keep the wean dose until we heard back from the doctor. Yesterday the nurse called back and the doctor ordered for us to stop the wean, return to the normal dose, and that we could try to restart the weaning process in a month if there were no more seizures after returning to the regular higher dose.<br />
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I'm trying to not be to disheartened but it is hard. Perhaps Ethan will always be on multiple antiseizure medications. He in on topamax and keppra as well as Charlotte's Web hemp oil. Maybe I was just getting too caught up in how successful the Charlotte's Web has been and was just hoping and praying that we could wean him off of all the antiseizure medications and keep the seizures in check simply with Charlotte's Web.<br />
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It is hard to believe that is was around this time last year that Ethan's seizures came back and started an 8 to 9 month period of constant uncontrollable seizures, multiple hospitalizations, ambulance rides from school, administering emergency medication at the drop of a hat --- even upon our arrival at the Tee It Up for GFPD pre-event reception in May, and fearing that a seizure would be the cause of my son's death.<br />
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This morning on the way to Ethan's school on of my "theme songs" was on the radio, Lauren Daigle's "Trust in You." While I will readily admit that my daily walk with the Lord is far from where it should be, and that my witness for Him is something that is probably pretty dismal, at best most days, this song is an anthem that rings true deep in my heart and soul. I'm a mess, but I'm His mess. I fail Him every single day in so many ways, but I do truly trust that God still loves me. He still loves my son even more than I can even imagine and that ultimately I can trust Him.<br />
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Another favorite theme song of mine is Casting Crown's "Praise You in This Storm."<br />
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Honestly, I don't always do a very good job of praising the Lord through the storms, but I desperately want to. Over the last six plus years the storm of PBD has continued to rage around us. As we have grown close to others in this storm it has become easier to cope but the strength of the storm has in some ways, intensified as we see people who we have come to love and consider family lose a child and know that without a miracle -- spiritual and/or medical in nature, that one day we too will experience that same loss and grief. Ethan is just a few months short of being the same age that one especially dear friend's daughter was when she was healed forever, by the Great Physician. This is never too far from my mind, and I don't know if my friend knows this or not, but seeing her praise Him still, is something that gives me hope. I am thankful to have this friend and so many others in my life who have continued to praise Him in the aftermath of losing a child to this horrible disease. I still may hate PBD-ZSD, but I love my GFPD family.<br />
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<u>Prayer Requests</u><br />
Please pray that:<br />
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<ul>
<li>I would seek to praise the Lord in the many storms that we are facing, more than I complain about them.</li>
<li>Ethan will remain seizure free and for his overall health. I haven't stopped praying for a miracle that will improve the quality of life of my son, and I hope that you won't either.</li>
<li>The scientists, researchers, physicians, studying PBD-ZSD would continue to have the wisdom and the tools needed to make discoveries and breakthroughs that would improve the quality of life for individuals with PBD-ZSD.</li>
<li>Family members, friends, and acquaintances who do not yet have a relationship with Christ would have soft hearts and minds and would come to know Jesus as their personal Lord and Savior. </li>
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-54223917913517219472016-10-03T15:04:00.001-05:002016-10-04T15:50:31.517-05:00The Life I Never Expected....When I was pregnant with Ethan there were several other women in our church who were also expecting and/or already parenting young children so it was decided to bring <a href="http://www.mops.org/" target="_blank">MOPS</a> to our church. After Ethan's birth and diagnosis I only attended a few meetings before I simply couldn't put myself through it anymore. My experience as a new mom of a medically complex, severely disabled child due to a rare genetic disease and the overwhelming grief that accompanies this "journey" made it too difficult to be surrounded by so much "normal."<br />
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As time passed I connected with a couple of other moms in my area who had children with special needs. This small group of women became a lifeline and their children became some of Ethan's first "friends." A few of us even participating in a panel discussion for the MOPS group, that I had previously dropped out of, where we shared our stories and answered questions.<br />
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Over the last six years I have removed myself from most "normal" parent activities. It is an act of survival. Things like helping out with Vacation Bible School, attending storytime at the library, even trips to the zoo and park, aren't nearly as fun when your child can't participate and/or enjoy it and you know he'd much rather just be at home with his lights and sounds toys. The "normal" stuff is extra hard on my emotions sometimes, it is impossible to not think of all the things that PBD has and continues to steal from Ethan and us as a family. The longing for Ethan to be healed has never gone away. We love him, but we hate PBD.<br />
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Fast forward to this summer. We are currently fostering two beautiful little girls. Although each have their own unique set of challenges due to what they have experienced in their young lives they are much more typically developing than Ethan and so we are for the first time doing a lot of the "normal" parenting stuff. I even had the insane idea that in the Fall I should try out the moms group at our church.<br />
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I don't know what I was thinking. It was a disaster. I didn't make it through the opening getting to know you activity before I exited stage left in a mess of ugly tears. I was embarrassed, upset, and hurt. A couple of ladies that I didn't know tried to comfort me, but I wasn't ready. I'm not sure I'll ever be ready for being around so much "normal."<br />
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A week or two after the "incident" I came across the book, "The Life We Never Expected: Hopeful Reflections on the Challenges of Parenting Children with Special Needs" by Andrew & Rachel Wilson in our church library. I wasn't looking for it, but when I saw it on display it just sort of popped out at me. I'm not completely finished yet, but I have to say that I really like this book and I wish that all the "normal" parents out there would read this book (or something similar) to get a glimpse into the world of parenting a child who is disabled. <br />
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The chapter, <i>The Unresolved Why?</i>, is particularly powerful. After providing three different insights that have helped him (Andrew) cope with the unanswered questions he concludes:<br />
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"I don't know why God permits so many bad things to happen, but then I wouldn't expect to -- I live in the confident hope that he will one day renew the world, so that even the darkest and most terrible evils of this world will be undone and swallowed up in victory. And I can look at the face of Jesus and remember that, whatever the reason for suffering, it certainly isn't because he doesn't care. Questions still linger, and tears still fall. They probably always will. In the meantime, though, I trust, and hope and wait." (pg. 81).<br />
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Additionally, the authors of the book happen to be from England, which adds a bit of a different perspective to the book than those written and likely read by the majority of Evangelical American Christians, because their country is so different than ours when it comes to services for individuals with disabilities and their families as well as public education and healthcare in general.<br />
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"We are hugely grateful to live in a nation with a welfare state, one that has poured literally tens of thousands of pounds into the health care, education, and therapy into our children already, and will pour in many times that over the coming years......We count it an enormous blessing to live in a society with welfare and benefits and special schools and blue badges (parking passes for those with mobility challenges) -- especially since we have friends with autistic children in nations that don't have any of these things -- and we think it's just good sense to get whatever help in available. I apply for whatever I might think might help my children thrive, and that means I've filled out more forms than a Soviet bureaucrat. But as soon as I start thinking of those things as rights, which I deserve (rather than, say, thinking of them as gifts, since I could easily have been born in Turkmenistan), I open the door in my soul to bitterness, irritation, and frustration. And that kills thankfulness. And when thankfulness dies, so do I." (pgs. 68, 84)<br />
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I have a lot of the bitterness, irritation, and frustration. Afterall, I do live in the state of Illinois. When you live in a state that is as bad as mine when it comes to almost everything and is number 1 in all the wrong things (<a href="https://www.washingtonpost.com/blogs/reliable-source/post/whats-the-matter-with-illinois-with-blagojevich-conviction-state-has-most-imprisoned-governors/2011/06/28/AGZVjnpH_blog.html" target="_blank">such as having the most governors sent to prison</a>, <a href="http://www.chicagotribune.com/ct-sta-kadner-sudies-st-0327-20150326-column.html" target="_blank">having the most unfair public school funding system in the nation</a>, <a href="http://www.centralillinoisproud.com/news/local-news/illinois-has-highest-property-taxes-in-the-country" target="_blank">having the highest property taxes in the country</a>) it can be pretty hard not to be bitter, irritated and frustrated most of the time. According to "<a href="http://cfi.ucp.org/state-scorecards/" target="_blank">The Case for Inclusion 2016</a>," an annual report which ranks how well State Medicaid programs serve Americans with intellectual and developmental disabilities (ID/DD), Illinois ranks 47th out of 51. <br />
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Living in Illinois aside, the majority of my bitterness, irritation, and frustration is because of PBD and the impact that it has on our son, our family, and so many others. Andrew Wilson states that, "Finding out your children have special needs is kind of like being given an orange" when everyone else is given chocolate (pg. 33). Andrew spends three pages on this analogy to ends with this:<br />
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"So there are times when we're wiping the citric acid out of our eyes and watching our friends enjoying their chocolate, when it feels spectacularly unfair, when we wish we could retreat to a place where everyone had oranges, so we wouldn't have to fight so hard against the temptation to comparison shop and wallow in self-pity. We know that oranges are juicy in their own way. We know that they're good for us and that we'll experience many things that others will miss. But we wish we had chocolate all the same. In our case, that feeling has become less acute and less frequent over time. Our appreciation for the wonders of tangy citrus and vitamin C has increased, and our desire for milk fat and cocoa butter has diminished. But in our story, so far, it hasn't disappeared. I'm not sure that it ever will. And that's okay." (pg. 36)<br />
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I admit, I have a lot of moments (or days), even six years into this, like that Friday morning last month when I had to leave the moms' group because I couldn't seem to be able to wipe my eyes of the citric acid. But, there are other moments (and days) that aren't so bad, where the ever present citrus scent isn't completely overpowering. When I look at my husband being swarmed by Ethan and the girls, everyone with smiles on their faces and laughter filling the air, the amount of love present, so intertwined with grief of many kinds, is somewhat overwhelming. This is definitely not the life I expected, but this is my life and I know that I need keep trusting, hoping, and waiting.<br />
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-79957275772214427712016-08-20T16:17:00.000-05:002016-08-21T16:19:33.470-05:00Diagnosis Day --- Six Years LaterSix years ago today (August 20, 2010) our lives were forever changed. On that day that our beautiful precious 28 day old son was diagnosed with PBD-ZSD (Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder). It was the day that we learned of a disease that we wish to this day that we never had to find out about.<br />
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I know I'm not the person --- the individual, the wife, the mother, the daughter, or the friend that I would have been if Ethan had been healthy. Most days I'm pretty sure I'm not a better person but rather a more bitter person because of the pain and suffering that comes along with a diagnosis like PBD-ZSD.<br />
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I have read more about pain and suffering, the will of God, God's sovereignty, the brokenness of the world due to sin, and the trials of life than I think I ever would have otherwise. I do not doubt that God is ultimately in control, but I still hate the saying, "everything happens for a reason," and other cliches, many which are not Biblical at all, like "God won't give you more than you can handle." I fully believe there is a difference between being able to have joy and hope and being happy. I still struggle with discontentment and resentment every single day, because I'm a mom who deep in my heart still wants a miracle for my little boy to be "normal" and "healthy" and I know without a shadow of a doubt that the Lord has the power and ability to heal Ethan, however I have to be "okay" with the fact that Ethan's healing may not occur on Earth. Sometimes I still can't help but wonder and question not only "why Ethan," but "why any child or any family" has to endure so much.<br />
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Yet, through it all, there are things I'm thankful for --- I have a husband who has stood by us when so many others don't. I know that we are blessed to have him in our lives. I know that Ethan is loved by his family and many others. There are people who have chosen to love our family and "do live with us" and actively try to "understand" the messiness and hardships that come with this life changing diagnosis. I have met some of the most amazing, bravest, strongest people in this world, although honestly I wish we had never had a reason to meet. I have the honor of serving other families like ours through the Global Foundation for Peroxisomal Disorders and because of the GFPD we have met many of the world's top PBD-ZSD specialists, who know Ethan by name! Over the last six years we have been very fortunate to have amazing doctors, therapists, nurses, teachers, and others who have helped us help Ethan. I have not let PBD-ZSD rob me of my faith, although there are times even now of great struggle and when God feels so far away. I believe in all my heart that God has not abandoned us and that He loves Ethan even more than I can imagine. While I may always have questions about "why" this side of Heaven, I have faith that someday my son will be healed forever and that because of what Jesus did on the cross that I can find peace, rest, and assurance in His promises.<br />
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Today, six years after receiving the most devastating news in my life and what I'm pretty sure will be the worst day of my life except once that has yet to occur I pray:<br />
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<ul>
<li>I pray for the day in which a family who receives a PBD-ZSD diagnosis is told that there are effective treatment options and/or a cure.</li>
<li>I pray that life changing treatment options will be discovered in time to help Ethan.</li>
<li>I pray for the doctors and scientists who have dedicated themselves to understanding this disease and are searching for ways to improve the quality of life for individuals with PBD-ZSD.</li>
<li>I pray that families impacted by PBD-ZSD who have yet to connect with other parents who "get it" will find the GFPD.</li>
<li>I pray for the leadership of the GFPD and every family that is part of the GFPD.</li>
<li>I pray for the amazing therapists and teachers who dedicated themselves to working with and helping kids like Ethan.</li>
<li>I pray for Jeff and I to have the strength/energy, wisdom, and peace needed to continue being the parents we need to be for Ethan.</li>
<li>I pray for Ethan, his health and his development. I pray that he would be happy and most of all know that he is loved.</li>
<li>I pray for the two little girls who currently share our home and have already stolen a piece of our hearts, whose stories are yet to unfold. Their presence in our family is obviously bittersweet in so many ways as it is undeniably intertwined with grief (both theirs and ours) but we are so happy that they are here.</li>
<li>I pray for the church as a whole to do a better job at recognizing the needs of families who foster and/or adopt and those who are impacted by disability and be the hands and feet of Jesus to these families. </li>
