tag:blogger.com,1999:blog-30043473847341583412024-03-05T06:20:42.506-07:00Expecting the UnexpectedLife is full of surprises, some beautiful and some painful. I can't control my circumstances, but I can choose my attitude. I want to be present in the moment and embrace the lessons God is teaching me through the unexpected . . .Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.comBlogger63125tag:blogger.com,1999:blog-3004347384734158341.post-57423187577901497312020-10-09T22:15:00.001-06:002020-10-09T22:15:06.864-06:00A mystery diagnosis...AGAINA few months ago my oldest daughter woke up with numbness in her arms and legs. My concern increased when this continued for weeks. She started having increased anxiety, including panic attacks, social anxiety and sensitivity to sounds. At first I thought that the increased anxiety was probably related to the isolation due to COVID and being stuck at home. She started having symptoms that seemed a lot like OCD to me. She needed a lot of reassurance and had an excessive amount of guilt. She became worried about her weight and if she was exercising "enough" and worried if she was eating too much. Seemingly normal things that a teenager might face but this was very unlike her. Then suddenly, a few weeks ago things really escalated. She started having intense pressure in her head, in fact she thought it was her ears. We went to the ENT only to find out that her ears were fine. The next day she woke up and couldn't swallow. Food from breakfast got stuck in her throat. She also had numbness from her hands to her shoulders and from her feet to her hips. It was hard to walk, she had to really think about every step she took. Her hands were constantly trembling, so much that she couldn't hold a pencil to write or draw. When she told me her vision was also blurry I took her straight to the ER. <div><br /></div><div>Not surprising to me the ER completely dismissed us. They were not even concerned about the food stuck in her throat and said they weren't really sure what was wrong but "it was probably due to stress." They sent us home. Three days later she had an endoscopy that showed she was getting food stuck in her throat and that her swallow was very weak. The GI doctor we saw mentioned this was strange because usually you don't just loose swallow function overnight. We had an endoscopy later in the weak and I was grateful that it was normal and she has no disease in her stomach that was visible. We did an MRI of her head and spine to rule out MS and cancer. Everything came back normal, this was great news of course, but didn't explain what was going on with my daughter.</div><div><br /></div><div>She went from being a 4.0 AP student to struggling to process information, to not being able to remember things that she's always known. The things that have always come easy to her are now extremely difficult. The things that she's always loved and is extremely talented at: drawing and writing and being creative--she couldn't do at all. She wasn't able to read because she couldn't process written information. She needed to have the captions on the TV so that she could try to read and listen to understand movies. Any sound especially an unexpected one, like a pan dropped on the floor or the dog barking sent her into an instant panic. </div><div><br /></div><div>The past seven months have been very trying for her and I. It has been so difficult to watch her struggle. At one point she became very sad and told me that she is worried all her friends will go to college and she will be left behind because she cannot "think" anymore. Honestly, she has shown such resilience through all of this and she has worked so hard to keep her hopes up with all that she is going through. I honestly cannot imagine what it would be like to loose skills that I take for granted like reading and writing. I cannot imagine as a teenager, having to stop school (which she absolutely loves learning) because my brain would not allow me to process new information.</div><div><br /></div><div>Just a week ago we finally sat down and spoke with the immunologist and he explained that she has PANS. Basically her brain is on fire. Instead of her immune system attacking a virus, it is attacking her brain. PANS stands for Pediatric Autoimmune Neuropsychiatric Syndrome. It is unknown what triggers PANS, but it is typically set of by metabolic issues, infections, or other inflammatory processes. </div><div><br /></div><div>Thankfully we have a great team of Doctors and my past experience with my other children has taught me what a huge role nutrition plays in healing the gut and body. We have started the AIP diet, antivirals and antibiotics and are already seeing some improvements. I hope that we have caught things early and with the proper treatment we will get our daughter to a place were she can attempt to be in school again. I think that is the most difficult part, this is her Junior year and she was learning to drive before all this began. </div><div><br /></div><div>I hope that sharing our PANS story will help others identify symptoms sooner so that you can get the quickest diagnosis and support for your child. Please reach out to me if you have any questions or need support finding a provider who can help treat your child. </div>Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-1958705394221059402019-02-02T14:23:00.002-07:002019-02-03T16:35:03.874-07:00Why Jujitsu Made Me Cry<div dir="ltr" style="text-align: left;" trbidi="on">
I always wanted to excel in sports. My Dad's job relocated us to a small town when I was a Sophomore in High School. Being that no one had moved to this isolated town in over a decade; I was the "New Girl" for the entirety of my High School career. I joined the Volley Ball team in an effort to connect with others. I showed up every day for practice and worked hard to prove myself. Yet the coach never played me. I was too respectful to ask him why. I figured he would put me in eventually but the entire season went by as I sat on the bench. I never missed a practice and I gave it my all through the whole season. Determined to use the same drive and passion that I would have applied to the sport; I focused my efforts on cheering on my team members. I decided that if my coach was being unkind by keeping me on the bench, then I would be the most kind, the most cheerful, the most positive person on that team. And so I worked at it. <br />
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The coach never said anything to me that whole season, good or bad. He never told me why he didn't put me in the game. Even though I never quit, the fact that he never played me, left a scar. </div>