<li>I pray that if there is anyone who reads this that does not yet have a personal relationship with Jesus, that they would come to know Him and the type of peace and hope that only He can provide. </li>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-83745562344237871212016-08-02T15:39:00.002-05:002016-08-06T20:53:09.908-05:00Summer Update<br /><br />June and July have been very busy for us and full of changes for our family.<br /><br /><br />The first weekend of June I flew to Baltimore, MD for a GFPD Board of Directors meeting. While there I was also able to attend the meeting of the GFPD Scientific Advisory Board and the Ilan-a-thon. I left that weekend very proud of how much the GFPD has accomplished in less than six years and excited to see what will happen next. Please read "<a href="http://www.thegfpd.org/#!Update-from-the-Annual-GFPD-Scientific-Advisory-Meeting/c1m5p/576aad000cf27c385a7354d0">Update from the Annual GFPD Scientific Advisory Meeting</a>" and "<a href="http://www.thegfpd.org/#!More-than-a-Race-Ilanathon-is-a-Celebration/c1m5p/577bec3a0cf2aa035a150e1a">More than a Race, Ilan-a-thon is a Celebration</a>," for more details.<br /><br /><br />During my trip to Baltimore , which came less than 2 weeks after Ethan had his tonsils and adenoids removed, we began to make a number of changes to Ethan's anti-seizure medications. Under the supervision of Ethan's epileptologist we began to wean him off of Banzel and made plans to try Charlotte's Web hemp oil. Ethan's epileptologist runs a clinical trial for <a href="http://www.gwpharm.com/Epidiolex.aspx">Epidiolex</a>, which is a pharmaceutical cannabinoid, but his trial site, like most around the country are full and not accepting new patients at this time. Thankfully, he was on board with us giving Charlotte's Web (CW) a try and provided us with dosing suggestions.<br /><br /><br />I am happy to report that Ethan's last seizure, that we are aware of, was on June 6th. The combination of addressing his sleep apnea by removing his tonsils and adenoids and the medication changes seem to be working. Plus, after we got Ethan off of Banzel his smile and personality began to return, as did some of his balance. Ethan has been doing so well that his epileptologist has allowed us to begin weaning him off of another one of the anti-seizure medications, Phenobarbital, and we are about half way into the 7 to 8 week process. Reducing the amount of Phenobarbital has made a world of difference in Ethan's quality of live, in my opinion. He is so much happier and his mobility has greatly increased -- he's walking more everyday it seems. Yes, it is just short distances, but we are so thankful that the "fog" has seemed to be lifted and that as of today we have not seen any seizure activity. Ethan's epileptologist is wonderful and if the seizures return then we are to call and he is going to suggest increasing the Charlotte's Web and seeing if that will do the trick without having to go back up on Phenobarbital. <br /><br /><br />Since Ethan had speech therapy, physical therapy, and occupational therapy services through the school district during June and early July in addition to his regular outpatient therapies at Easter Seals, many of the therapists that he works with have seen the improvement in Ethan's alertness, willingness to participate in therapy, his mobility, and his mood. The effects of PBD-ZSD on our little boy are still very clear, and he still tires easily and therefore typically takes a good nap everyday, but overall we are just so happy to have Ethan "back" to about where he was at last Fall.<br /><br /><br />In addition to getting seizures under control, we celebrated Ethan's 6th birthday last month. We actually celebrated it three times: once with my extended family in Southern Illinois the weekend before his birthday; we had our parents, 3 great grandparents, an aunt, and 2 cousins all over at our house on Ethan's actual birthday; and the next day we had an open house style party at our church for our friends here in the area. Ethan turning 6 was both wonderful and heartbreaking for me, but nevertheless we tried to look on the bright side of things and use it as an opportunity to not only celebrate our son but to give back to the GFPD, who has given us so much.<br /><br /><br />Here is my Facebook post on the day of Ethan's birthday:<br /><br />Today is Ethan's 6th birthday!<br />Last night I went to the store to get things for our parties/celebrations this weekend. I was doing "okay" until I started looking for a card, picking out "birthday plates"and looking for a gift.<br /><br />Ethan doesn't understand It's his birthday, doesn't know what a card is and/or have a favorite color/theme that he has begged us to incorporate into his party. He doesn't know what cake is and probably won't even taste a bite of ice cream, when we offer it to him. I have to go to the "baby toy" aisle for a gift for my 6 year old.<br /><br /> When I got home last night I just lost it, I mean ugly uncontrollable cry lost it. I was thankful that a dear friend was here, she had dropped something off, and she let me fall apart.<br /><br /> I hate this disease so much. I know in that I'm fortunate that I can still hold my boy and that at moment his health is "stable," considering his diagnosis. Yet, the desire to have my little boy be "healed" and "normal" doesn't ever go away. It still hurts and sometimes the feelings are so raw, even after almost 6 years. I want effective, life-changing treatment options to be discovered and made available, yet the reality is that it may not happen in time to make a difference for Ethan and it won't bring back all the children who have already passed.<br /><br /><div>
If gene therapy can help Hannah and others, them maybe, someday it could make a difference for children with PBD-ZSD. Maybe a more "traditional" treatment like a bone marrow transplant or even a medication/pharmaceutical drug will make a difference in the quality of lives of those with PBD-ZSD, but there is still so much to be done to find out. The GFPD is determined to help support the researchers who are dedicated to finding ways to improve the lives of individuals with PBD-ZSD. This is one of the reasons why we are so passionate about raising awareness and funds for research. You can learn more at find ways to get involved in helping children and families impacted by PBD-ZSD at <a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.thegfpd.org%2F&h=6AQGY3dJ0AQHfguiAwAKjVIrYIxNr1K0YNPOuq4aA-o-NTA&enc=AZPKF4mzYHbRZZ6LBsl8JDU_n8dw9AZ_JzrrgBv_G2A7YdnEJqEAa7PKfZ5k3nCmah1j8ahrrdZQxVYVW47Q4UbggzKyi_o5sjdLXmaKy117QlaUcQlDNnJilyVSlWdqRWW29rQFQlc9YFaq3qjAzBalCNdEsrZWm9_FSJ36_Rlj_13bGEwm7SjNZA01fIPaFrQ&s=1">www.thegfpd.org.</a><br /><br />P.S. We feel very blessed that we have surpassed our original $600 goal for the GFPD in honor of Ethan's birthday. If you haven't yet, there is still time to donate. Thank you!<br /><br /><br />I am thrilled to report that due to the generosity of family, friends, and acquaintances we know that almost $1,500 was donated to the GFPD in honor of Ethan's birthday! We are so thankful for all who gave and for the continued support and prayers. The GFPD is so important to our family and families around the world who are impacted by a PBD-ZSD diagnosis. <br /><br /><b>Perhaps the biggest change for us is that this summer we have become a family of five!</b> We have been licensed foster parents for more than a year, and in May we agreed to meet two little girls to see if we might want to become their foster parents and their adoptive parents if that becomes a possibility someday. So, if you happen to see us out and about or hear me refer to our "children," or see me ask for parenting advice on Facebook, please know that we are still figuring things out and adapting to becoming a family of five. We have fallen hard for the two precious little girls who are in our home. There are so many blessings, challenges and it can be so bittersweet for so many reasons to have them as a part of our family, but we are so glad that they are here and that we have opened our heart and home to these little ones. We have no way of knowing how long the girls will be with us and what ultimately will happen, but as Jeff likes to say, "They will be with us until they aren't." <br /><br />For obvious reasons we are not at liberty to share much at all, but we do ask for your prayers for us and for all the children, biological families, foster families, and professionals who are in the trenches of foster care. Specifically pray for the healing of bodies, hearts, and minds and for wisdom for all involved. Please pray for our family specifically as we travel another challenging "parenting" road and learn to navigate in an entirely different "world" than we have been in with Ethan for the last six years. Please pray that we will be able to be the parents that all three of our children need us to be. For more practical ideas about how you can pray and support those involved in foster care ministries check out <a href="http://www.theforgotteninitiative.org/">The Forgotten Initiative</a> and <a href="http://www.allinfamily.org/">All In Family Ministries</a>. We are very thankful that our church has an active Foster/Adoption ministry and that we are able to connect with other families who have been and/or are going through some of the same things. <br /><br />So many of our pictures from the summer include the girls, which sadly I can not share, but Ethan has also been a bit more photogenic lately. Here's a few to leave you with:<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglBLCQwwhGMyTvCimvf4fQCABTUVErnlr6PcSSe5BiTWxv7odoArw1OJUnBe7QuE6lLSvL1hWy_3TOTI54N1-E7IYHfPyKtOLaZZ5YGPiGMIvBKK6upzwEccBzprWkbXE0e0-KaunLF1c/s1600/0703162137f%257E2.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglBLCQwwhGMyTvCimvf4fQCABTUVErnlr6PcSSe5BiTWxv7odoArw1OJUnBe7QuE6lLSvL1hWy_3TOTI54N1-E7IYHfPyKtOLaZZ5YGPiGMIvBKK6upzwEccBzprWkbXE0e0-KaunLF1c/s320/0703162137f%257E2.jpg" /></a> <br />Ethan actually "noticed" the fireworks this year! <br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioYSvzFsL0qB2RaAQoAaP6iMM45jk7cHxkdlR1qMEVgPX4gArb5HezQlJatU_DnQVFq8S0NBp-p3xG-8rvvtBE3YABhydvjgl7DH2E5mAVqziqbSPzW6pM5rZGlM2WEvF20qR9K2knY64/s1600/0707161547b.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioYSvzFsL0qB2RaAQoAaP6iMM45jk7cHxkdlR1qMEVgPX4gArb5HezQlJatU_DnQVFq8S0NBp-p3xG-8rvvtBE3YABhydvjgl7DH2E5mAVqziqbSPzW6pM5rZGlM2WEvF20qR9K2knY64/s320/0707161547b.jpg" /></a> <br />We are so happy that this guy's personality is coming back to us! <br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKWCBgkgYmDwdKtuusiU6129LeVxfqCkOftDweiXX3v8Dtq9IHmZsAVNHPeA2lVtYWzptgV0htpnWshS-gC23YauYdQ6SCONyJoKzdA_9ueLs5H9eXRPgegBvcxvA-0FJLwZ1i0jdtwg/s1600/0707161903b.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKWCBgkgYmDwdKtuusiU6129LeVxfqCkOftDweiXX3v8Dtq9IHmZsAVNHPeA2lVtYWzptgV0htpnWshS-gC23YauYdQ6SCONyJoKzdA_9ueLs5H9eXRPgegBvcxvA-0FJLwZ1i0jdtwg/s320/0707161903b.jpg" /></a> <br />Ethan's new favorite game -- ON/OFF! <br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-Ruuw9oZ-dAvGtKefhMp31K4p2EulEk_7cAPzrswWu30uX3yuI1li1Z4yBYqAl-_b2n_URuVGYKPYizWBq3k_gVz_-VJGU-g72YHXKm2w4spl0qQ9SbLH7ai4UDz827yk9twSNiqr3m8/s1600/0723161318.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-Ruuw9oZ-dAvGtKefhMp31K4p2EulEk_7cAPzrswWu30uX3yuI1li1Z4yBYqAl-_b2n_URuVGYKPYizWBq3k_gVz_-VJGU-g72YHXKm2w4spl0qQ9SbLH7ai4UDz827yk9twSNiqr3m8/s320/0723161318.jpg" /></a> <br />"It's my birthday and I'll sleep if I want too!" <br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpOIkhyphenhyphen2QrS2EuKZ3MaS4WGDOc_3o9vfavVgW20x1uLuot5MTwHFY7nKy77yEeO2qxOaSg2qDDrNuB4YuEMFkdMnRsubnkuInLzXDbefmbbp9yaFL1mGD-KoOouALIfBuqYCCApNCPiUs/s1600/0728161518a.jpg"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpOIkhyphenhyphen2QrS2EuKZ3MaS4WGDOc_3o9vfavVgW20x1uLuot5MTwHFY7nKy77yEeO2qxOaSg2qDDrNuB4YuEMFkdMnRsubnkuInLzXDbefmbbp9yaFL1mGD-KoOouALIfBuqYCCApNCPiUs/s320/0728161518a.jpg" /></a> <br />Love this smile!<br /><div class="text_exposed_show" style="display: inline;">
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-74256334626734134052016-05-31T00:00:00.001-05:002016-05-31T12:59:44.991-05:00Ethan's tonsils and adenoids are gone!<div style="text-align: center;">
The thought that Ethan might sleep apnea was first brought up to us by a neurologist in December 2015 and was verified in February 2016 through a sleep study. On Tuesday, May 24th, Ethan finally had his tonsils and adenoids removed. The hope is that their removal will help decrease the sleep apnea which in turn should reduce the seizures, since almost all of Ethan's seizures are breaking through while he is sleeping. </div>
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On Tuesday morning we arrived at the hospital at about 5:15 am for the surgery that was scheduled for 8:00 am. We were taken up to the pediatric floor and from there we were taken down to the operating room. The surgery went smoothly and afterwards we were able to see him in recovery. Ethan was in recovery much longer than what is usual simply because there were no beds available for him on the Pediatrics Intensive Care Unit / Pediatrics Intermediate Care floor. </div>
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It was after noon before we were taken to a room and things seemed to be going okay for several hours. Jeff's parents came to visit and so did two friends from church. Unfortunately a little after 3pm Ethan woke up seizing. It was just one short 30 second seizure, and the nurse was actually in the room to see it. I told her that I was worried because his seizures tend to cluster, but there was only the one seizure and then he settled back to sleep.</div>
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About 20 minutes later he had another seizure and they began to cluster one on top of the other. His oxygen level dropped and he began to turn blue. Alarms were going off and the room filled with nurses and doctors. Ethan's oxygen level dropped into the 40s --- it should be between 98 and 100 at all time. He was struggling to breath and they "bagged" him (see picture) to help force air into him and to help get him breathing again. They also administered medication through his IV that works even quicker than the rectal diastat that we give him here at home to "rescue" him. </div>
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<span style="text-align: start;">I was a complete wreck! Thankfully, Jeff was my rock and he allowed me to fall apart. I was truly afraid that this was it. His oxygen levels were slow to rise, they kept using the bag to force him to breath and then once he was breathing they started giving him oxygen through his nose (see picture). He was so out of it that it took him a few minutes before he realized that it was bothering him. By then his oxygen levels were up and they were able to wean him off and back to room air fairly quickly. I just couldn't believe what was happening to my little boy. </span></div>
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The doctors believe that Ethan was having trouble breathing and therefore had the seizure because of post surgical swelling, which can last up to <a href="http://www.entnet.org/content/tonsillectomy-and-adenoids-postop" target="_blank">two weeks</a>! Ethan was given IV steroids before the surgery, but they gave him a dose of a different stronger steroid to reduce the swelling. </div>
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After Ethan was off the oxygen and stabilized the room began clearing out. The whole ordeal lasted less than 20 minutes, but it seemed like an eternity. I'm not sure that I've ever felt so scared, except perhaps on the day Ethan was diagnosed with PBD-ZSD. I know that ultimately Ethan, like all of us, will die, but I'm not ready. </div>
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The rest of the afternoon and evening were pretty uneventful and Ethan rested comfortably. The youth pastor from our church, who we became friends with shortly after we moved here, came by to visit and pray with us. Eventually, Jeff's parents took him back to our house, so that he could get his car. Later he brought back dinner for me and once Ethan was asleep for the night he headed back home to sleep. The night went by pretty smoothly and I was able to get a little bit of rest. Sleeping at the hospital isn't fun for anyone. </div>
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Jeff came back early the next morning, followed later by his parents. One of the doctors came by and shared the good news that he thought that Ethan was doing well enough to go home later in the day. As anyone knows who has waited to be discharged from the hospital, it isn't a quick process. After rounds were completed and after calls to the pharmacy so we could get scripts for additional pain medication and steroids we headed home.</div>
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Ethan rested the majority of the day, and I decided to sleep in his room with him, which helped but my mind at ease. I also set an alarm so that I would wake up to give him another dose of pain medication at 4:00am. The ENT (surgeon) warned us, when he spoke to us after the surgery, that it was important to keep on an every 4 to 5 hour pain medication schedule for a couple of days if needed. He also said that days 5-10 after surgery can sometimes be worse than the first couple of days and that "normal" recovery time can be anywhere from a week to two weeks. </div>
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Since we know that there is very little about Ethan that is "normal" we aren't going to be surprised if it takes him a lot longer to recovery. Tomorrow will be one week since surgery. He continues to be very lethargic and not his typical happy self. There are moments that we get a little glimmer of his personality, which is nice. We are hoping and praying that once he is fully recovered from the surgery that his sleep apnea will be resolved and therefore he will be less likely to have seizures while he is sleeping. </div>
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We are also hoping and praying that then we will be able to work with his Epileptologist to see if we can reduce and/or change any of his anti-seizure medications. While, minus the episode at the hospital, he hasn't had any visible seizures since the latest increase in the Banzel, all of the medications that he is on have really affected his energy level, his stability/mobility, mood, and his overall personality. He's is currently on the highest doses possible for his size of four different anti-seizure medications (Banzel, Topamax, Keppra and Phenobarbital) all of which are taking a toll on our little man and haven't really done a very good job at keeping him seizure free because almost every week he has a really bad seizure episode that requires the use of his rescue medication Diazepam/Diastat. His "sparkle" is simply not there like it was before the seizures came back this fall and we have had to add to and increase his anti-seizure medications. Here's a look at the common side effects of the anti-seizure medications that Ethan takes:</div>
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Common side effects of <b>Banzel</b>: </div>
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headache, dizziness, fatigue, nausea/vomiting, sleepiness, double vision, trouble with balance</div>
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Common side effects of <b>Topamax</b>: </div>
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fatigue or drowsiness, difficulty with concentration, confusion, dizziness, unsteadiness, a feeling of pins and needles in the tips of the fingers and toes, nervousness, loss of appetite, depression, difficulty with memory</div>
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Common side effects of <b>Keppra</b>: </div>
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sleepiness, loss of strength and energy, dizziness, anxiety, nervousness, irritability, depression, other mood changes.</div>
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Common side effects of <b>Phenobarbital</b>: </div>
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sleepiness/fatigue, depression, trouble paying attention, dizziness, memory problems, upset stomach, anemia, rash, fever, low calcium levels/bone loss.</div>
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Common side effects of <b>Diazepam/Diastat</b>: </div>
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poor coordination, behavior changes, unsteadiness, sleepiness, fatigue, drowsiness, blurred or double-vision, dizziness.</div>
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As you might be able to imagine that when you combine all of these medications together, the side effects can be magnified. We absolutely want to do all that we can to reduce the number of seizures that Ethan has, however we also do not want to continue to have him be so drugged out that his quality of life is impacted. Everyone who knows Ethan has seen how these medications have changed our little boy, and we have to try to do something to get our boy back. We would love to be able to try the medication <a href="http://www.gwpharm.com/Clinical%20Use.aspx" target="_blank">Epidiolex</a> with Ethan. Epidiolex is a liquid formulation of pure plant-derived Cannabidiol (CBD), but since it has not yet been granted full FDA approval at this time is only available to a limited number of patients participating in clinical trials. So, we are going to be asking our Epileptologist his thoughts on the hemp oil extract known as <a href="http://cwbotanicals.com/hemp-oil-uses/cannabis-oil" target="_blank">Charlotte's Web</a>, which contains naturally high levels of non-psychoactive cannabinoids. </div>
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Please pray for us as Ethan continues to recovery from surgery and we seek to work with his medical team to try to find treatment options that reduce his seizures with minimal side effects. We really miss the little boy that Ethan was back in September and October. It has been a long fall, winter, and spring battling seizures and sleep apnea. We hope and pray that this summer will be different and that we could get our little boy back. </div>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com1tag:blogger.com,1999:blog-8854103311595149077.post-77876504302217284562016-05-19T18:27:00.000-05:002016-05-19T18:27:11.921-05:00GFPD is Family<div class="separator" style="clear: both; text-align: left;">
We may hate PBD-ZSD but we love our GFPD family. The Global Foundation for Peroxisomal Disorders has truly become our second family. Check out this short video to meet some of the other families who, like us, have had their lives forever changed because of PBD-ZSD. </div>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/RCX1azYhZxw/0.jpg" src="https://www.youtube.com/embed/RCX1azYhZxw?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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As of today, the GFPD only knows of 89 children in the U.S. who are living with PBD-ZSD. It is estimated that approximately 80 children are born with PBD-ZSD each year in the U.S. and approximately half of these children will not survive past their first birthday.<br /><br />We are passionate about raising awareness and funds for research because we pray that a breakthrough will be discovered in Ethan's lifetime, but even if that doesn't happen we will keep fighting because this cause is so much bigger than just our family. In the next couple of weeks we will be sharing details about how you can get involved in our bowling and silent auction fundraising event that will be in September. Even if you aren't able to attend there will be ways for you to help. More information coming soon.JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-18084758356649674922016-04-24T23:30:00.000-05:002016-04-25T10:17:17.593-05:00The Coexistence of Grief and HopeThis spring has been rough, especially when it comes to Ethan's seizures, but I'll be writing more about that in another post. On Friday I had the rare opportunity to spend several hours with another PBD-ZSD mom and I am so thankful for the time we had together, but my heart was also heavy because there are so many other women who I wish could have been with us. Tonight our family enjoyed the beautiful weather at a local park with friends from our small group. One particular conversation from Friday and the events of this evening have me reflecting on perpetual grief and the fact that not a day goes by that I am not mourning in one way or another.<br />
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I know that I'm not the only one who has these feelings. Numerous blogs and books have been written about the mourning and grief that accompanies having a child with special needs and/or medical complexities; "<a href="http://www.chicagoparent.com/magazines/special-parent/summer-2012/chronic-sorrow" target="_blank">How to Cope with Recurring Grief</a>," "<a href="http://themighty.com/2015/04/special-needs-parenting-and-grief-one-moms-perspective/" target="_blank">The Unique Grief of Special Needs Parents</a>," and "<a href="https://thefoughtfive.wordpress.com/2015/06/18/the-perpetual-state-of-losing/" target="_blank">The Perpetual State of Losing</a>," are just a few.<br />
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On Friday as I walked and talked and laughed and cried with another mom who "gets it," one of the things that we discussed was the use of the word "terminal" vs "life-limiting" when we talk about PBD-ZSD and how these words that in many ways mean the same thing, can carry very different connotations. Here are just a few possible definitions of these words that I found online.<br />
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<u>Terminal illness</u>: <br />
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<li>Leading ultimately to death; fatal; approaching or close to death; being in the final stages of a fatal disease; causing death eventually; leading finally to death; having an illness that cannot be cured and that will soon lead to death [Merriam Webster] </li>
<li>An incurable and irreversible condition caused by injury, disease, or illness that would cause death within a reasonable period of time in accordance with accepted medical standards, and where the application of life-sustaining treatment would serve only to prolong the process of dying. [Duhaime's Law Dictionary]</li>
<li>Defined in UK Social Security legislation as: "a progressive disease where death as a consequence of that disease can reasonably be expected within 6 months." [The Free Dictionary]</li>
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<u>Life- Limiting Condition</u>:<br />
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<li>Conditions for which there is currently no cure and the condition is likely to lead to a child dying prematurely; Any chronic condition (longer than three months) developed in childhood that without major intervention is likely to result in premature death; Recognition and diagnosis of the condition must occur before the age of 16 years. There is no cure for the condition and a likelihood that the child will die prematurely as a young person (25 years or under). [Centre for Palliative Care Research & Education - Children with a Life Limiting Illness]</li>
<li>Diseases with no reasonable hope of cure that will ultimately be fatal. [Rising National Prevalence of Life-Limiting Conditions in Children in England]</li>
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My friend's son is 2 years old. Ethan is 5 years old. My friend frequently uses the term "terminal" when explaining her son's illness to others. While I still use "terminal" at times, more recently, I more frequently describe Ethan's illness as "life limiting with no cure." Why have I changed how I describe Ethan's condition? To be honest, I think it has a lot to do with grief and mourning. Both mine and the general understanding of if within today's society. When most people hear the word terminal they think that there must be an "expiration date" or a given life expectancy. We have been in mourning since we first learned about PBD-ZSD on August 20, 2010 when we held our beautiful 28 day old baby boy and the world collapsed around us. We were told the truth about the disease (50% chance of dying in the first year, etc.) and began to prepare for the worst but hope for the best. Fast forward more than 5 years later, Ethan is still alive. He is severely disabled and although we don't think he is likely to die tomorrow, he still hasn't "beat" PBD-ZSD. He still has a "terminal" disease and his health could deteriorate at any given time without much warning or he could continue to trudge along day by day fighting PBD-ZSD with all his might yet not making a lot of progress. The honest truth is that God is the only one who knows my son's future and while we have looked, we have yet to discover an expiration date stamped anywhere on his little body. <br />
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While there is some variation in the definitions of "terminal" and "life-limiting," depending on the source, the overlap is undeniable. Let me be clear --- PBD-ZSD is a terminal life-limiting condition with no known cure. However, PBD-ZSD is a disease that has an extremely wide range of symptoms, so wide in fact that prior to recent medical advancements/discoveries the spectrum was actually thought to be four separate diseases (ZS, NALD, IRD, Heimler Syndrome). The sad reality is that approximately half of all children born with PBD-ZSD have the most severe presentation of the disease and typically die before their first birthday and the majority of children with PBD-ZSD do not survive into their teens. Although there are individuals with PBD-ZSD living into their twenties and thirties with varying degrees of disability, this is not the norm. This is a nasty disease and while there are amazing physicians and scientists working on discovering ways to improve the quality of life for individuals with PBD-ZSD, there is still a lot that is unknown. [For more information about PBD-ZSD please visit the <a href="http://www.thegfpd.org/" target="_blank">Global Foundation for Peroxisomal Disorders</a> (GFPD).]</div>
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Tonight, we met our friends at the park. All of our friends also have children. While a few of the children are older than Ethan, the majority of them are significantly younger than Ethan, but because they are "healthy typically developing" children they live, play, operate in a completely different world and reality than Ethan. I'll just be honest --- it is hard. Silent tears were shed, multiple times, as I watched my friends' children play and the sorrow over what PBD-ZSD has stolen from Ethan and us as a family simply overwhelmed me. I'm not mad that my friends' have healthy kids or that they can run around and play. I grief and mourn because Ethan can't. I grief and mourn everyday for all that Ethan and us as parents are missing out on because of this horrible disease that I hate beyond words. On most days the perpetual grief doesn't bring me to tears, but there are many moments that still, more than 5 years into this, hit me hard. Tonight at the park, was one of those times. </div>
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Then, we came home and after Ethan was fed and in bed I sat down at the computer to order new shoes for Ethan, since his new AFOs (braces) won't fit in his current shoes, as well as some of his medications. While I was sitting here my mind couldn't stop thinking about another dear friend who will likely struggle to sleep tonight, as tomorrow morning marks one year since her little girl left her and her husband's arms for the arms of Jesus. The grief that we feel and experience isn't the same as what my friend knows, yet without a miracle, it is almost certain that one day we will know that type of grief all too well. The knowing and the not knowing that comes with this type of diagnosis, at least for me, is another contributing factor in the perpetual grief that is my reality. Another thing that makes the grief associated with our journey with PBD-ZSD, thus far, unlike a grief that I had ever experienced before is that we are active members in a community that mourns together. The GFPD has truly become a second family to us and when they hurt, we hurt. Even after over 5 years, each new loss within our GFPD family stings and reminds us how desperately we need effective treatments and ultimately a cure for this terrible disease. While I may feel more pain because I am part of the GFPD, I can't imagine doing this without them. I am so thankful to know and call these people not only my friends but also my family. I'd like to ask you to please pray for my dear friends and for all families who have experienced the death of a child. </div>
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While PBD-ZSD has thrown me into a world of perpetual grief, because of my faith in Christ and what He did, I can still have hope and I can still find joy, because I know that this present life isn't the end. </div>
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"Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's world, we tell you that we who are still alive, who are left until the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage one another with these words. ~ 1 Thessalonians 4:13-18 (ESV)</div>
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I don't pretend to know the answers to all the questions that I have, especially those dealing with why pain and suffering are allowed to occur and seem to be so abundant in this world and what Heaven will really be like. I freely admit there is so much that I don't understand. Yet, I haven't given up my faith in the one who loved me so much that he would die for me. </div>
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"But God shows his love for us in that while we were still sinners, Christ died for us."</div>
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~ Romans 5:8 (ESV)</div>
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"For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life." </div>
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~ John 3:16 (ESV)</div>
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"Now faith is the assurance of things hoped for, the conviction of things not seen."</div>
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~ Hebrews 11:1 (ESV)</div>
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Shortly after Ethan's diagnosis a friend sent me "Holding onto Hope" and "The One Year Book of Hope," written by <a href="http://www.nancyguthrie.com/grief-loss/" target="_blank">Nancy Guthrie</a>. Nancy and her husband had two children die from PBD-ZSD. More recently I began to explore books like "<a href="http://www.sandrapeoples.com/held/" target="_blank">Held: Learning to Live in God's Grip</a>" and "<a href="http://lauriewallin.com/wordpress/your-weirdness-wonderful-strengths-book/" target="_blank">Get Your Joy Back</a>" alongside other Christian women who have children with special needs. The next book we are going to be reading, beginning in June, is "<a href="http://amysimpsononline.com/books/" target="_blank">Anxious: Choosing Faith in a World of Worry.</a>"</div>
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I also listen to a lot of Christian music. I find myself singing along with songs like "<a href="https://youtu.be/he32vwlKQPY" target="_blank">Where I Belong</a>," by Building 429, "<a href="https://youtu.be/snBap2F7mXs" target="_blank">Bigger Than the Odds</a>," by Matt Vollmar, "<a href="https://youtu.be/KBy2D8p5Kpw" target="_blank">Lift Me Up</a>" by The Afters, "<a href="https://youtu.be/New8i_eX3x8" target="_blank">Before the Morning</a>," by Josh Wilson and so many others, frequently with tears streaming down my face, as I reflect on how fleeting this life is and that eternity awaits us. </div>
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Tonight I came across "<a href="http://specialneedsparenting.net/wp-content/uploads/2015/08/30-Prayers-for-Special-Needs-Parents.pdf" target="_blank">30 Prayers for Special-Needs Parents</a>," and my plan is to print them out this week so that I can focus on the scriptures and prayers in this resource over the next month.<br />
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I also draw strength from "reminders" like these from Proverbs 31 Ministries:</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtgMXZuact8V8Am8zGO-TexNVWrhWE1DqtoA7lOIKkYeSlOniR5MxKhedioAtXrf9Kyd31u9gpPfr_OaqDwvbpGLz2wpFBLiO4JJHqlLdGTTmgHg28CpDGTfHWdIHduzQSJV3lFY8LrWI/s1600/13040985_10153550258521961_3883662707907373500_o.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtgMXZuact8V8Am8zGO-TexNVWrhWE1DqtoA7lOIKkYeSlOniR5MxKhedioAtXrf9Kyd31u9gpPfr_OaqDwvbpGLz2wpFBLiO4JJHqlLdGTTmgHg28CpDGTfHWdIHduzQSJV3lFY8LrWI/s320/13040985_10153550258521961_3883662707907373500_o.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I want to live a life that reflects this. I hope you do too. </td></tr>
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<u>Prayer Request</u></div>
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Please pray for all who are hurting and need to feel and experience the love, comfort, strength, peace, hope, and joy that only God can provide. Please pray for guidance about how God might use you, as the "hands and feet of Jesus" to minister to those around you who are hurting. </div>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-11380729442875942162016-03-03T23:30:00.000-06:002016-03-04T00:07:47.036-06:00Epileptologist Visit - February 29, 2016Monday was Rare Disease Day. We celebrated Rare Disease Day with our first visit to a pediatric epileptologist (epilepsy specialist) at the University of Iowa, Dr. Ciliberto. <br />
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Jeff and I liked the doctor and his team. He spent a lot of time with us and although he didn't have a magic solution, we were glad that we at least have a plan. Ethan is currently taking Keppra, Phenobarbital, and Topamax for his seizures and we have rectal <a href="http://www.epilepsy.com/medications/diazepam" target="_blank">Diazepam</a> that we use as a rescue medication when needed. February was a difficult month and we have needed to use the Diazepam on multiple occasions. Due to a cancellation, Ethan was able to have his sleep study last week, which confirmed that he has mild sleep apnea, which could be contributing to the increase of seizures, especially while he is sleeping. While we don't enjoy the risks associated with surgery, we are working towards being able to schedule the removal of Ethan's tonsils and adenoids. The hope is that their removal may decrease the level of sleep apnea. Unfortunately, we will not be able to get in to see the ENT/surgeon until the end of April. Dr. Ciliberto is not a sleep specialist, but he agrees that addressing the sleep apnea may be beneficial, although he has warned us that that alone may not control the seizures. So, we are realistic, but also hopeful that we will see some improvement after the surgery. I asked for us to be put on the cancellation list, so hopefully we can get in to see the ENT, sooner than later, and get the surgery scheduled.<br />