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From then on, I never believed I was cut out to play sports. </div>
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At thirty-nine years of age I began<span style="background-color: white;"> </span><span style="background-color: #f3f3f3;">Taekwondo in order</span><span style="background-color: white;"> to </span>"support my kids." I didn't have any goals or expectations attached to it. Then something strange happened. Since the sport continuously challenges you to perfect moves and to work toward goals, I fell in love with it. Taekwondo became mine. Incrementally, I made improvements. Things that were exceptionally difficult for me in the beginning became easier over time. </div>
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Enter Jujitsu. I never would have even attempted something like this if I hadn't made the progress that I did in Taekwondo. I saw Jujitsu as a new challenge. A way to push myself a little bit further, harder and past my physical boundaries. Today when we were working the drills I started crying. It would have been easy to blame the tears on the pressure I was feeling from being locked in an arm bar. I would have been lying. I got into a position where I felt trapped. I could hear everyone telling me what to do, but I couldn't materialize it. I was pulling away, they were telling me to lean in. It felt like I should try to escape the grip of my opponent, but I needed to get even closer to her. </div>
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Sometimes life puts you in an arm bar. We get pulled into something hard. The pressure of your situation is so uncomfortable, it's pulling you down and you just want to get away. You want the pain, the difficulty, and the struggle to just go away. So you fight against it. Yet the more you fight it, the more it pulls you in and capitalizes on your weakness. </div>
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When I resist what God is doing in my life: when I fight against Him, when I focus so much on the "Why", I forget the Who. I want answers and I want them now. I research, work and struggle to try to fix things on my own. I try to control by pulling in my direction against the pressure, but God has me locked down in an arm bar and I'm either going with Him or ripping off my arm. In my quest to know "Why," I forget to lean into Who God is. He loves me and He ultimately has my best interest in mind. He is near me and walking with me through whatever the struggle is. </div>
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When my opponent let up and released me the emotions instantly overwhelmed me. It took everything for me to not just start sobbing. Here is what was really going on. I was telling myself, "I can't do this. I'm not good enough. I'm not an athlete, I've never been one and I never will be. I'm gonna get killed out there." </div>
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Then my coach made me do the same drill again. This time, he had me lean in to it. So I did, I went with the pull instead of against it. I pushed hard into the pressure and forced myself into it rather than fighting against it. Do you know what happened? I got out of the arm bar, but it took me driving hard into it.</div>
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Sometimes being strong isn't what God is looking for. He's looking for us to lean into our weakness and into our fears. He wants us to stop resisting what He is trying to do in our lives, and stop fighting against Him. I know it's natural to pull away and ask "Why? Why are you allowing this into my life?" "Why won't you just answer my prayers?" Yet when you lean into the struggle, you get closer to Him; you feel Him next to you, and then He can guide you where you need to go. </div>
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I could have lied to my peers today and told them that my arm just hurt. But it's more than that. Even though it's hard, being vulnerable with my team, my friends, and my peers, is the start of letting go of what's holding me back. This mental hang up that I have to be perfect at everything is holding me back. I've been breaking it down, but it pops up and try to suck me back in, as it did today. "I'm not good enough," taunts me when I struggle. Does it do the same to you? When we verbalize this out loud and we are vulnerable with each other, then the limiting words loose their power over us. If when we feel this way and we say it, then there's no longer shame in it, because it's normalized. </div>
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It's time to overcome friends. We do this together, by being vulnerable, by leaning in to the hardships, and by believing in our true identity. </div>
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When I was locked in that hold, it all came down to the fact that I still do not really BELIEVE I am an athlete. Even though I've worked hard and I am now physically fit and strong; I don't live in light of how far I have come. In my mind, I'm still stuck on the bench, not accepting that this strong woman is the real me. </div>
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In the same way, when the struggles of life are pulling me down; When they threaten to destroy me, do I remember WHO I am? </div>
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<b>I am a child of the LIVING GOD. </b></div>
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What if we begin to live in the power of that statement? What would change?</div>
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When everything else seems out of control, I have to remember WHO. WHO He is and WHO I am. </div>
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God isn't finished with me yet and He's not finished with you. Thankfully, He's given us a lifetime to learn how to lean into Him. </div>
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<i><b>"For momentary, light affliction is producing for us an eternal weight of glory, far beyond all comparison." 2 Corinthians 4:17</b></i></div>
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-80471521997211151662018-10-31T23:23:00.002-06:002018-11-01T00:13:57.656-06:00A Dark Tunnel, Bricks, and A New Story--Navigating Adversity, Vulnerabilty and Resilience <div dir="ltr" style="text-align: left;" trbidi="on">
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Have you ever been lost in a dark tunnel without a flashlight? You can't see behind you or in front of you. You feel with your hands stretched out, each step a risk, as you have no idea what lies ahead. It's too dark to turn back, you know you have to keep moving forward but you don't know where you are going or where this darkness leads. It is so dark you can feel it, like a blanket you are clocked in it, so thick you can't remember what life was like before the lights went out. This is the darkness of PANDAS, when the lights go out and the child you loved disappeared. It is especially dark in the beginning when the diagnosis is unclear or help is scarce or unavailable. You yell into the tunnel, you scream and your voice echo's against the walls; a chilling reminder that you are here alone, navigating through this darkness untapped and without a guide. There were times that I navigated this tunnel on my knees, dragging myself through the muck, clinging to the hope that maybe I would find my way out. I was to afraid to even stand, lest I fall and never get up again, I was hanging on by a thread. </div>
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Yet, what if I told you that on the other side there was light and laughter and joy. That beyond the tunnel is the REST OF YOUR LIFE, for you and your child. I know you can't see it, but it's still there waiting for you. What if I told you that the darkness was just a curtain and that you were literally just a few feet away from the exit. I wish I could just reach through and pull you out onto this side of hope; however, the only way to the other side of the tunnel is to walk through the darkness. I hope that even as a whisper my voice will reach into the darkness and that when you hear the proclamation of hope you will keep walking towards the sound of my voice. </div>
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When I was in the tunnel, I couldn't picture anything more than what was in front of me, I couldn't even see my own hand. There were moments that I imagined giving up, just laying down and just dying right there on the floor. Some days it was just hard to even breath, the grief was so heavy. I couldn't write about it then, because it was so painful, and to be honest, I didn't have the strength to believe that things could ever change.</div>
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On the other side of the tunnel my son actually still has struggles and things are not 100 percent, however I am the one who has truly changed. I have walked through something that has transformed me and I will never be the same. Had you talked to me a few years ago, I would not have predicted this outcome. At the time, I would not have imagined that this experience would improve me, in fact, I felt it brought out the very worst in me. I want to share this with you, because I know you think you are the only one who is feeling these things, but that simply isn't true. When my son was at his sickest, he was not redirectable or even reachable. He would literally scream for hours and hours, he would throw things, break things, punch me, curse. I was afraid for my other children so I sent them to my parents house. I know now that his brain was on fire and this wasn't his fault but at the time, I didn't know what was going on. I became reactive to him, I developed PTSD, but I didn't realize that was what I was experiencing. When he would start screaming, I would instantly go into fight or flight: it became an automatic response. I would scream back at him and I did not respond in a very productive way for either of us. This of course only lead to more and more grief on my part. I knew he was struggling but I was struggling too. I was so scared, for him and for our entire family. The guilt I had was as thick as the darkness, and like a brick I added it to my backpack, which I drug through the tunnel of darkness, making it even more difficult to get to the other side. I carried these burdens alone for the most part; it's hard enough to have a child who is struggling immensely, but how do you talk about your failings as a parent? How do you even face such doubt as your own ability to cope? How do you navigate feelings of inadequacy? It was beyond unbearable. Could I tell people, there are days that I feel like I hate my own child? Could I tell people that I was full of anger, guilt and despair and that I was struggling every day to get through? I felt like I was dying on the inside, but I couldn't tell anyone because I was so ashamed of myself. I was so ashamed of the way that I felt about my son. I was ashamed of the things that I said to him in anger and in reaction to the illness that stole him from me. So I hid these bricks in my backpack--the bricks of guilt, the bricks of failure, the bricks of shame and I told myself I was a failure as a mother, and I cried in the darkness alone. </div>
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What if I told you, that there is a way to actually turn on the light in this tunnel. It may not actually bring you out of it, you may still have to walk through it, because healing for us has not been linear, it has been up and down and everything in between, as it often is with PANDAS. Here is how you turn on the light. Whether your child has PANDAS or some other chronic illness or is just a challenging kid; We have to normalize shame. We have to stop acting like it is unusual to be struggling as parents dealing with children who are chronically ill, with an illness that is debilitating at times. We have to be honest about our humanness, and we have to be kind to ourselves. For the past four years I lied to myself, adding brick upon brick of shame into my backpack. It wasn't until I opened the pack and pulled out the bricks and started to name them, that I was finally free of them. Where do you tell yourself "I am not enough?" When you bring the bricks out that are weighing you down, and you identify the lies you are telling yourself, then you will be free of them and you will be able to walk through this tunnel a little lighter. I almost lost myself in that tunnel, I gave everything I had and more, to try to heal my son, mean while dragging my backpack and dragging my unnourished, emaciated self through the muck. What I mean is, when we are feeding ourselves these lies of "shame" and more so, the lie that "I am the only Mom that feels this way", the lie that "I am not a good enough Mom, or patient enough Mom" or whatever you say to yourself. When we feed ourselves these lies we are depriving ourselves of the nourishment we need to face the darkness and get through the tunnel. Whatever we set our mind on, will grow and expand. The more I berated myself, tore myself down, envisioned a future that was hopeless for both myself and my child--the more the darkness grew, until it threatened to consume me. This is such a slippery slope, and you fall into it without realizing it. </div>