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In the meantime, Dr. Ciliberto is going to tweak Ethan's medications. Over the next couple of weeks we are going to increase Ethan's dose of <a href="http://www.epilepsy.com/medications/topiramate" target="_blank">Topamax</a> to see if that will help control the seizures. If it doesn't help, then we will take him off of that particular medication and try something else in addition to the <a href="http://www.epilepsy.com/medications/levetiracetam" target="_blank">Keppra</a> and <a href="http://www.epilepsy.com/medications/phenobarbital" target="_blank">Phenobarbital</a>. The medications that we discussed as possibilities of what to try next were: <a href="http://www.epilepsy.com/medications/ezogabine" target="_blank">Ezogabine</a>, <a href="http://www.epilepsy.com/medications/perampanel" target="_blank">Perampanel</a>, <a href="http://www.epilepsy.com/medications/lamotrigine" target="_blank">Lamictal</a>, and <a href="http://www.epilepsy.com/medications/rufinamide" target="_blank">Rufinamide</a>. The implantation of a <a href="http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns" target="_blank">Vagus Nerve Stimulation (VNS) device</a> was also discussed as a possibility if the seizures remained uncontrollable after trying additional medication combinations and the removal of Ethan's tonsils and adenoids. We also discussed at length how often we have had to use the rectal Diazepam, its effectiveness, and risks associated with frequent use. For at home, at least, we are adjusting our plan for using the Diazepam to break the seizures. If Ethan is having a cluster of seizures, where each seizure is less than 30 seconds, with a short break and then another separate seizure starts, we are now going to wait longer to use the Diazepam as long as he doesn't seem to be in distress. If there is one constant seizure that lasts for 5 minutes, then we will give the Diazepam to break it, however, if it is a cluster we are to watch him closely for up to 20 minutes before administering the rescue medication as long as we do not feel like he is having problems breathing, etc. Dr. Ciliberto has recommended this because it is his experience that some individuals with cluster seizures have a normal length of cluster --- 5 minutes, 10, 15, even 30 minutes, and their body stops on its own. Currently, we had been using the Diazepam at 5 minutes and then it would take about 5 to 7 minutes for the seizures to stop after the medication was administered, and then Ethan would fall asleep for an hour or more and is completely drained even upon waking.<br /><br />Today, was the first day that I had to follow this new protocol. Ethan has had a cough and some boogies so he did not go to school yesterday or today and has been pretty tired for the last two days. Today he woke up from a late morning nap seizing. So, I timed it and took care of him --- holding him, laying next to him, stroking his back and his head, talking to him, praying, etc. for almost 15 minutes until the cluster of seizures stopped on their own. It was hard to wait that long without intervening, but I did. After the cluster stopped it took a little while but Ethan seemed to recovery pretty well and was back to playing within an hour. He's not his 100% right now due to whatever cold/cough/bug he is fighting, but overall he was doing much better, energy level speaking, than if I would have administered the Diazepam. <br />
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<u>Prayer Requests</u><br />
<ul>
<li>Decrease of seizures -- finding the right medication combination, addressing the sleep apnea, etc.</li>
<li>Surgical removal of tonsils and adenoids, if/when scheduled -- wisdom for the doctors and a safe surgery and quick recovery for Ethan, and that is would eliminate the sleep apnea.</li>
<li>Strength, wisdom, peace for Jeff and I as we are going to try to wait longer to administer the rescue medication, when it is safe to do so. </li>
<li>Discovery/development of effective treatment options and ultimately a cure for PBD-ZSD. A miracle.</li>
<li>The <a href="http://www.thegfpd.org/" target="_blank">Global Foundation for Peroxisomal Disorders</a></li>
<li>All of the amazing professionals who are part of Ethan's team -- doctors, therapists, teachers, his "buddies" at church who care for him so that we can attend Sunday School and the Worship service, etc.</li>
<li>Jeff - would continue to do well at work and that he would be able to have peace about being at work and doing his job in the midst of Ethan's increased health challenges. That he would be able to get the sleep/rest he needs each night so that he would be refreshed and not so tired all the time.</li>
<li>Pamela - be able to do a better job keeping up with the house, since I quickly dismiss this when Ethan isn't feeling well and he is home sick and not at school. Make wiser and healthier food choices and be motivated to exercise on a regular basis once again. Over the last year I have become increasingly unhealthy and have lost nearly all the progress that I had worked so hard at for over two years (2013-2014). </li>
<li>Jeff & Pamela - our personal relationships with Christ, each other, Ethan, our families, fellow believers, and friends. All of the uncertainties surrounding Ethan's health and life are extremely stressful and impact every aspect of our lives. </li>
<li>Salvation of friends and family who do not know the Lord. </li>
</ul>
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-54926582387572487832016-02-21T23:42:00.001-06:002016-02-21T23:42:03.762-06:00Whirlwind Week and a HalfThe last week and a half have been stressful for us, filled with seizures, sickness, and doctor appointments.<br />
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<b>Wednesday, February 10th</b> -- Ethan woke up crying and seizing. Jeff had not yet left for work so he helped me administer Ethan's rescue medication when the seizure clusters continued for more than five minutes. The diazepam worked, but it took about 8 minutes for the seizures to stop and for Ethan to fall asleep (a side effect of the medication). After we were sure that Ethan was safe Jeff went ahead and went to work. Ethan slept for a little bit and then was up and about playing, but was still pretty tired and not seeming to be 100% back to his normal. I called the pediatrician, to let her know that we had to use the diazepam and to see if we could bring Ethan in to make sure nothing else was going on. There weren't any appointments available for that day with our pediatrician, and while we could have seen another doctor in the practice, I decided it would be better to just wait until Thursday and see our pediatrician, who knows Ethan. For the remainder of the day Ethan was pretty snugly, which let me know he wasn't feeling great. I even participated in part of the GFPD Board of Directors phone call meeting while he slept on me. He didn't have a fever or any other symptoms that indicated anything else was going on, so I just contributed his tiredness to the bad seizure cluster.</div>
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<b>Thursday, February 11th</b> -- Ethan seemed fine when he woke up so I took him to school and then picked him up at 1:00pm so that I could take him to the pediatrician. His teacher said he had had a good morning, so I was sure that he was okay, but I knew it was still important to follow up with the pediatrician since we had given him the diazepam the day before. Unfortunately, my mom instincts were wrong. Ethan tested positive for strep throat! I felt horrible. He hadn't had any visible/noticeable symptoms and since he isn't able to tell me much, I had no idea. Major mom fail! So, the pediatrician prescribed five days of antibiotics and since Ethan had Monday off for President's Day, we were sure he'd be good to go back to school on Tuesday. Ethan loves school, a lot more than being home, so we try to not have him miss unless it is really necessary. </div>
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<b>Friday, February 12th</b> [Day 2 of antibiotics] -- Ethan stayed home from school. He seemed pretty tired but otherwise okay. Diarrhea, likely due to the antibiotics started.</div>
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<b>Saturday, February 13th</b> [Day 3 of antibiotics] -- Haircut!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8d3KSxuFyS-qN7UaoOnKT8oDT_fHv9RBQEsMVaKPmJd_AdYKWEEsTdGYsAP8tZ7_iRJlAKGYvKMA_G18U9WgUexZ36cjsQPjcCQNqO_py2OQdB7j2nFYYS6AdAcYoDAZXDXiI9TcqhMI/s1600/12711177_10156511977910293_3339091468900173877_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8d3KSxuFyS-qN7UaoOnKT8oDT_fHv9RBQEsMVaKPmJd_AdYKWEEsTdGYsAP8tZ7_iRJlAKGYvKMA_G18U9WgUexZ36cjsQPjcCQNqO_py2OQdB7j2nFYYS6AdAcYoDAZXDXiI9TcqhMI/s320/12711177_10156511977910293_3339091468900173877_o.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">During</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaQlD_yRRxWOkdi0RwCPR4pBuDlp_g-tQRKarYPEBMpiNQvhkpZL6GgAM031fQpyCnhb6oIY_lERbcObNKn04kNAFEZN_h9-TxGDNXfKqUBQ_ahxP61tcAWP-_CThny5E7FWiuZFoHz7Q/s1600/12710930_10156511977915293_8150124168716207198_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaQlD_yRRxWOkdi0RwCPR4pBuDlp_g-tQRKarYPEBMpiNQvhkpZL6GgAM031fQpyCnhb6oIY_lERbcObNKn04kNAFEZN_h9-TxGDNXfKqUBQ_ahxP61tcAWP-_CThny5E7FWiuZFoHz7Q/s320/12710930_10156511977915293_8150124168716207198_o.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After</td></tr>
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The morning, went well, especially his haircut, but sadly he continued to have diarrhea. </div>
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<b>Sunday, February 14th</b> [Day 4 of antibiotics] -- Due to the diarrhea we decided that it was better to stay home from church. Later in the afternoon it was clear that Ethan wasn't feeling great. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg631ciw7dnjtugu7uQPWUWzOv2ulfSNy7rFacNP1KEEP_f2p2AU1ryS9DhkpMClIQVnikY5NgepyDj2HFolTT8xn3S6oVimbR2PUxd34vJgt0JaNcD148NBj5P3vmMEFSgjLp1QS51Fcg/s1600/12710735_10156516087850293_433272010106355928_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg631ciw7dnjtugu7uQPWUWzOv2ulfSNy7rFacNP1KEEP_f2p2AU1ryS9DhkpMClIQVnikY5NgepyDj2HFolTT8xn3S6oVimbR2PUxd34vJgt0JaNcD148NBj5P3vmMEFSgjLp1QS51Fcg/s320/12710735_10156516087850293_433272010106355928_o.jpg" width="320" /></a></div>
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<b>Monday, February 15th</b> [Day 5 of antibiotics] -- There was no school because it was President's Day, which is why I had previously scheduled his six month GI appointment for that day. When we saw the GI in the afternoon I spoke with him about the diarrhea, which he also believed was likely due to the antibiotics, and the random choking/retching sounds that Ethan makes sometimes. He prescribed a medication that we hope might lessen the retching. The doctor is also going to see if our insurance will cover a medication that some children with PBD-ZSD take that has shown to improve their liver function.<br />
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<b>Tuesday, February 16th</b> -- Ethan was still having diarrhea so we kept him home from school. He had two small seizures during his nap -- each time they woke him and then he was able to go back to sleep.</div>
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<b>Wednesday, February 17th</b> -- Due to diarrhea overnight Ethan required a bath when he woke up. Jeff took the day off to go with us to previously scheduled ENT, Neurology and Genetics appointments in Champaign. We saw the ENT first and discussed the possibility of Ethan having sleep apnea that could be making his seizures worse. Ethan's tonsils did not appear to be extremely large, and so the ENT wants to wait until we get results from the sleep study (still more than a month away) before we would consider surgery, but agrees that if there is sleep apnea that removing the tonsils and adenoids might be beneficial. Before we left the ENT's office for lunch we decided to give Ethan his tube feeding, and unfortunately Ethan had another bout of diarrhea that needed to be cleaned up and required a change of clothes. </div>
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We left the hospital and headed to Jimmy Johns for lunch, where we went through the drive thru and then drove to the park to sit and eat in the car. While Jeff and I were eating our lunch Ethan played for a while with his iPad, and then napped a little, and unfortunately had another diarrhea diaper. We got him cleaned up and I called our pediatrician's office to let them know that Ethan was still having diarrhea even though he'd been off of the antibiotics for two days. I left a message with our nurse care coordinator and then we headed back to the hospital for our next appointments.</div>
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We spent about an hour with the geneticist. It was our yearly check in. We went over some of Ethan's latest blood test results, but unfortunately his VLCFA tests were not back yet. We spoke of what we had learned at the GFPD conference back in July and the geneticist was in agreement that we are doing what we need to do for Ethan. Ethan was not happy at being there and he didn't want any of his toys, but luckily the nurses found a light up top that he liked. </div>
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After we finished with the geneticist we went back to the waiting room to wait for our neurology appointment. I checked my phone and saw that I had missed a call from the pediatrician's office so I called back and they were able to schedule us to be seen by in the pediatrics after hours clinic at 7:30pm. Ethan just wanted to leave, so Jeff and Ethan wondered around for a bit before it was time for us to see the neurologist.</div>
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We filled the neurologist in with all that had happened since we had seen her in November. It is very difficult to get in to see her and all of our hospitalizations and recent EEGs have been here, almost 2 hours away from her. Although we have tried to keep her updated and the local doctors have reached out to her a few times while we were inpatient, there has been problems with keeping everyone in the loop and on the same page with medications and dosing, as each time we see a different doctor inpatient they suggest something different. Our goal is to have a local neurologist, because it would be nice to have a neurologist who is affiliated with the hospital where Ethan receives the majority of his care.<br />
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Ethan is currently on three anti-seizure medications (Keppra, Topamax, and Phenobarbital). The first anti-seizure medication he tried more than three years ago was Depakote, and this fall we tried Onfi, but that didn't seem to be helpful in controlling the seizures and really impacted his balance and mobility negatively. Our neurologist admitted that Ethan's seizures have reached a severity that she typically doesn't see and that it is time to see a pediatric epileptologist (epilepsy specialist). We asked to be referred to someone in Iowa City, if possible, since Ethan already has his eye doctors there and if we are going to have to drive Iowa City is just as close as St. Louis or Chicago and is a much easier drive. Dr. K. found out that Iowa City does indeed have a pediatric epileptologist, who went to medical school at Washington University and completed his residency there as well, so she felt comfortable in reaching out to him and making a referral. We left the appointment knowing that a referral would be made and that hopefully we would get to have Ethan seen by a pediatric epileptologist soon and that we'd see Dr. K again in May.<br />
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It was just after 5pm when we left and headed back home for our 7:30pm pediatric after hours appointment to address the continued diarrhea. Since it was almost 7:00pm when we arrived back in town we went through the drive thru for dinner, filled the van with gas, and then headed to the appointment.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIGJrSTz7Yoa_7ESqmuG7bsmWCi280L9IjgMql2eHziQuB7MeV2BRse0Na3G_ojYC7Elp-yLwyQHaT2mWfAsflCB5UJnnS94n1XRh6UsrM3Z6Ken27QyhBPZjNaIKpiohc0j0yEAuWjuE/s1600/0217161918c.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIGJrSTz7Yoa_7ESqmuG7bsmWCi280L9IjgMql2eHziQuB7MeV2BRse0Na3G_ojYC7Elp-yLwyQHaT2mWfAsflCB5UJnnS94n1XRh6UsrM3Z6Ken27QyhBPZjNaIKpiohc0j0yEAuWjuE/s320/0217161918c.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting to see the doctor at pediatric after hours.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Poor guy!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6bhAg9VOX0DZtZvnIJlZbBbIqQrN6AMq6bJtQVF8DGJ-p5xDrrIAjwiugx8p9lLWlAJMVYCpiR1YfuolyScznSHHlieoIX_OSAluwgKrhyphenhyphen8WiIloBOvWcOgXzm_P-7EzhUel6SZwHY_k/s1600/0217161934a.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6bhAg9VOX0DZtZvnIJlZbBbIqQrN6AMq6bJtQVF8DGJ-p5xDrrIAjwiugx8p9lLWlAJMVYCpiR1YfuolyScznSHHlieoIX_OSAluwgKrhyphenhyphen8WiIloBOvWcOgXzm_P-7EzhUel6SZwHY_k/s320/0217161934a.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Can we go home yet?</td></tr>
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The pediatrician checked Ethan out and sent us home with a "poop kit" so that we could collect a stool sample to have tested for C-Diff. If Ethan tested positive for C-Diff it would be important to address it with the proper antibiotics ASAP, but he hoped that the lingering diarrhea was simply because the antibiotic he had taken for strep throat was still working itself out of Ethan's system. After a very long day we finally got home around 8:30pm, nearly 12 hours after we left.<br />
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<b>Thursday, February 18th</b> -- We kept Ethan home and by mid-morning I had collected the required sample, which Ethan and I then took to the lab for testing. Afterwards we took a detour to Target because we needed several household items but this mom was also in search of discounted Valentine's Day candy. I had hoped to be able to attend a school district meeting in the evening, but Jeff had to work late, so we simply spent a calm evening at home.<br />
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<b>Friday, February 19th</b> -- Around 3:00am Ethan woke up crying and seizing. He was inconsolable and the seizures seemed "smaller" but they continued to cluster, with one ending and then him almost immediately going into another one so we had to once again administer rectal Diazepam. After the medication calmed him down and he fell asleep we carried him back to bed where I curled up beside him where I watched him and prayed until I fell asleep too. </div>
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Ethan was pretty sad and tired most of the day and took a very long nap in the afternoon. We found out that thankfully the stool sample was negative for CDiff. We also heard from the neurology department at the University of Iowa and were able to get an appointment scheduled to see the specialist this month! This is sooner than we ever imagined possible, which is a huge praise, because we really want to know we are doing everything we can to try to help get the seizures under control. I hate seizures!<br />
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<b>Saturday, February 20th</b> -- We didn't have anything planned for the day, which was good because I woke up with an enormous headache so I was very thankful that Jeff and Ethan were able to play while I rested for a couple of hours. After lunch Ethan took a very long nap and Jeff headed to the grocery store to get a few essentials for us since I hadn't been to the grocery store all week. Ethan didn't have any seizures that we know of but it was pretty clear that something was still off.<br />
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<b>Sunday, February 21st</b> -- This morning we did go to church but I ended up bringing Ethan home after Sunday School. He just wasn't acting like his normal self and although he hasn't had a fever or anything I just thought it would be best to go home. Before I left a friend prayed with and for us, which was nice and much needed. Jeff stayed for the worship service and said that it was good. The audio isn't uploaded yet, but you can find the outline <a href="http://bethanycentral.org/resources/grace-abounding/" target="_blank">here</a>.<br />
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Ethan was pretty calm during the afternoon, not as active as he usually is, so perhaps he is still a bit wiped out from the seizure episode on Friday. Although we were a little late we did make it to our small group tonight. Honestly, it would be easier to just stay home, but we never regret going when we do. We continue to be thankful for these brothers and sisters in Christ who God has put into our lives since we moved here. Ethan was pretty restless but several of our friends took turns watching and playing with Ethan so that helped.<br />
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The Bible passage that we read and discussed tonight was Ephesians 3:1-13. You can find the passage in the English Standard Version (ESV) translation <a href="https://www.biblegateway.com/passage/?search=Ephesians%203&version=ESV" target="_blank">here</a>, but below is the passage in <a href="https://www.biblegateway.com/versions/Message-MSG-Bible/" target="_blank">The Message</a> paraphrase, which uses contemporary language to engage people in reading and understanding the Bible. <br />
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1-3 This is why I, Paul, am in jail for Christ, having taken up the cause of you outsiders, so-called. I take it that you're familiar with the part I was given in God's plan for including everybody. I got the inside story on this from God himself, as I just wrote you in brief.<br />
4-6 As you read over what I have written to you, you'll be able to see for yourselves into the mystery of Christ. None of our ancestors understood this. Only in our time has it been made clear by God's Spirit through his holy apostles and prophets of this new order. The mystery is that people who have never heard of God and those who have heard of him all their lives (what I've been calling outsiders and insiders) stand on the same ground before God. they get the same offer, same help, same promises in Christ Jesus. The Message is accessible and welcoming to everyone, across the board.<br />
7-8 This is my life work: helping people understand and respond to this Message. It came as a sheer gift to me, a real surprise, God handling all the details. When it came to presenting the Message to people who had no background in God's way, I was the least qualified of any of the available Christians. God saw to it that I was equipped, but you can be sure that it had nothing to do with my natural abilities.<br />
8-10 And so here I am, preaching and writing about things that are way over my head, the inexhaustible riches and generosity of Christ. My task is to bring out in the open and make plain what God, who created all this in the first place, has been doing in secret and behind the scenes all along. Through followers of Jesus like yourselves gathered in churches, this extraordinary plan of God is becoming known and talked about even among the angels!<br />
11-13 All this is proceeding along lines planned all along by God and then executed in Christ Jesus. When we trust in him, we're free to say whatever needs to be said, bold to go wherever we need to go. So don't let my present trouble on your behalf get you down. Be proud!<br />
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Although we were the first to leave, and I'm sure that the discussion continued afterwards, the time that we did have pondering the meaning and the application of this passage in our daily lives as 21st century Christians was thought provoking. Knowing about God's love and the offering of the gift of forgiveness and reconciliation by grace through faith to all people is something that many of us who grew up in the church probably take for granted. However, as we tried to step back and think of what the people during the time of Christ's earthly ministry and in the years immediately following his death, burial, and resurrection, the thought that Jews and Gentiles alike would "fellow heirs" and "members of the same body" must have truly be hard to grasp. The truth found in John 3:16, "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life." (ESV) must have seemed like such a radical and perhaps unbelievable idea/concept.<br />
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Perhaps that is your reaction to the Gospel. If so, then I'd like to challenge you to learn more about the how and why of the Gospel. Not sure where to begin? <a href="https://viewthestory.com/watch/en" target="_blank">The Stor</a>y is a short video that will help you understand God's story and how it all began and it will never end. I'd also like to recommend you read <a href="http://bethanycentral.org/about/jesus/" target="_blank">It's All About Jesus!</a> and <a href="http://www.sbc.net/knowjesus/theplan.asp" target="_blank">How to Become a Christian</a>. If you do not consider Jesus Christ your Lord and Savior, my prayer is that today your heart and mind would be open to his gift of grace through faith and that you would be forever changed.<br />
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<u>Prayer Requests</u><br />
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<li>Upcoming appointment with the pediatric epilepsy specialist. Pray that the right medication and/or combination of medications would be found that would help us control Ethan's seizures.</li>
<li>Sleep study near the end of March to determine whether or not Ethan has sleep apnea. Pray for the test itself, which will likely be very traumatic for Ethan and also for wisdom about the possibility of surgery to remove Ethan's tonsils and adenoids if sleep apnea is diagnosed. </li>
<li>Ethan's overall health and energy level. PBD-ZSD is a metabolic disease, so his little body is always working really hard and even normal childhood illnesses, such as strep throat, a cold, or the flu can really wreck havoc on him (and us). </li>
<li>Upcoming GFPD fundraisers: <a href="http://poundthepavementforpeter.com/" target="_blank">Pound the Pavement for Pete</a>r on March 19th in the Atlanta, GA area; <a href="http://www.teeitup4gfpd.com/" target="_blank">Tee It Up! For the GFPD</a> on May 19th in Bloomington-Normal, IL; and the <a href="http://www.ilanathon.org/" target="_blank">Ilan-a-thon</a> on June 4th in the Baltimore, MD area. </li>
<li>Potential GFPD fundraisers organized by our family: Our family hosted a couple of successful Pancakes for PBDs all you can eat pancakes and sausage breakfasts before we moved, and we would really like to see if it is possible to revive that as an annual event since we still have friends and family in the Decatur, IL area. We would also like to work on getting an annual Pasta for PBD all you can eat spaghetti dinner organized and started where we live now. Friends --- for these to be successful we will need help! </li>
<li>Wisdom, guidance, and favor for all the doctors, researchers, scientists around the world who are treating children with PBD-ZSD and/or working in labs to better understand and hopefully discover potential treatment options. Would you consider even praying specifically by name for the men and women who serve on the <a href="http://www.thegfpd.org/#!scientific-advisory-board/c1l1x" target="_blank">GFPD Scientific Advisory Board</a>? </li>
<li>The GFPD's <a href="http://www.thegfpd.org/#!board-of-directors/c1rvq" target="_blank">leadership</a> team and all the families impacted by PBD-ZSD. </li>
<li>Ethan's team -- the doctors, teachers, assistants, therapists, etc. who work with him and want to see him reach his fullest potential.</li>
<li>Encouragement, strength, wisdom, patience, contentment, joy and peace for Jeff and I as we fight through the daily routines, the uncertainties, and the grief associated with this disease and its impact on Ethan and us as individuals, a couple, and as a family. </li>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-74358012613125621582016-02-07T20:39:00.000-06:002016-02-07T20:52:15.150-06:00Physical Therapy - February 4, 2016PBD-ZSD affects every child differently. In the first year of Ethan's life, when he was meeting a few of his gross milestones not all that far behind schedule we hoped and prayed that Ethan would end up developing the skills and abilities that would put him on the milder end of the spectrum of the disease. However, as he continued to fall further and further behind, develop additional health challenges, and faced multiple setbacks it became clear that Ethan's symptoms (or ability level) place him somewhere closer to the middle of the spectrum of severity for PBD-ZSD.<br />
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Ethan will be 6 in July and while we are thrilled to say that Ethan can walk short distances independently, his balance and endurance continue to be a major issue. Since the return of the seizures late this past Fall, we have been fighting hard to keep the mobility that he has fought so hard to achieve. </div>
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One of the things that Ethan has been working on for months, both at school and at outpatient PT is riding an adaptive bike (tricycle). In the last few weeks Ethan has seemed to really be catching on to the process and he seems to enjoy going fast!<br />
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Click on the links below to see Ethan in action!<br />
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<a href="https://www.facebook.com/pamela.c.marshall.90/videos/10156493257615293/?l=4250780876899442432" target="_blank">Physical Therapy - Video (Part 1)</a></div>
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<a href="https://www.facebook.com/pamela.c.marshall.90/videos/10156493262945293/?l=1571241864666032189" target="_blank">Physical Therapy - Video (Part 2) </a></div>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com1tag:blogger.com,1999:blog-8854103311595149077.post-44831562902171711742016-02-02T23:38:00.001-06:002016-02-02T23:52:48.183-06:00January 2016 Wrap Up The end of January and the beginning of February have been marked by time with family, several doctor appointments and unfortunately more seizures.<br />
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<u>January 18th </u></div>
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It was Martin Luther King Jr. Day so Ethan didn't have school and Jeff had the day off from work. We spent the day as a family, and in the evening Ethan had a seizure that woke him from his sleep before we had transferred him to his bed. </div>
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<u>January 20th</u></div>
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We took Ethan to the dentist for his regularly scheduled cleaning. Ethan won't let us in his mouth to brush, so we have his teeth cleaned every 3 months instead of every six. As you might imagine, Ethan does not enjoy having his teeth cleaned. Jeff goes with us and sits in the chair with Ethan and I help hold him down/still while the dental hygienists work on our little guy. Thankfully, they are very good with him and let us dictate when Ethan needs a break. Ethan's dentist has shared with us that she has a brother (who is in his 30s now) with special needs. Ethan attends the same school that her brother did. Ethan's school is a regular neighborhood elementary school (although it is not our neighborhood school it is less than a 10 minute drive from our home) that houses the severe and profound special education students in a section of the building.</div>
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<u>January 21st</u></div>
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Ethan and I went to Springfield, which is just short of a two hour drive, to see his endocrinologist. The appointment went well. This was the first visit in which Ethan stood against the wall to be measured! He needed a bit of help, because although he does walk a little bit, he doesn't actually stand still independently for more than a few seconds. Ethan hasn't grown a lot of the last year and is only about an inch taller, but overall the endocrinologist isn't too considered. I know that he has been growing because most of his 3T shirts and even some of his 4T shirts are too short in the sleeves. </div>
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<u>January 23rd </u></div>
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Jeff's parents, sister, brother and his wife and their two children, and grandpa all came to our house to celebrate Jeff's dad's birthday. We were very thankful that everyone came to us, since we are hesitant about traveling too far from home these days due to Ethan's seizures.</div>
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<u>January 26th</u></div>
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We had our six month home visit from our foster care agency. Although we have not yet had a child placed with us, routine visits occur every six months. We have been licensed a year and we continue to pray for patience and wisdom as we trust the Lord in the building of our family.</div>
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<u>January 27th</u></div>
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I kept Ethan home. It was a half-day at school. He was super tired and just didn't really want to wake up. Ethan has been staying up later and then sleeping in. Although we aim for him to be asleep by 8:30 there is not really anything that we can do to make him go to sleep, and with his seizures seeming to be worse when he is falling asleep, waking up, and/or tired, we are just very cautious.</div>
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<u>January 28th</u></div>
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I picked Ethan up early for his physical therapy appointment at Easter Seals. He did great! He really worked hard on the tricycle. </div>
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<u>January 30th</u></div>
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Ethan had a bad seizure day, they clustered in the afternoon and we had to administer his rescue medication. Even after we gave him the medication it took several minutes before the seizures stopped and Ethan fell asleep. He slept for about 2 hours and woke up like nothing had happened. We hate seizures!</div>
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<u>January 31st</u></div>
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We had a good morning at church. Ethan has a great team of buddies, which allows us to attend Sunday School and the Worship Service. We are very thankful for this support. "<a href="http://irresistiblechurch.org/families-need-special-needs-ministry-doc-hunsley/" target="_blank">Why Families Need Special Needs Ministry</a>," is a must read for every church attender and clergy member. On Sunday evening we finally made it back to our small group. Sadly, Ethan had multiple seizures on the car ride there, but he was fine once we got there. Our small group is a huge blessing to our family. We have lived here for just over a year and a half, and have been getting to know this group of families for almost that long. After dinner together someone in the group was supposed to share their testimony, but somehow it ended up with Jeff and I sharing about our life with Ethan. [I'd like to encourage everyone to read a <a href="http://www.persucksisomalbiogenesisdisorder.blogspot.com/2016/02/blurred-lines.html" target="_blank">recent post</a> written by a fellow PBD-ZSD mom that provides a bit more insight into the many complicated emotions and thoughts that go through our heads and hearts every day.] Our friends have embraced us as a family and had a chance to ask some questions that perhaps they hadn't felt comfortable to do so before. I did a bit of crying, but that is to be expected. Since we do not have any family in the area, more than ever before we need our church family. We spoke honestly about our struggles and also admitted that we need their help, especially if/when God places another child in our family. When we headed home for the night we felt loved. We are even going to be teaching several of our friends how to use Ethan's feeding tube ---- they asked/volunteered to learn!</div>
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<u>February 1st</u></div>
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We started off the morning with a trip to the lab for fasting blood work. Thankfully, we didn't have to wait all that long and the blood draw went pretty smoothly. They collected so much blood! After the blood draw I fed Ethan his breakfast and gave him all of his medications, there in the waiting room, where we got to spend a few minutes visiting with a friend from church who is a nurse at the hospital, and then it was time to head to school. Right before I was leaving the house in the afternoon to pick Ethan up from school I got a call from the University of Iowa reminding us of his upcoming eye doctor appointment. I had written the appointment down for Wednesday (Feb 3rd) but the call said that it was Tuesday (Feb 2nd). Obviously, I was more than a little confused and concerned so I called back to speak to an actual person, and verified the appointment and learned that I must have written the date down incorrectly months ago when it was scheduled. So, I let them know that yes, we would be there, and double checked that they weren't going to be hit with a blizzard. They said, no, they were supposed to be okay, although other parts of Iowa were going to be hit hard. Thankfully, with the unexpected change in plans Jeff's dad was able to still arrange to come with us, since Jeff had to work, so he arrived at our house around 7pm.</div>
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<u>February 2nd</u></div>
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In order to be over in Iowa City for a 9:30am appointment, we left just a little after 6:30am. Ethan was not very happy about being woken up early (again) but we got up and around fine. The weather and roads were okay until we got a little bit into Iowa and then they started to get slick and a little slushy. We praised God for getting us there safe and although we had to loop around a bit before we found the parking garage, once we got that straightened out we were set. We made it on time and were seen by the first doctor, a low vision specialist, pretty quickly. Then we waited to see the second doctor, the retina specialist. That took a bit longer and we say a younger doctor first and then Ethan had to have his eyes dilated and then we saw the retina specialist. Although we spent most of the day traveling and at the eye doctor appointments it was worth it, because these doctors are amongst the top specialists in the country, and they take their time to talk with us, and they genuinely care for their patients. </div>
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<span data-ft="{"tn":"K"}">With how out of control Ethan's seizures have been (he had more than a half dozen short ones in the car on the drive over to Iowa City even) it was nice to get a good/hopeful report from the eye doctors. Both doctors were really pleased with how well he is using his vision and his retinas are stable and in decent shape. While the truth remains that Ethan is legally blind, we continue to focus on his functional vision and helping him use what vision he has to the best of his ability. They both agreed that right now Ethan's neuro issues are holding him back much more than his vision loss. </span>Dr. Stone, the retina specialist, also had his nurse take my blood and a skin biopsy (sample) from Ethan. They are going to grow Ethan's cells in the lab for research purposes. The more that they can learn about PBD-ZSD the more likely it is that new treatment options will be developed. Retinal gene therapy for individuals with PBD-ZSD may not be all that far away --- maybe even within the next 5 years. Increasing the vision of an individual with PBD-ZSD obviously won't cure the disease, but I know we would love to be able to have a way to improve Ethan's sight. For children who are deafblind, like Ethan, even if they don't have any other physical or cognitive impairment, we live in a world in which it is much more difficult for them to learn and be an active participant in. For more about the challenges deafblind learners face please read about the <a href="http://intervener.org/wp-content/uploads/2011/05/Pyramid-of-Learning-2013.pdf" target="_blank">pyramid of learning</a>.</div>
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<tr><td class="tr-caption" style="text-align: center;">Ethan's gift from the team at Iowa City!</td></tr>