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Believe me I know where you are walking, I have been there and barely lived to tell about it. I can't empty your back pack, you have to do it for yourself. So tell me, what are the bricks you are caring around? Will you bring them out into the light? The more we Mom's bring out the shame we are feeling, the less power it has over us. The second thing I would challenge you to do, is to attempt to write a different ending to your story. I'm going to just be honest, the story I was telling myself was, "my son is probably going to grow up to be a criminal." This isn't a joke people, this is where I was in my mind, because yes, it really was that bad in our home every day for a long time and I was drowning in sorrow. I have to bring this out into the light, least any mother out there think she is alone. I just wont have it, I wont let this world loose a beautiful mother to this darkness or to the lies that threaten to beat us down and tell us we are worthless. It simply isn't true. So, I ask you, what is a story that you could write for yourself that is better than the one you are living now? I know you can't feel it right now, but what if it could be true? Could you write your story of hope the way you want it to turn out, and then keep it by your bed and read it to yourself every night? It will speak into your darkness and give you hope, and each day you will believe a little more of it to be true.</div>
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This is my story:<br />
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There once was a beautiful boy, he struggled with many things and then he got very sick. He was still the same beautiful boy but he was hidden from his family and transformed into something that was not the likeness of himself. He appeared so different on the outside that after a time it was hard for even his parents to remember the beautiful boy that he was. There was a shell around it him, it seemed as though it was him but there was only a trace of who he used to be in the dim light of his eyes. His mother loved this boy more than her own life, she fought for him every day. She made many mistakes as all mothers do, she fell hard on her face but like a warrior she got up and she fought for him. With blood a sweat and tears she fought for him, on her knees and with heartfelt tears she begged the God that she loved to save her son and save her family. As God often does, He didn't answer immediately, He was surely at work but He was doing more than just working on the boy, He was working in the heart of the mother, whom He truly loved and knew that she was more than she realized. He had hopes and dreams and plans for the boy and his mother that were beyond either of their understanding. Yet sometimes hopes and dreams are grown in the soils of hardships and pain. God had a plan to use this mother and the boy to bring hope and light to others who would walk a similar path. The mother clung to her faith if only by a thread and others prayed for her when she didn't have the strength to pray for herself. The mother woke up one day as if from a daze and realized that she could not properly take care of the boy if she didn't take care of herself. She realized she was weak and thirsty and tired and worn from the years of trial. It was so hard to change, as she had always put the boy first, but she realized that if she continued this way, she wouldn't be strong enough to care for the boy so she set off to take care of herself first. She first admitted she couldn't do everything for him, she needed help so she asked for it. She enlisted others to help her. She started to talk about her struggles and bring her pain into the light. The more the light shown on her the more she grew and strength entered her body and feed her soul. She started to make herself a priority, she feed herself with nourishing food and exercise to strengthen her mind and body. She took care to sleep and she fed her mind with words of truth and empowerment. She threw off the sack of heavy bricks and lies that kept her from standing up tall. Something strange happened. She started to see the boy under the mask that kept him hidden, she remember the child he was and she spoke truth into his life. She prayed over him when he was asleep and even though he was still hidden from her she believed and started to hope that he would get better. She refused to entertain the thoughts that added weight to her backpack, she threw them off along with the lies of her inadequacy and she started to walk with her head held high. Even when he wasn't well, she became well, because she knew that his healing depended on her caring first for herself. She set her heart towards the belief that he would be fully healed and she told herself this even when it wasn't true yet. </div>
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This mother grew and she thrived and she lived to tell her story to any who would hear it. She didn't have the perfect boy, and she wasn't the perfect mother. But she was the best mother she could be. Her beautiful boy came back to her, and even when he struggles now, she doesn't react or fall back into fear that he will be taken again, for she knows he is always her beautiful boy, and she knows she is the best mother for him. She has come to be this mother as she grew out of the soil of adversity, nothing can steal this from her, she has lived to tell the story and so will you. </div>
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This is an amazing video by Brene Brown, it really encouraged me and inspired this post: <a href="https://www.youtube.com/watch?v=iCvmsMzlF7o">https://www.youtube.com/watch?v=iCvmsMzlF7o</a></div>
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-43283471687695208582018-10-26T16:28:00.002-06:002018-10-31T21:40:53.045-06:00First Infusion <div dir="ltr" style="text-align: left;" trbidi="on">
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It’s been a long time since I’ve posted. Life has a way of getting in the way of blogging and honestly things just have been so up and down that sometimes it’s hard to write about things in fear that a good day might switch to a bad day right after. Since it's been a while, let me start from the beginning for those just joining in and to help give hope to those of you in the midst of this process. </div>
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It was the first day of Christmas Break that our world turned upside down. We picked our son up from school, he had just completed the first semester of second grade. It was like a bad dream, just as soon as Storm got in the car he then bolted out the door into oncoming traffic. I remember all the smiling families picking up their kids after the class holiday parties. It seemed surreal, as I ran as fast as I could past them all to tackle my son on the school yard, before he ran into the street. He was screaming something about wanting to die and I literally had to carry him kicking and screaming, to the car, all the way across the lot in front of countless onlookers. Once in the car, I held him the entire way home while my husband drove. My son was spitting on me and clawing at the door like a wild animal trying to jump out of the moving vehicle. When we got home it took four adults to hold him and prevent him from self injury while he screamed for hours. If we let him go he would try to run out of the house or ram his head into the corner of sharp tables. He was completely irrational and I was terrified at what was wrong. He couldn’t be redirected or calmed. He finally cried himself to sleep. Soon after this first episode, we ended up doing the unthinkable and admitting our seven year old son to the psychiatric ward. Unfortunately he left there in worse condition than when he came, we knew something was desperately wrong but the doctors were not listening to us. Over the next two years we saw psychiatrist after psychiatrist, doctor after doctor. Every new Doctor added a new diagnosis or plausible answer: autism, bipolar, intermittent explosive disorder, OCD, severe ADHD. In the same manor the doctors continued to heap on more medications, when I explained the medications weren't helping they insisted I increase the dosages. Not only did this not relieve his symptoms, he seemed even more aggravated. The school was calling me daily saying he couldn’t focus, couldn’t sit still, and that it was like he was “crawling out of his skin.” At home he was emotionally volatile, crying continuously like a colicky baby most of the hours that he was awake. I later came to understand many of these responses were related to severe anxiety but it took me a long time to come to this understanding. He became obsessed with decorating the outside house with lights and spent literally hours daily re-arranging the decorations, needing to have things perfect. I explained this obsessive behavior to the doctors but they deemed it unimportant due to the fact that it was the holiday season and he seemed to "enjoy" the obsession for the most part. There were other times that he would sometimes just rock back and forth in a corner drooling and saying the same words over and over again. He regressed academically and this was proved with testing before and after that showed his handwriting skills had deteriorated. At the time we were beyond perplexed, we were devastated at the loss of our child and the deep isolation that his behaviors brought. There were weeks which turned into months in which we couldn’t leave the house for very long or even go to church. I eventually started homeschooling all my children because his behaviors and the trauma we were dealing with was causing all the children to struggle. I was in survival mode for at least two years straight. I gained a lot of weight, I was overwhelmed. I didn't really want to go to family gatherings because I felt so ashamed of his behaviors and overwhelmed by them, activities with a lot of people seemed to set him off so being social was difficult. Many nights I laid prostrate crying on the floor begging God to heal my son or take him from this earth because I could not foresee a life for him or for us if things continued this way. It was really that bad. I will admit that there were times that life seemed hopeless and I dabbled with the thought of if it was worth living in this hell that was our home. I share this because I know there are other mothers in this darkness and sometimes it is so thick that you could cut it with knife. It's hard to see any form of light beyond the day to day struggle to just survive, but I assure you, you are worth it, your child is worth it and you are stronger than you know; you can get through this. </div>
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When I wasn’t crying I was researching constantly. Shortly after his admission to the psych-ward he got a really bad case of croup in which I had to call the ambulance and he got inhaled epinephrine on the ride over because his throat was so tight. When we got to the ED the attending swabbed his throat and he had strep. Interestingly, 72 hours on antibiotics and steroids and my son was back! I took note of the fact that all his behaviors, tics, anxiety, anger, ADHD—everything resolved. </div>
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In the fall of 2016 we found an immunologist who drew blood work and found Storm to be immune compromised. He advised me to come back when he was symptomatic with tics and behavior issues. </div>
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Like clockwork, the symptoms came back so we returned to the immunologist. He did a throat swab </div>
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and it was positive for step. We started him on antibiotics and steroids and saw the same improved </div>
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results while he was on them. My son was diagnosed with PANDAS which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection. </div>
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I was so relieved to finally have a diagnosis that made sense and that gave us the hope of treating and recovering our son. We continued with the immunologist and found a PANDAS specialist and began using many modalities to decrease the overall inflammation in his body. I may do a separate post on the treatments we did but we used a variety of supplements as he was found to be deficient in many vitamins and minerals. We also had his brothers' and his tonsils and adenoids removed last March as his younger brother developed tics and OCD as well. We have seen many improvements in Storm over the past two years. </div>