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We currently have 4 more doctor appointments scheduled for this month: GI, ENT, Neurology and Genetics. </div>
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There are so many things that are on my heart and mind as prayer requests, but I'll just share a few.</div>
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<li>Pray for the salvation of those who do not yet know the Lord. That hearts would be softened and ears, minds be open. </li>
<li>Pray for wisdom for the doctors as they treat Ethan and for medical and/or supernatural interventions that would cause the seizures to be controlled and/or stopped.</li>
<li>Pray for those new to the devastating diagnosis of PBD-ZSD (or similar life limiting disease), those who are in the trenches of it (like our family), and those who are learning to live on the other side of this disease now that their child has passed. </li>
<li>Pray for the doctors and researchers who are dedicated to discovering treatments for rare diseases like PBD-ZSD.</li>
<li>Pray for churches across our country and throughout the world to engage families impacted by disabilities. Please read "<a href="https://drgrcevich.wordpress.com/2016/02/02/what-are-the-stats-on-disability-adoption-and-church-post-1-of-3/" target="_blank">What are the stats on disability, adoption and the church?</a>" part 1 of a 3 part series. </li>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-82174889924410566642016-01-26T00:27:00.000-06:002016-01-26T00:27:02.806-06:00Seizures, Seizures, Everywhere.....On the morning of Wednesday, January 13th around 8a.m., we checked in at our local children's hospital for a previously scheduled 24 hr EEG. Since Jeff needed to be at work we arranged for Jeff's dad to come up the night before and stay with Ethan and I at the hospital for part of the day on Wednesday, and for my mom to come up and spend the rest of the day with us at the hospital, until Jeff could join us after he got off of work.<br />
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Since this was a previously scheduled EEG, I expected that things should go pretty smoothly, as far as being admitted to the pediatrics floor and getting the procedure started. Ethan has had EEGs in the past and it has never been pretty. He hates to be held down and having 26 electrodes attached to his head is not something he finds enjoyable (at all)! In the past the EEGs have lasted about an hour, and this time it was supposed to last 24 hrs!!!! We knew that this wasn't going to be pleasant. We knew that it was going to be rough. </div>
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Unfortunately, there were lots of barriers to even get the procedure started, and all of us were getting rather irritated about the fact that due to miscommunications and possibly other things between multiple parties, the EEG didn't actually start until after 3p.m..</div>
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<tr><td class="tr-caption" style="text-align: center;">Ethan cried so much that by the time the tech was finishing attaching the electrodes/leads that he had worn himself completely out. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ethan's nap didn't last too long though and then he was up. </td></tr>
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For the most part Ethan did pretty good after he woke up. The wires were long enough that he could get out of the crib, a little, and we could roll everything over to the bathroom, etc. However, since another component of the test was video monitoring him, he did need to spend the majority of the time in the crib. </div>
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Not long after Jeff arrived after his long day at work my mom left and headed back home. Ethan was extremely happy to see his dad, and everything was okay until it was time for Ethan to go to sleep. He was so tired, but the electrodes were a huge issue because when Ethan is tired he rubs his head, so not once but twice we got him almost asleep and then he would rub his head and try to pull off the electrodes. This meant that we had to intervene and then there would be real tears and he'd be worked up and wide awake again. Thankfully, the third time which was after 10p.m. Ethan was asleep for the night and Jeff headed home to sleep and I tried to settle down for the night at the hospital. </div>
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Ethan slept through the night, but was pretty restless. I didn't get much sleep, partially because it is just hard to sleep when your child is in the hospital but also because I kept looking at the EEG monitor (which I have no clue how to read, but it was clear that the seizure activity was much worse while he was sleeping than I was aware of) and worrying and praying for my little boy. The nurses assured me that someone in EEG was monitoring Ethan's test remotely and would immediately contact the nurses if it looked like a seizure was potentially life-threatening so that his rescue medication could be administered. Obviously, we don't have this capability at home, so that made me worry even more.<br />
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In the morning we hung out for several more hours, saw the doctors on round and the neurologist checked in on us and said hello and that he'd see us on Friday for our scheduled appointment. After that we were able to start the process of getting discharged.<br />
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<tr><td class="tr-caption" style="text-align: center;">Ethan was so happy to have all of the electrodes/leads removed.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ethan remembered the lights from our previous visits. He enjoyed being able to turn them on and off.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I'm ready to go!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Wake me when we get home!</td></tr>
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Ethan was very happy to be home. The next morning (Friday) Ethan seemed tired, so I decided I would just keep him home, especially since we had our post EEG neurology appointment at 1pm. The appointment with the neurologist didn't go very well. We knew that the EEG was bad, but we didn't realize how bad it was. Basically, our little boy is having seizure activity almost nonstop, and by the time that we "see" one it is really bad. Also, some of his staring episodes are likely seizures as well, and we had assumed it was just a side effect of the medications he is taking. So, know we don't know when he is staring off and having a seizure or when he is just sort of zoned out. The neurologist also suspects that Ethan may have sleep apnea, which could be causing the seizures to be worse.<br />
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The game plan for now is to stay on the same medications and to explore the possible sleep apnea aspect. A sleep study has been scheduled, but isn't until near the end of March (first available) and we are trying to get in to see an ENT.<br />
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<u>Prayer Requests</u><br />
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<ul>
<li>An end to the seizures --- that God will either miraculously take them away and/or that the doctors will have the wisdom to know what has to be done so that the seizures can once again be under control. </li>
<li>Get an ENT appointment scheduled and see an ENT before the scheduled sleep study, because the sleep study is most likely going to be even worse than the EEG. We would like to know if Ethan's tonsils and adenoids might need removed, and if so wisdom about surgery.</li>
<li>Return of Ethan's balance and independent walking. Ethan is still walking, but because of the seizures and/or the anti-seizure medication he continues to be very unsteady. His walking now compared to what it was like in the fall before the seizure activity increase is dramatically different. </li>
<li>Praise for Ethan's continued toileting success. Pray that he would improve in his ability to be able to communicate his need to go to the bathroom. He is beginning to take my hand and walk me to the the bathroom here at home -- sometimes he goes, sometime he doesn't, but it is a start.</li>
<li>Increase in communication. Ethan's communication skills are still very limited. This is frustrating for us as his parents and for him too. I'm sure he thinks that the adults around him are really dumb for not being able to understand him.</li>
<li>That all three of us would be able to remain relatively healthy this winter despite all of the illness that seems to be going around. I worry about this a lot because a regular illness can be extremely tough on Ethan and although he seems to really enjoy school, there are so many germs at school!</li>
<li>Praise for Jeff's job that has allowed me to stay home so that I can be available for Ethan's many doctor appointments, therapy appointments and when he is sick or having a bad seizure day. Pray that Jeff would be strengthened and have the wisdom and knowledge necessary to continue to do a good job at work.</li>
<li>Wisdom about adding to our family someday. The desire for additional children hasn't gone away. Ever since Ethan's diagnosis we have felt that if we were to have additional children that they would come to us through adoption. We have been licensed foster parents for nearly a year and we have not yet said yes to a placement, as there are lots of things to consider. Our desire is for a child under the age of 5, but we would prefer under the age of 3 and to be perfectly honest I would love to be able to adopt a child who we had cared for since they were an infant. So many children in this world experience trauma while they are still inside the womb and/or after they are born. My heart aches for them. In the recent month or so my heart strings have especially been pulled for the millions of orphans outside of the USA and although I haven't felt that international adoption is the way that we will build our family, I still find myself praying for forever homes for children everywhere. My heart also aches that in order for us to add to our family by adoption that means that a child isn't able to be raised by it's birth family. This is a very humbling thing to think about and at times brings me to tears. Please pray that we would lean on God and that we would be patient as we wait and that we would be very aware of when we should say yes to a child and that hearts would be protected. </li>
<li> Pray for wisdom and clarity of understanding for the doctors and researchers who are studying PBD-ZSD and/or treating individuals with PBD-ZSD. Although there are many others who are working hard in labs in the US, Canada, and in Europe, if you'd like to pray for members of GFPD's Scientific Advisory Board by name, you can find them on our <a href="http://www.thegfpd.org/#!scientific-advisory-board/c1l1x" target="_blank">website</a>. Pray that 2016 will be the year that breakthroughs will be made that will lead to life changing treatment options for those impacted by PBD-ZSD. Members of the GFPD's Scientific Advisory Board have dubbed this to be the "Year of the Peroxisome," and I pray that they are right. I was corresponding with one of the top PBD-ZSD specialists today and here are her exact words to me, "Thank
you Pam, the ' Year of the Peroxisome’ is definitely unfolding in many exciting
ways! Please
tell Ethan- this is his year!" Even now it is hard to not be emotional about the possibility that this could be the year in which effective treatments that would improve Ethan's quality of life are discovered. </li>
<li>Pray for the<a href="http://www.thegfpd.org/#!board-of-directors/c1rvq" target="_blank"> leadership</a> of the GFPD. We are all volunteers and we are parents of children (living or who have passed) impacted by PBD-ZSD and it is our desire to serve and support families like ours and to help in furthering the research efforts through fundraising and grants to those that are studying PBD-ZSD. </li>
<li>Pray for all the parents whose children have passed away from PBD-ZSD. Tonight as I talked on the phone with a dear friend whose child is in heaven, and shared with her through tears the email message above, my heart was breaking in the midst of the joy that perhaps the doctors and researchers are on the brink of something amazing, because it already too late for my friend's daughter and so many other children. PBD-ZSD is a complex disease, and I don't know if it is God's will that this will be the year in which discoveries will be made that will give Ethan and other children the chance of a better quality of live, but as optimistic as I am that something great is coming very soon, I am still hesitant because there is simply so many unknowns and saddened by how many children have not and will not survive long enough to benefit. We have been part of the Global Foundation for Peroxisomal Disorders for more than five years and so many of my friends have lost children to this devastating disease in that time. For a better understanding of how these losses affect me, please take a few minutes to read the post, "<a href="http://themighty.com/2016/01/when-a-child-with-your-childs-disorder-passes-away/?utm_campaign=site_fb&utm_source=facebook&utm_medium=social" target="_blank">When a Child With Your Child's Disorder Passes Away</a>." </li>
<li>Salvation of friends and family who do not yet know the Lord. Pray that we would be faithful witnesses and that they would see our dependence on the Lord and that hearts would be opened and lives transformed by the power of God's grace and love.</li>
</ul>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-26014563195585945562016-01-04T01:41:00.001-06:002016-01-04T01:41:22.407-06:00Rough day....<div>
It wasn't a great day for Ethan. Although he did okay at church, he had several seizures during his nap after we got home from church. For the last several days the seizures seem to be contained to nap time, and we have no idea why and this evening, Ethan was just not his usual self. It took him much longer than usual to fall asleep -- more than an hour later than what is pretty typical for him. We aren't really sure what is going on, but he did just have another medication change on Friday (the dose of Onfi continues to slowly decrease, as the dose of Phenobarbital continues to slowly increase) so that might be why he is acting different. </div>
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I am scared. I hate PBD-ZSD so much. I hate the seizures, I hate the physical and cognitive disabilities and the health issues that come with it. I hate that we don't yet have effective life-saving treatment options (or a cure). I hate that so many of my friends can no longer hug their children and kiss them goodnight, and I hate that someday I will likely be in the same situation. I love my son, but I hate this disease. I hate that PBD-ZSD touches every aspect of our lives and that it is so hard for me to be able to find joy, peace, and contentment when my human mommy heart just wants my son to be healed. I want to be able to have a conversation with with him, I want him to be able to do all the things a normal, typical five and a half year old boy does, but all of those things have been stolen because of PBD-ZSD. I'm pretty sure that PBD-ZSD has made me not a better person but a more bitter person. I am in a place right now that I am really struggling with fear, worry, hatred, jealousy, anger, discontentment and envy [to just name a few of the sins that I am currently wallowing in]. I just want to scream at the top of my lungs, "It's not fair. Lord, I know You have the power and ability to heal my son, but that that might not be Your will for Ethan and for us, and I don't like that at all!"</div>
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I've read more about grief and suffering than I think I would have ever done if our world wouldn't have been completely shattered because of PBD-ZSD, and I have to admit that although I have been a born-again Christian for more than half of my life and I still don't fully understand a lot of things. I also know that although I am sad and mad and frustrated and all the other things I mentioned above, that I'm not completely hopeless, because ultimately I have hope because of what Christ has done. God's love for me, a sinner saved by grace, is amazing, because there is nothing that I've done to earn it and there is nothing that I can do to lose it. </div>
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"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life."</div>
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John 3:16</div>
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" I give them eternal life, and they shall never perish; no one can snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father's hand. I and the Father are one."</div>
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John 10:28-30</div>
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For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.</div>
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Romans 8:38-39</div>
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This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins.</div>
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1 John 4:10</div>
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This morning our pastor's sermon was titled "<a href="http://bethanycentral.org/resources/marveling-gods-message/" target="_blank">Marveling in God's Message</a>," and focused on Psalm 119:1-16. It was a powerful and convicting sermon. One of the songs we sang this morning is "<a href="https://www.youtube.com/watch?v=V0vfz5lr37g" target="_blank">All I Have Is Christ,</a>" and as we sang I couldn't hold back the tears. I am so guilty of frequently not living a life that reflects the words that I sang. Jesus is my Savior and Lord. I have assurance that because of His sacrifice, His love, His grace, and His mercy that I have been forgiven of my sins (past, present, and future) and one day when I stand before God I'll be accepted because Jesus paid the price for my sin. However, I'm not always a very good witness to the world of the hope that I have in Christ. </div>
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I think part of my reaction to "All I Have Is Christ," this morning stems from my failing to spend the time I should in God's Word. There have been times in the past where I seemed to be doing pretty good at digging into my Bible and other times which I have pushed it aside -- not because I no longer believed it, but simply because I chose to not make it a priority. My prayer is that in 2016 that I would grow closer to God, and I know that reading God's Word is a crucial component of deepening that relationship. </div>
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My reading/reflection for today (<a href="http://www.swtblessings.com/" target="_blank">January 31 Day Scripture Writing Plan</a>) really spoke to my heart, since I will freely admit that I am struggling to see the beauty in our current circumstances.</div>
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He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end. I know that there is nothing better for men than to be happy and do good while they live. That everyone may eat and drink, and find satisfaction in all his toil - this is the gift of God. I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that men will revere him. Whatever is has been, and what will be has been before; and God will call the past to account. </div>
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Ecclesiastes 3:11-15</div>