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The worst time for him always seems to be fall and winter months which makes sense in light of his immune deficiency. About a month ago he started struggling again, nothing like the first episode all those years ago but enough to heighten my concern. I brought him back into the immunologist and he was started on a “crisis protocol” which includes antibiotics and anti-inflammatory medications and antihistamines. These things helped as they usually do but his immune counts are even lower than before and the immunologist drew a lab that is specific for brain inflammation and it was elevated. Who imagined I would ever be relieved to hear that my son has inflammation in his brain? However, after all we’ve been through, it confirms again what I have known in my heart all along, my son’s brain is on fire. He’s not a bad kid, he’s not mentally ill, he’s very sick and he’s doing the best he can in spite of all he has suffered and struggled with. When he is sick he doesn't get fevers, his body doesn't attack the infection, it attacks his brain. He will act impulsively, struggle to focus, make lots of noises, vocalizations and have lots of sensory issues. He tends to get overly hyper, one time when he was sick with a fever of 102 I didn't even know he was sick because he was bouncing off the wall, bouncing into everyone and everything and jumping and spinning all over the place. It wasn't until I saw him shivering that I took his temperature and realized he was sick. When he's really unwell he is so full of anxiety and so rigid in his thinking that he will scream and curse and this is the hardest for me because we do not curse in our home and I did not raise him this way. He will appear defiant and disrespectful, but this is not his true self. For so many years I was so afraid of the judgement of others who do not understand. I allowed these lies to penetrate my heart and define both him and me. I felt worthless and I felt I was a failure for not being able to "discipline him," or control my son. I felt ashamed and embarrassed. Of course I felt grief because I wanted a boy who could just be a boy and not be hurting his friendships with behaviors that really cause the other children to dislike him. How can I blame them, no one wants to be spit on, no one wants to be pushed or bumped into or have someone make screeching noises in their faces. Believe me, when he is like this even I struggle to tolerate it. So many nights he has cried in hindsight, saying "I just want to be good, it's too hard to be good." I have heard other mother's of PANDAS kids say their children say the same things. It took a long time for me to separate the actions from the boy. Yet I know this is not who he truly is. Deep inside he is a very deeply spiritual child, he loves God, he loves his family, he is very driven and has an amazing work ethic, he is kind and very in tune with the feelings of others, he is not quick to judge others and he is quick to forgive. The Jekyll and Hyde effect still happens but not as often as in the past. In fact, he had almost ten good months with very minor flares in symptoms until recently. Now I know what is really happening behind these behaviors and I am able to have more compassion for him and myself. Of course I am continuously learning more patience, I will not say that I have mastered this aspect of character. </div>
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And here is where I have a quick word on mental health in general. I can’t tell you how often I see posts about changing the stigmatism of mental health, yet there is so much work to be done. I appreciate so much when people come forward on social media, and in other ways, and are vulnerable about their mental health struggles. This is shining light on the fact that many people struggle and gets us away from the mind-set that people who struggle with mental health are “crazy.” That being said we are still far from solving the crisis of mental health in this country. There are not enough resources for families, and there is very little support. What support that is available is often very expensive and there are long waits for services and tons of red tape to access it. As a result, parents spend hundreds of thousands of their own dollars on therapy and treatments for their children. These parents are hurting, they are doing everything they can to help their children, but many doctors are not willing to think outside of the box or research ways to help. This is not an attack on our pediatricians who are likely overworked, under paid and under appreciated. However, we need doctors to understand the immense amount of suffering these families endure by not getting diagnosed in a proper and timely way. The need to recognize that there is a lot of trauma involved in not being heard or validated when you have suddenly lost your child to the abductor that PANDAS is. Some claim doctors are afraid of the possible overuse of antibiotics, however the next treatment offered to my seven year old was Lithium. I assure you the side effects of Lithium are worse then antibiotics for a short time. More so, the consequences of misdiagnosing a child with a life long mental illness without exploring the possibilities of immune compromise, thyroid disease, autoimmune disorders, inflammation, gut health or even sub-optimal physical health is negligent. It's time to recognize that we are whole beings and the brain and mind are not separate from the body. Science has told us that the gut and brain are connected and that gut health plays a huge part in physical health. However, I see kids quickly diagnosed with psychiatric and neurological issues like Tourettes, Autism and ADHD without examining the causes behind these issues. It's easier to give someone a pill than investigate the route cause, or look at their diet, their sleeping patterns or how much time they are spending indoors playing video games rather than outside in nature. Not just PANDAS, but mental health issues in our children are becoming an epidemic and I can't stand by and be quiet. We can improve our health and the health of our children, but it's not going to be a quick fix. Again, don't misunderstand me, there is a place for medications but I think in children who are developing we need to look at the whole person, we need to explore safer alternatives before we hand out medications like candy. </div>
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As a society we are far from being tolerant, and I have experienced this first hand. It so much easier for onlookers to judge than it is it is to examine your own heart, step into the shoes of a hurting family, or ask how can I help? Like a child with Autism, PANDAS is not visible from the outside, the child looks and may seem to be developing normally to onlookers. It is easy to see a child who is screaming or misbehaving or being impulsive and blame him for being a terrible kid or blame the parents for not disciplining their child. There will still be people who believe that a kid with PANDAS can just be “reasoned with,” but those people have never lived with a child in a severe flare-up. I personally, will never see a "misbehaving child" the same again. I usually ask myself, what is this child going through? What do they need? What is their behavior trying to say? It is a new way of thinking that involves throwing off your pre-conceived notions and personal judgments and realizing that kids that are acting out are likely hurting or trying to communicate something you may not understand. What about the epidemic that our teens are facing with depression and anxiety, especially our teenage boys? Is it any wonder after years of being "misfits" that they commit suicide or such atrocities as school shootings? What are you and I going to do to change these statistics? Do you think that more drugs and therapy will fix these issues? That will never be enough to overcome years of being told you aren't good enough, that you are broken, that you aren't smart, that you can't behave or fit in. It is the responsibility of each one of us to change this through our actions: By teaching our typical children that there are children that learn differently and process information and even sounds differently. By teaching our children to be kind and to put themselves in the shoes of others before they judge. By teaching our children to speak up before they lash out. I don't think that my son's bad behaviors should be ignored or "tolerated." I want him to learn the correct social ways to behave and I want him to respect myself and his peers. I am grieved when he is struggling and I feel bad that your child had to deal with his annoying habits, but he still needs to go to school and learn and practice or he will never learn the "right way to behave. Teach your child to speak up for herself or himself but to be kind. They might say something like "when you make raspberry's in my face it makes me upset, can you do that somewhere else or do something else if you need to make noises?" It would be so amazing if we could teach our children to ask for what they need but to also be kind. Rather than assuming their peers are mean or insensitive, teach your children to imagine that their peers might appear to be misbehaving because they are stimming or having tics or sensory processing issues. Further, the child who seems to be a bully might be hurting and might have learned that the only thing he or she is good at is getting in trouble. Also, you never know what one word of encouragement can do, or how believing the best about someone who is struggling can empower them. The teachers who have built my son up, the Taekwondo instructors who have pointed out his strengths, the adults who have spoken truth into his life--they have had the greatest impact as he strives to meet their expectations against all odds. </div>
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This is no easy feat, to see the good in those who drive us crazy sometimes. I am working through my own humanness, and the ways I personally found myself ashamed of my son, and how that affected my reactions to him and my relationship with him for a long time. I still worry about what other people think of me but I am working on this. That being said, we have come so far and I have incredible compassion for those of you just beginning this journey and I want you to know that you are not alone. I want you to know that the child that you are dealing with really is sick and this disease and these behaviors do not define them, nor do they reflect on you as a parent. This is not the end of your story.</div>
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So that brings me finally to today. We are doing our first IVIG infusion. IVIG or immunoglobulin is a blood plasma product taken by many donors and infused into his body to give him antibodies to fight infections that he isn’t able to fight due to his impaired immune system. It is the immunologist’s hope that an improved immune system will help reduce and heal the remaining PANDAS symptoms. I waited a long time to try this therapy because I was very fearful of the side effects which can included anaphylaxis, severe headaches, vomiting and nausea and rarely aseptic meningitis. I’ve read some kids have a really bad PANDAS flare and regression following the infusions, every child is different. God opened the door and we are waking through it today. I will try to post an update for those of you who are yet to do this so you can know what our experience was. We started pre-treating him with the antihistamine Zyrtec a week ago and will continue this indefinitely. Per the immunologists recommendations we added in Zantac 75 mgs three days before and will continue three days after. We have been drinking electrolyte water for months, I get one that is natural called <a href="https://www.amazon.com/Ultima-Replenisher-Electrolyte-Pomegrante-Gluten-Free/dp/B01IIGNPK4?crid=K57MPYGMVMKE&keywords=ultima%2Breplenisher&qid=1540753159&sprefix=ultim%2Caps%2C267&sr=8-6&ref=sr_1_6&th=1">Ultima Replenisher </a>on Amazon which is free of dyes and added sugar. It is advised to drink electrolytes daily for a few days before and really be hydrated and continue to push fluids for several days following infusion, you will know you are well hydrated if your urine is light in color. Also my son tends to get headaches and reacts negatively to many medications so he is also getting Motrin before and after the infusion and Benadryl before the infusion to prevent allergic reaction. So far we are almost three hours into the infusion with no adverse reactions. I am told that the side effects usually peak on the third day so I will update our experience. </div>
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Thank you to all of you who have upheld us with your prayers and who have encouraged and supported us through the hardest times. We have learned so much and we are continuing to learn and grow through this trial. I can tell you that I am not the same person that I was a few years ago. As I mentioned I really stopped taking care of myself and it wasn't until a year ago that I realized that I really did have caregiver fatigue. It is pretty hard to come through this journey unscathed, but there are things you can do to preserve your sanity and I think even thrive, which I never would have believed before. I will try to post on this next, as we Mom's really need to stick together and walk through this as a community. Here is the link to the <a href="https://www.facebook.com/groups/pandasparents/">PANDAS facebook group</a> for those of you who are really in need of support right now. I'm back now and will try to keep this site active, be patient with me as I try to respond to your emails. Also, stay posted for a new website which I will be launching in the upcoming months. Keep fighting Mamma bears, you've got this!</div>