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<u>Notes about these verses from my Life Application Bible:</u></div>
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3:11 - God has "set eternity in the hearts of men." This means that we can never be completely satisfied with earthly pleasures and pursuits. Because we are created in God's image, (1) we have a spiritual thirst, (2) we have eternal value, and (3) nothing but the eternal God can truly satisfy us. He has built in us a restless yearning for the kind of perfect world that can only be found in his perfect rule. He has given us a glimpse of the perfection of his creation. But it is only a glimpse; we cannot see into the future or comprehend everything. So we must trust him and and do his work on earth.</div>
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3:12 - To be happy and do good while we live are worthy goals for life, but we can pursue them the wrong way. God wants us to enjoy life. When we have the proper view of God, we discover that real pleasure is found in enjoying whatever we have as gifts from God, not in what we accumulate.</div>
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3:14 - What is the purpose of life? It is that we should revere the all-powerful God. To revere God means to respect and stand in awe of who he is. Purpose in life starts with whom we know, not what we know or how good we are. It is impossible to fulfill your God-given purpose unless you revere God and give him first place in your life.</div>
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If you happen to see me or talk to me while I'm stuck here in this valley, please know that I have good days and bad days. Some days I don't let PBD-ZSD get the better of me, but other days the sorrow is nearly overwhelming. Although it might not always look like it, I am leaning on God for strength, and I might be a mess, but I'm thankful that I am His mess. I'd also like to ask that if you do not yet know Jesus as your personal Savior and Lord that you don't let my shortcomings, sins, and struggles get between you and eternity. If you are interested in learning more about God and His love for you, please check out the "<a href="http://thejourneyweareon.blogspot.com/p/finding-hope.html" target="_blank">Why do I have hope?</a>" and the "<a href="http://thejourneyweareon.blogspot.com/p/i-couldnt-have-said-it-better.html" target="_blank">Their Words, My Thoughts {Recommended Reads}</a>" sections. </div>
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Would you please pray for Ethan, Jeff and I? </div>
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<ul>
<li>Pray that we would feel God's presence, eagerly seek Him and remember to keep trusting His promises when we find ourselves overwhelmed by the current struggles of this life.</li>
<li>Pray for a solution to the continued seizures and that our little guy would be able to get back to where he was several months ago in regards to his overall happiness, alertness, health, and mobility. </li>
<li>Pray for breakthroughs in science that will lead to effective life-changing, life-saving treatment options for children born with PBD-ZSD. </li>
</ul>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com1tag:blogger.com,1999:blog-8854103311595149077.post-12736083578907449702016-01-01T23:03:00.001-06:002016-01-01T23:03:24.100-06:00Goodbye, 2015! Hello, 2016!As 2015 came to a close last night I couldn't help but think about all that has happened and how much has changed in the last twelve months.<br />
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<ul>
<li>Ethan got his own car, thanks to the Metamora H.S. robotics team!</li>
</ul>
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<li>Ethan had PT in the pool for the first time!</li>
</ul>
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<ul>
<li>We celebrated Rare Disease Day 2015!</li>
</ul>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQqZWsK0565Mi7PndgHmgACuXOmsukTxfuHEy7Dc0B9sGr5CCT4vRJ-quIDuam8GUdr8BhLN_rzpwpHbSoo9usCjlRgZbYzOnqysTexOSBjiceO7XcBmXBjAugHjJwK8fW5xyMs8ITTHI/s1600/11034451_10155230783690293_1708143442283093531_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQqZWsK0565Mi7PndgHmgACuXOmsukTxfuHEy7Dc0B9sGr5CCT4vRJ-quIDuam8GUdr8BhLN_rzpwpHbSoo9usCjlRgZbYzOnqysTexOSBjiceO7XcBmXBjAugHjJwK8fW5xyMs8ITTHI/s320/11034451_10155230783690293_1708143442283093531_o.jpg" width="180" /></a></div>
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<ul>
<li>I spent the night away from Ethan for the first time EVER. I actually did this on two separate occasions. Jeff and Ethan did better the second time around then they did the first, but I'm so glad that I was able to go on the short trips, even if it took me away from them. The first was to OK where I was able to visit with two fellow PBD-ZSD families. For the second I road the train from Bloomington to Chicago for the first time and attended a NORD conference in Downtown Chicago. </li>
<li>Several dear close friends were forced to say goodbye to children who died because we still don't have life-saving treatment options for PBD-ZSD and thousands of other rare diseases.</li>
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<ul>
<li><span style="text-align: center;">Ethan went to a dairy farm for the first time!</span></li>
</ul>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWTxuHRxiOFBuaK2nwKbCqxC0LXJB0D3o-QZFNTZkFIbQjd11pdVbLU9ClMQgU6qxRbfh3vnDADyREDUnTUlyyDX6cLrsV659XZP4ERBKYrOC6b3NRPrNSjgoJw_P52HRH6xBRJKAC7yo/s1600/0421151059d.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWTxuHRxiOFBuaK2nwKbCqxC0LXJB0D3o-QZFNTZkFIbQjd11pdVbLU9ClMQgU6qxRbfh3vnDADyREDUnTUlyyDX6cLrsV659XZP4ERBKYrOC6b3NRPrNSjgoJw_P52HRH6xBRJKAC7yo/s320/0421151059d.jpg" width="180" /></a></div>
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<li><span style="text-align: center;">We met and have gotten to know another family who has a little boy who was born with PBD-ZSD that only live an hour away from us. This is practically being next door neighbors for those of us in the rare disease world, since PBD-ZSD has an estimated incidence rate of 1 in 50,000 births. We consider ourselves blessed to call this family our friends. </span><span style="text-align: center;">You can learn more about Max in the video below. </span></li>
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<li>We went on a mini vacation with Jeff's family in June and spent the 4th of July weekend with my family. </li>
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<ul>
<li>We attended the 2015 GFPD Conference in Omaha, NE. We always look forward to the opportunity that conference provides us to be with other families who understand this disease and how it affects us as a family. It also allows us to have Ethan seen by some of the top PBD-ZSD specialists in the world and to learn about the latest PBD-ZSD research. </li>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNEBtxO1BLiLDgMCMt1MC64QuNH5Eo67XcYClHB3shGWxYEIAZ3qdSf6Xrd4j408ltuqfQB8f2-mBwgamgVYXFPNAUabHXEZVL8OdFyf0V4clWfSiYyJNQe9MFmVJaHF_ZFzk_5ONF3ug/s1600/16998_10153206576879160_2984998530264650499_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNEBtxO1BLiLDgMCMt1MC64QuNH5Eo67XcYClHB3shGWxYEIAZ3qdSf6Xrd4j408ltuqfQB8f2-mBwgamgVYXFPNAUabHXEZVL8OdFyf0V4clWfSiYyJNQe9MFmVJaHF_ZFzk_5ONF3ug/s320/16998_10153206576879160_2984998530264650499_n.jpg" width="320" /></a></div>
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<ul>
<li>Ethan turned 5 years old, and we celebrated with a house full of friends and family.</li>
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<li>Ethan started his third year of preschool at a new building in a Deaf/Hard of Hearing Plus classroom. </li>
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<li>Ethan's mobility improved dramatically in August, September and October only to then rapidly decline when his seizures came back with a vengeance. Ethan is now incredibly unsteady, almost always needs to hold someone's hand and his endurance has dramatically decreased. </li>
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August</div>
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<li>Jeff joined Ethan and I for the class field trip to the pumpkin patch.</li>
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<ul>
<li> Ethan went bowling for the first time when his class went to the Bass Pro Shop.</li>
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<li>We enjoyed our first visit to our local Children's Museum/Playhouse during a family night sponsored by Easter Seals. </li>
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<ul>
<li>Unfortunately, November and December were marked with multiple trips to the ER and admissions to the hospital, all seizure related. Ethan and I had our first ride in an ambulance since he was transported from DMH to St. John's shortly after his birth. Sadly, we got to do this not just once, but twice -- both times from school to the hospital. </li>
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I know that 2015 was filled with as many good memories as bad, but it is hard to think of those when the last few months have been mainly consumed with fear, frustration and a sense of hopelessness, as we struggled with finding a way to get Ethan's seizures under control. Sadly, we are still struggling to determine what medication combination will be the best for him. Seizures are horrific. We hate them and how they (and the medications that are supposed to treat them) affect our little boy.<br />
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January and February are going to be filled with doctor appointments as we'll see Ethan's orthopedic, neurologists (yes, he currently has 2 as we transition his care from one who is two hours away to someone local), geneticist, endocrinologist, dentist, GI, and eye doctors. School will also be starting back up for Ethan soon, and hopefully the seizures won't keep him home too many days and/or I won't get too many calls to come get him due to the seizures, because our little boy really does seem to love school. We are very blessed that he has amazing teachers and therapists.<br />
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My plan is to follow a <a href="http://www.swtblessings.com/" target="_blank">31 Day Scripture Writing Plan</a> this month as a devotional. This morning's reading/writing/reflection was Isaiah 43:16-19:<br />
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This is what the Lord says -- he who made a way through the sea, a path through the mighty waters, who drew out the chariots and horses, the army and reinforcements together, and they lay there, never to rise again, extinguished, snuffed out like a wick: "Forget the former things; do not dwell on the past. See I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland. </div>
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I freely admit that not dwelling on the hardships, heartaches and disappointments of the past is easier said than done. However, I do know that as we begin this new year that I find myself, more than ever, depending on God to make a way in the desert and streams in the wasteland [of this life]. Not only do we face so much unknown in regards to Ethan's seizures and all other matters of our family life, all one must do is turn on or read the news to know that our world and people everywhere are hurting. As we begin 2016 it is my prayer than none of us will forget all that Christ has done. Rend Collective has a great song for this time of the year titled "For All That You Have Done" that is set to the tune of Auld Lang Syne that I encourage everyone to check out (see below).</div>
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Current Prayer Requests:</div>
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<ul>
<li>Salvation of friends, family, and all who don't know Jesus as their personal Savior and Lord.</li>
<li>A closer and deeper relationship with Christ for all those who already know Him [this especially includes myself] and that believers would feel His presence in mighty and powerful ways, and that our lives would reflect that we know Him.</li>
<li>Wisdom for all those who are studying PBD-ZSD and for the discovery of medical breakthroughs that lead to the creation of effective treatment options and ultimately a cure.</li>
<li>Patience, wisdom, guidance, strength, comfort, contentment, joy and peace for Jeff, Ethan and I. PBD-ZSD is hard on all of us!</li>
<li>An end to Ethan's seizures and that he will be able to regain his stability and strength of walking.</li>
<li>January is Sanctity of Life month and our church is collecting formula, diapers, pullups, children's socks and underwear, coloring/activity books, and crayons/colored pencils with the goal of blessing our local crisis nursery, pregnancy center and various foster care agencies with these much needed items. </li>
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JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-2140468724018587702015-12-19T23:14:00.002-06:002015-12-19T23:14:35.388-06:00An earlier than expected start to Christmas break for EthanThursday morning Ethan had a previously scheduled EEG, that had been ordered a couple of months back when all the crazy seizure breakthrough stuff begun. Obviously, the hope was that enough time would pass and that the medications would be working well and that the EEG would show that Ethan's seizure activity would be "under control." Since the last five to six weeks have been a real rollercoaster in terms of Ethan's seizures and so we weren't really sure what the EEG would show us.<br />
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<a href="http://www.epilepsy.com/information/professionals/diagnosis-treatment/basic-science-eeg" target="_blank">EEG's</a> are stressful for Ethan. He is sleep deprived, to start with, and then he is held down so that more than 20 electrodes are attached to his head. Then we have to try to make him sleep and not allow him to pull the electrodes off of his head. Ethan gets extremely agitated because he is being held down and people are touching him. After that, he is pretty exhausted from fighting and typically is able to eventually rest for the test. It is preferable for an individual to be asleep during the test, although it isn't required. <br />
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Thursday's EEG started out well, all things considered. Ethan got hooked up and pretty quickly after that was able to settle down and sleep. Jeff has been able to accompany us to the EEG's and he curls up with Ethan so that Ethan feels safe and will go to sleep. More than half way through the test Ethan began having seizures. They were lasting anywhere from 10 to 20 seconds each and began to cluster, one after another. At five minutes we gave him his rescue medication, diazepam, and although it took several minutes for the seizures to stop, they did. During this time the EEG technicians were still recording/monitoring because it allowed them to "see" that the seizures were stopping. The diazepam makes Ethan very sleepy, and so as began to really kick in the electrodes were taken off and Jeff and I comforted him while we discussed whether we needed to head down to the ER or if we'd be okay at home. Ultimately, we decided to go home since Ethan was sleeping and the seizures had stopped. We did ask the EEG technicians to go ahead and call the neurologist who would be reading the EEG and have them contact us if they felt that we needed to come back to the ER. <br />
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<br /><br />
So, we came home and Ethan was resting, taking a nap, so we felt comfortable enough for Jeff to head to work. Sadly, Jeff wasn't at work long before I called him to let him know that I had received a phone call from the nurse at the neurologist's office and that he had read the EEG and wanted Ethan to be admitted to the hospital for further observation with the hope that something could be figured out to help get the seizures back under control. Thankfully, because Ethan was doing okay at home, we were told that unless something changed that we could stay at home until someone from admitting called to let us know that there was a room available on the pediatric floor for him. This allowed us to not only take the time needed to pack and prepare but also eliminated the need for us spend hours in the ER. Several hours later the three of us were up at the hospital, and although it still took nearly an hour of waiting before we were settled into our room, I was so thankful that we didn't have to go through the ER to be admitted. <br />
<br /><br />
Soon after we arrived the nurses and the residents touched base with us and let us know that there wasn't going to be a lot done except having Ethan being observed. We spoke at length with the resident about why we were even being admitted if nothing was going to be done, but ultimately it came down to the fact that if we stayed that we'd get to see the neurologist in the morning, so we stayed. <br />
<br /><br />
On Friday morning we saw the neurologist, Dr. S. There is a huge shortage of pediatric neurologists nationwide, but specifically in IL, especially in our area of the state. Our local children's hospital has had a lot of trouble staffing the neurology department and we have been trying to get a neurologist here since we moved in July 2014. One way that they are doing this is by "contracting" neurologists, so Dr. S., comes to our children's hospital one week a month, during which he not only sees children who are hospitalized but will also see a limited amount of patients in clinic (for regularly scheduled appointments). Jeff and I both liked Dr. S., who admitted that although he had seen two other children with PBD-ZSD in the past, Ethan is the oldest and most "mildly" affected that he had ever seen and that he was surprised to see Ethan doing so well. Dr. S. spent a long time with Ethan and us, and told us that he would do a bit more reading and would comeback in the afternoon with a game plan. He was also very open to contacting the PBD-ZSD specialists, which is very important to me, because not only have many of the top PBD-ZSD specialists in North America seen Ethan in clinic during the GFPD conferences, but it also lets us know that he is a team player. <br />
<br /><br />
After Dr. S. returned in the afternoon it was decided that we would start slowly decreasing Onfi, increase Topamax, keep Keppra the same (this was recently increased), and begin introducing <a href="http://www.epilepsy.com/medications/phenobarbital" target="_blank">Phenobarbital</a>. We also have an appointment to see him in 4 weeks and we will be admitted to the hospital for a 24 hour EEG earlier in the same week as the appointment so that he can see how the new medication regiment is working. We have a detailed decreasing Onfi and increasing Phenobarbital schedule that we will be following between now and then. While Dr. S. is only in our area for one week each month he is available by phone and email. There is also a nurse practitioner, who has extensive experience in neurology, who will meet with us during our upcoming appointment who will also be a part of Ethan's care team. <br />
<br /><br />
By the time we arrived home last night we basically bathed Ethan, feed him, and then it was bedtime. We were all exhausted. Being in the hospital, for even one night, is draining, and then was an "easy" stay because Ethan didn't have an IV and wasn't hooked up to anything. Although, we hadn't expected to start Christmas break off this way, since Ethan was supposed to go back to school on Thursday after the EEG and then have outpatient PT that afternoon, and Friday he was going to have an orthopedic appointment in the morning before going to school for the last day of school for the year, it is what it is. <br />
<br /><br />
Ethan was really tired today. The changes in the medications seem to really impact his energy level, and we are hoping and praying that over the next two weeks while he is on Christmas break his little body will begin to adjust and he will be less sleepy. We want to (and need to) stop the seizures, but we also don't want Ethan to be drugged up all the time. I want to see my little boy's smile and personality and there is always a fear that the drugs that are designed to control the seizures could steal his smile and personality away from us in the process. We do not want that to happen. <br />
<br /><br />
<br /><br />
<u>Prayer Requests</u><br />
<ul>
<li>Wisdom for the medical professionals to prescribe the right medications and doses of those medications so that Ethan's seizures will be controlled and he will have the least amount of side effects possible.</li>
<li>An end to the seizures and that Ethan (and us) would never have to deal with them again.</li>
<li>Effective treatment options and ultimately a cure for PBD-ZSD in Ethan's lifetime, that would be available in time to help us give Ethan a better quality of life.</li>
<li>Wisdom, guidance, patience and strength for Jeff and I as we join in the decision making process in regards to how we treat the seizures and manage the possible side effects.</li>
<li>Strength and energy for Ethan as his body adapts and that he will be able to continue to learn and make progress in his own way.</li>
<li>Peace and joy during the Christmas season, as it is extremely difficult to get into the Christmas spirit while things seem so uncertain and our energy is spent elsewhere. </li>
<li>For hearts and lives to be transformed by the gifts of love and grace of Jesus Christ. </li>
</ul>
<div>
</div>
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com1tag:blogger.com,1999:blog-8854103311595149077.post-26153277198591397042015-12-09T21:39:00.003-06:002015-12-09T21:39:39.957-06:00Big Day - Field Trip to Bass Pro & Easter Seals Family Night at the Playhouse Children's Museum!Ethan was so tired tonight. He had a busy day at school, which also included a field trip to Bass Pro to meet Santa and to go bowling, and then this evening we had our first visit to the Playhouse Children's Museum. <br />
<br /><br />
More importantly though, here's a quick medical update:<br />
<ul>
<li>We are thankful to report that for the last two days no one has seen any seizures, so we are hoping and praying that this most recent increase in his medications might be making a difference.</li>
<li>Our current neurologist (the one who is 2 hours away) called in a stronger dose for the diazepam. Ethan had been prescribed a 2.5 mg dose by the neurologist who saw him when he was hospitalized last month, but since it has not stopped the seizures the last 2 times it was administered, our neurologist calculated that a 7.5 mg dose is more appropriate for his weight. So our hope is that the new dose will stop the cluster seizures, if they occur again. Obviously, the goal is to not have a need to use the rescue medication and to find a way to keep the seizures under control for good, however having the diazepam stop the cluster seizures allows for us to care for Ethan at home, unless there is a change in his breathing, etc., without needing to go to the hospital. A dear friend is going to be sending us a <a href="http://www.hopkinsmedicine.org/healthlibrary/test_procedures/pulmonary/oximetry_92,P07754/" target="_blank">pulse ox</a>, which we will be able to use to check Ethan's oxygen levels during and after a cluster seizure and the administration of the diazepam. </li>
<li>I heard back from our DSCC care coordinator, and just like we had both assumed, Ethan is still nowhere near close enough to scoring the points required to be eligible for the MFTD Medicaid waiver. </li>
</ul>
Now to the fun stuff! <br />
<br /><br />
Pictures from the field trip to Bass Pro:<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/AVvXsEgGTC4OZV2jaXZf7A6Ve7Zi5RD4fX6Qy3cQfWGt5vcdL3nqBiJWkF74bAsB96iipHnQWcZMpGVE3i6qe00R6MRZ7h_L3TJQv71cTO7LCNa11B4yRl6mZVb1nkJYr5dMRRWUDP0XLc3WpIg/s1600/1209151030b.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGTC4OZV2jaXZf7A6Ve7Zi5RD4fX6Qy3cQfWGt5vcdL3nqBiJWkF74bAsB96iipHnQWcZMpGVE3i6qe00R6MRZ7h_L3TJQv71cTO7LCNa11B4yRl6mZVb1nkJYr5dMRRWUDP0XLc3WpIg/s320/1209151030b.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Look, Mom, I found a door. Can we leave?"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTvOTV6BLpm32MQhZKB5kdli2vjHzbjDDsr9h16tI28_Vcfed5cxRU-0CoRHqa6m2Jj0rgWpnJ_fya-yTnZkPUiiEzivgzDmqBi348uYExIN0M4L-0IvGwaJQ4Y1ifR0dUcwaO3hUPck/s1600/1209151030c.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTvOTV6BLpm32MQhZKB5kdli2vjHzbjDDsr9h16tI28_Vcfed5cxRU-0CoRHqa6m2Jj0rgWpnJ_fya-yTnZkPUiiEzivgzDmqBi348uYExIN0M4L-0IvGwaJQ4Y1ifR0dUcwaO3hUPck/s320/1209151030c.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"What do you mean we have to stay? We've been here for 10 minutes already."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqinvtsgJluRMB_q3S9rzXmoJMPCKiMjLsWMhGEx4V1MeSOFUr7vbNXfQ3_n8YbTQ77WLloQIXw_E6gMIZD_rSp0swEZIhGeIyFVeHRelFPRfoSF9VBTKDk_3gh4fEiB7YjRCIQr0QMrE/s1600/1209151045a.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqinvtsgJluRMB_q3S9rzXmoJMPCKiMjLsWMhGEx4V1MeSOFUr7vbNXfQ3_n8YbTQ77WLloQIXw_E6gMIZD_rSp0swEZIhGeIyFVeHRelFPRfoSF9VBTKDk_3gh4fEiB7YjRCIQr0QMrE/s320/1209151045a.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"I don't care for bowling, but the lights and this shark were pretty cool."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsWkvdvOJVJdHwm50S4fez9o-AvL9P6yl4te_GZh1CFL_X-giRXAG3mMx8jxkjuOnIk-R6AIhq7trhJLDMj-CQi6Qj7BbRg2DuXCQnsf2PIMPGip1vDKnEnOv4uflWYXi5xhjtl4wn0DQ/s1600/1209151045b.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsWkvdvOJVJdHwm50S4fez9o-AvL9P6yl4te_GZh1CFL_X-giRXAG3mMx8jxkjuOnIk-R6AIhq7trhJLDMj-CQi6Qj7BbRg2DuXCQnsf2PIMPGip1vDKnEnOv4uflWYXi5xhjtl4wn0DQ/s320/1209151045b.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Mom, why do you want pictures of me with a shark? Should I be worried?"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxhnVlDFhl5lmZ5kIe2YGUeYGGdGoY11joSSMSlleqvs9VCdFitYUonQx9LPpiEzHiIoiFY97VksM0UIA9btKRroBCyXsQrwFpCovqkBP_oE9o2OJyW45Em_x06_PLctNlyuNOen9qh9o/s1600/1209151045e.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxhnVlDFhl5lmZ5kIe2YGUeYGGdGoY11joSSMSlleqvs9VCdFitYUonQx9LPpiEzHiIoiFY97VksM0UIA9btKRroBCyXsQrwFpCovqkBP_oE9o2OJyW45Em_x06_PLctNlyuNOen9qh9o/s320/1209151045e.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Really, another one?"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ75qOWvPxT0_cYXSOd29ftvHINL-l9CBn73M-nisH_5VKiAZ-N3jK6kTg7kA2n4HG5wtwb_BjQQd79PH2XKpzLvHW9IN7rXZMXF6MuFM9IuTG7EnGwo5eGb0YIomRweBbJimaOSEMvlI/s1600/1209151046_Burst01.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ75qOWvPxT0_cYXSOd29ftvHINL-l9CBn73M-nisH_5VKiAZ-N3jK6kTg7kA2n4HG5wtwb_BjQQd79PH2XKpzLvHW9IN7rXZMXF6MuFM9IuTG7EnGwo5eGb0YIomRweBbJimaOSEMvlI/s320/1209151046_Burst01.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"This is as much of a smile as you are going to get from me."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGz4kmAUDn6OKUgC3JH2UqWaNeVGd2IMzXcD6ZxbXOfZbng5VOWGk458IR6gfGIqzK4dov_tEhTBcqAPO1CzTgnJTWCXFv2nq8xV1dYe0ZT311N3y4EkjYY1OzZMVfKsLpEDmPY9pwKD0/s1600/1209151056.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGz4kmAUDn6OKUgC3JH2UqWaNeVGd2IMzXcD6ZxbXOfZbng5VOWGk458IR6gfGIqzK4dov_tEhTBcqAPO1CzTgnJTWCXFv2nq8xV1dYe0ZT311N3y4EkjYY1OzZMVfKsLpEDmPY9pwKD0/s320/1209151056.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Can we please go back to school now?"</td></tr>
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Pictures from the Playhouse Children's Museum (It was a family night for families of children with special needs sponsored by Easter Seals and we were very thankful that it wasn't crowded and admission was discounted. Ethan had a good time, and we stayed an hour, but that was about all that he could handle.):<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm2WsseCnwu8AdyK-Q1zTlThZq-AsJXBqEwJcD0mjCk0BhF9jjYnto5tBJJWe5FycYqw_KVaqSWoib9tUwLAeTmep7x_5e_yI2jmwwDg0LNBjgapitjfQ50viyeAxzoE0y0WnLcDL1ygk/s1600/1209151739b.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm2WsseCnwu8AdyK-Q1zTlThZq-AsJXBqEwJcD0mjCk0BhF9jjYnto5tBJJWe5FycYqw_KVaqSWoib9tUwLAeTmep7x_5e_yI2jmwwDg0LNBjgapitjfQ50viyeAxzoE0y0WnLcDL1ygk/s320/1209151739b.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Are you sure you know what you're doing, Dad?"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJRLbu6OekWGCHGdpA0_DXOlKanurTo9qZ6e-0iKqZDHtz13l_81D931Szyb9QENGVEF2SavKrOFBZlqJiBTMaUwmlsOv_S_7Fw1AVRO5Llj212UVb4_1qeCDg1y-rgRHv_Ysm__BiCgU/s1600/1209151747.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJRLbu6OekWGCHGdpA0_DXOlKanurTo9qZ6e-0iKqZDHtz13l_81D931Szyb9QENGVEF2SavKrOFBZlqJiBTMaUwmlsOv_S_7Fw1AVRO5Llj212UVb4_1qeCDg1y-rgRHv_Ysm__BiCgU/s320/1209151747.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"I've always wanted to drive a combine. Great Grandpa Troutt will be so proud of me, when he hears about this."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGat2ZzPtEU-cCmLDvNEsvUThsSog3FTqlAyeRsMMJjBghgYgK8p38fnsdcLbQ8kRiRwooZIDVyxwr5bVBzJ6nsuov0Y9BOmmQ6RYsn0LEbjXttG6_gM4G_nWse7maZt35AhbYjieMMYM/s1600/1209151801.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGat2ZzPtEU-cCmLDvNEsvUThsSog3FTqlAyeRsMMJjBghgYgK8p38fnsdcLbQ8kRiRwooZIDVyxwr5bVBzJ6nsuov0Y9BOmmQ6RYsn0LEbjXttG6_gM4G_nWse7maZt35AhbYjieMMYM/s320/1209151801.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Wow, they put corn in a lot of stuff!"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxkhAPCBrM0DQsYjWClDS_lR2vdE-HO8lW7eSagGj1fzWDOrENPD1KVisRq9wuXZlSvgZTLXxVuMIiL1eOm7x7NlHm30f0hD4u5lEHg8BHiMu_mLFsaH8yRo6OV-ibw-cIdNYLg-lTuOI/s1600/1209151801a.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxkhAPCBrM0DQsYjWClDS_lR2vdE-HO8lW7eSagGj1fzWDOrENPD1KVisRq9wuXZlSvgZTLXxVuMIiL1eOm7x7NlHm30f0hD4u5lEHg8BHiMu_mLFsaH8yRo6OV-ibw-cIdNYLg-lTuOI/s320/1209151801a.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Thanks, Dad for helping me play the matching game, but why do they put corn in everything?"</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">"Light table and magnet shapes - score!"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6fV_QyMcBrkGoso9LZI0bGpnEHe0US30wSms06wH-RezZdqVwp8lf6U6znTQPbssG4LqgxHLjtz4eThyl6VIM_YZSQJ-vXd6zybPT6VrW8IHqURFYu4WYEg7RcIzXyO1U3vkoy-DPCuI/s1600/1209151814.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6fV_QyMcBrkGoso9LZI0bGpnEHe0US30wSms06wH-RezZdqVwp8lf6U6znTQPbssG4LqgxHLjtz4eThyl6VIM_YZSQJ-vXd6zybPT6VrW8IHqURFYu4WYEg7RcIzXyO1U3vkoy-DPCuI/s320/1209151814.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"You want me to put my hands in there..."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOnesNU3-1IXYpmNmSxVzsWTQQpCjmtaYGJF0n0xLHtGYO_7_6r1UBmGjfqUuvMzVEOR-7APkF9nrV8Hj8TsHcNvDXLSuPEagqzfdN87p7-DN1FswU1catM62BxglIJBbcCN6wlwRmVyU/s1600/1209151815.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOnesNU3-1IXYpmNmSxVzsWTQQpCjmtaYGJF0n0xLHtGYO_7_6r1UBmGjfqUuvMzVEOR-7APkF9nrV8Hj8TsHcNvDXLSuPEagqzfdN87p7-DN1FswU1catM62BxglIJBbcCN6wlwRmVyU/s320/1209151815.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"I'm not so sure about this..."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQl68URDq4fuUrkPTPxrge0W-xzP1cQ3dpJgVXtAb1PTIakQBp0z0blVXj0u6vH3w4_Xy8QUK9OpbqTbWywD-IfAYdOkh_gDIprZXtwEE2tb_SNjeSZDjnmTAkblY0q1w1WY-MfwrfLk8/s1600/1209151815a.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQl68URDq4fuUrkPTPxrge0W-xzP1cQ3dpJgVXtAb1PTIakQBp0z0blVXj0u6vH3w4_Xy8QUK9OpbqTbWywD-IfAYdOkh_gDIprZXtwEE2tb_SNjeSZDjnmTAkblY0q1w1WY-MfwrfLk8/s320/1209151815a.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Okay, maybe just a little..."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOxZ8AI9GiQBSs0V_gdpuBKc2nRJW64n5ZfJcFnMl6gzt5nSUyFB4aS07RySp_HPRHDQCWhi8BNAznGN02zss3Xfdg-g6iYtFmKRLyvrU6sVQVGQ9HOY-fvbPSxniwbEp2CsWoU9SNCyo/s1600/1209151819.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOxZ8AI9GiQBSs0V_gdpuBKc2nRJW64n5ZfJcFnMl6gzt5nSUyFB4aS07RySp_HPRHDQCWhi8BNAznGN02zss3Xfdg-g6iYtFmKRLyvrU6sVQVGQ9HOY-fvbPSxniwbEp2CsWoU9SNCyo/s320/1209151819.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Look at all the butterflies!"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfJ7x0XzBiWyvLQeIDlF8_tAbERz0Lyzk-EsxDCU6lcCchnj7B8WeeyucIZjCq9KQCksWAN6Ln4t78faExjdm2guZDHciImXkPc_o6VMS5YtF8XSYjTQ_tUHfgPJ4_6RNwQF7BufgtjZ0/s1600/1209151819a.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfJ7x0XzBiWyvLQeIDlF8_tAbERz0Lyzk-EsxDCU6lcCchnj7B8WeeyucIZjCq9KQCksWAN6Ln4t78faExjdm2guZDHciImXkPc_o6VMS5YtF8XSYjTQ_tUHfgPJ4_6RNwQF7BufgtjZ0/s320/1209151819a.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"They are landing on our shadows."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKiJCYVv1eDuBwtwV61WhHoEbBqMxtHYGj2EJsP4PicRLdBOr9cf8vtcoQkO3_ljfEP9jmcpp-Q02J8mSp8PQTcWzH84cNwxn5sIVrjhnuBupONSpfXhDinb2Z0qZOMOVfyyw-xmDu7ZE/s1600/1209151741a.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKiJCYVv1eDuBwtwV61WhHoEbBqMxtHYGj2EJsP4PicRLdBOr9cf8vtcoQkO3_ljfEP9jmcpp-Q02J8mSp8PQTcWzH84cNwxn5sIVrjhnuBupONSpfXhDinb2Z0qZOMOVfyyw-xmDu7ZE/s320/1209151741a.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"How does this work?"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOR85rHgiS4oqI_hY6aEMNS9j8txC97FTitKB7OYMQSDN0gpICPvZygJf8yiZ8pyLI6zWUFp_zWW4ba-vePrazN8MFjEY9wm39YFV1Evxy5A0WYP-WWSQir9w1aYmfK8fNUD-lOiF-BaM/s1600/1209151742.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOR85rHgiS4oqI_hY6aEMNS9j8txC97FTitKB7OYMQSDN0gpICPvZygJf8yiZ8pyLI6zWUFp_zWW4ba-vePrazN8MFjEY9wm39YFV1Evxy5A0WYP-WWSQir9w1aYmfK8fNUD-lOiF-BaM/s320/1209151742.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Oh, I figured it out!"</td></tr>
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0tag:blogger.com,1999:blog-8854103311595149077.post-35487746306702201442015-12-08T15:10:00.000-06:002015-12-08T15:10:09.864-06:00Here we go again!Yesterday, our family got to take another trip to the ER.<br />
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Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER.<br />
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By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist (who is 2 hours away) and she directed us to increase his Onfi again (we had just increased it on Saturday).<br />
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We were home before 11am and Ethan was a little tired but otherwise playing like he usually does. He did take a good nap from about 1:15pm to 2:45pm and woke up ready to play, and still went to bed for the night a little after 8pm without much fuss. We didn't see another seizure all day and friends from our small group at church made us dinner, which was very nice (and delicious).<br />
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This morning I took Ethan to school and then stuck around for a little while. I spoke with the nurses who care for him at school and then saw him working with his OT and then during circle time. I left around 10am, and so far, things must be going okay (it is a little after 2pm right now) because I haven't gotten a call from school.<br /><br />I've spent much of my day on the phone.<br />
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<ul>
<li>I spoke with Ethan's DSCC care coordinator to see if the recent changes in seizure activity and the subsequent ER visits make a difference in making Ethan eligible for our state's Medically Fragile and Technology Dependent (MFTD) Medicaid waiver program, which would allow Ethan to have Medicaid as a secondary insurance and access to other services such as respite care. Unfortunately, the care coordinator does not think Ethan will "score" high enough to be eligible, but she is going to double check with others in her office who are care coordinators for children on the MFTD waiver. [Every state gets to decide under what circumstances a child with disabilities, whose family's income is above the cutoff to financially qualify for Medicaid, can be eligible for Medicaid, and the qualifications/requirements vary greatly by state. IL is one of the worst states when it comes to services for children and adults with disabilities.]</li>
<li>I spoke with the nurse at Ethan's neurologist's office and she is going to talk to the doctor and get back to me. I wondered if the strength/dose of Ethan's rescue medication might need to be raised, and if the reason it wasn't stopping the seizures was because it simply wasn't strong enough. My hope is that a higher dose is still considered safe for my little guy and that if the need arises to use it once again that it would actually stop the seizures, and then we could simply monitor him closely at home as long as his breathing is fine, etc. </li>
<li>I spoke with Ethan's nurse case manager through his pediatrician's office, filling her in on the last several days and asking her to talk to Ethan's pediatrician about a number of things, including if she could find out if the new neurologist that we are hoping to get Ethan into next month (we still don't have an appointment) is a doctor who is a supporter of the use of medical cannabis (marijuana) for children with uncontrollable epilepsy. I also asked her if she would get our pediatrician's thoughts on it. At this point we are very open to learning about all the possible avenues we could take to try to get these seizures under control. </li>
</ul>
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Prayer Requests:</div>
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<ul>
<li>All the same requests from <a href="http://thejourneyweareon.blogspot.com/2015/12/racking-up-frequent-flyer-miles-at-our.html" target="_blank">Sunday</a>. </li>
<li>Ethan has a field trip tomorrow. I pray that he would be able to go on it (I'll be going with) and that he won't have any seizures while we are out in the community visiting Santa. </li>
<li>Wisdom about medical cannabis. I have begun reading more about <a href="https://cwbotanicals.com/" target="_blank">Charlotte's Web</a>, which is a hemp oil, and therefore is legal and available for use without a medical cannabis card. We have not yet pursued a medical cannabis card for Ethan, and the oils are not yet available at the Illinois dispensaries, so even if we had a card and the required script we would not be able to obtain it "locally." We also want to see if the clinical trial for <a href="http://www.gwpharm.com/Epidiolex.aspx" target="_blank">Epidiolex</a> is still accepting new patients, and if they are, find out if Ethan a possible candidate. My understanding is that the trial is not accepting new patients at this time, but you never know until you try.</li>
<li>I would like to start some annual local fundraising events for the GFPD to raise money for PBD-ZSD research. The top PBD-ZSD researchers in North America and Europe have several promising ideas that they would like to pursue, but it takes money to do so, and research dollars for rare diseases are rather limited, so the GFPD and other rare disease patient/family organizations find themselves in a place where they need to raise the money needed to help find possible treatments and ultimately cures for the diseases that affect their loved ones. However, I'm going to need a team of people who will help me with this. Please pray for a team of 5 to 10 people to step up and volunteer to be part of a planning committee who can help me establish a fundraising event or two that can be successful in raising awareness and much needed financial support for research. </li>
</ul>
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<br />JPEMARSHALLhttp://www.blogger.com/profile/05244103520340968762noreply@blogger.com0