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-70870086458916138222017-02-11T08:25:00.001-07:002017-02-11T08:25:15.251-07:00Mommy that's so beautiful<div dir="ltr" style="text-align: left;" trbidi="on">
We woke to a most interesting phenomena of weather. Rain that froze on its way down, so that my entire car was crystallized in it's own ice-like plastic wrap. There was no sign of snow. My husband slipped on the driveway as he went out to warm up the car--a clear sheet of ice covered the road that was not visible to the human eye. <br />
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Later that morning Storm, his brother Mouse, and I were on our way driving towards the mountains. Evergreen trees were on both sides of the road, I heard Storm gasp in the back seat. "Mommy, Mommy look!," with child-like wonder he exclaimed, "Mommy that's so beautiful." Just as my car had been encased in ice earlier that morning, the evergreen trees and all the trees of the forest around us, were in encased in a glass like ice display. The trees were crystallized, and as we drove to our destination, they glittered in the afternoon sunlight, it was truly majestic. </div>
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Storm was filled with awe and wonder and so was I. "Look at what God did!" He said. And in my heart the verse "The whole earth is filled with His Glory," came to mind as we observed His handiwork. The interesting part of the crystallized trees was that since the rain had been blowing in one direction, only one side of the trees were covered in icicles. The other side of the trees were completely clean. Right down the middle, as if they had been cut in half and spared from the chill as well as the beauty.<br />
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I noticed something. The icy side was more stunning, it glistened in the sun. Isn't this too how our trials are in life. Oh how painful it is when the icy rain is beating down upon us. "When will it end, why does it hurt so much, why is God allowing this to happen! What is the point" I shout these things to a God that I know is listening, but in the midst of it, He feels so distant.<br />
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It isn't until the sun rises and shines upon us that the Light of His Glory reflects the beauty of His handiwork. Do I shimmer with His radiance? Do I reflect His magnificence? Most often the answer is no. Most often I beg Him to remove the burning pain of the ice. <br />
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This was a fleeting serene moment, when the ice covered just the one side of the trees. In order to display such glory, the conditions had to be just right; cold enough to hold the branches in an ice cocoon, bright enough to glisten, but not warm enough to melt the scene away.<br />
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This is the moment I am in right now. I can feel it. You might be in this moment too. Oh how it burns, oh how the weight of it bears down on us. I am frozen in this moment and how I wish to escape it. From inside the ice I can't see what God is doing! But I hear God begging me to hold on just a bit longer. In all His radiance, He will shine on me and reflect His glory. He will sparkle over me. He will display His beauty through me, if only I will muster up the courage to wait for Him. <br />
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This is what He is speaking to me in this trial, as I continue the day by day with my precious son, my son whom He gave me, My son whom He loves more than I do. My son who is unique and challenging and oh stretching me beyond what I am capable of handling. Could it be that He is preparing me for something I can't imagine? Could He use what feels like death and darkness, to shine light and life to others? This is my moment. Only in the perfect conditions could the rain freeze and glisten in the sun. It had to be cold enough to freeze, but warm enough to shimmer the radiance of the sun, too much sun and it would melt completely. <br />
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Sometimes in the midst of this trial I feel the sting of it and feel God is abandoning me. Why is He allowing my family and I to suffer? Why doesn't He rescue us now? I mistake the cold I feel around me, like the encapsulated branch, as a sign He has forsaken me. I can't feel the warmth of His presence through the ice. I can't see His purpose or what He is doing, I can't see His glory. In these conditions I must just be the branch. I can't do anything, I am frozen. But I have a choice. I can become bitter and angry and spiteful or I can submit, I can wait. Oh how hard it is to wait! <br />
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Only a few hours later on our way back home Storm surveyed the dry branches "Mommy, it's gone." Indeed, the timberland we surveyed paled in comparison to the glistening forest that left us awestruck only hours before. The ice was gone and had we not seen it with our own eyes, it would have been as if the glorious display had never occurred. But we did see it, and we cherished the beauty of it in our hearts.<br />
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As you and I wait on the Lord for whatever we wait for, let us bear His glory, remember that this is only a moment. We can think of it as a moment of pain, of hardship, or even as the ice surrounds us and stings and threatens to weigh down our branches, and kill us--we can remember that this is only a moment in eternity. This is our moment to reflect His glory. His light will come over that hill and before we know it He will shine upon us in all His radiance, the ice will melt and we will be fully in His presence. <br />
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<span class="bible-item-title-wrap"><a class="bible-item-title" href="https://www.biblegateway.com/passage/?search=Isaiah+40%3A31&version=NIV">Isaiah 40:31</a></span><br />
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but <b>those</b> <b>who</b> hope in <b>the</b> <span class="small-caps"><b>Lord</b></span> will renew <b>the</b>ir strength. <b>The</b>y will soar <b>on</b> wings like eagles; <b>the</b>y will run and not grow weary, <b>the</b>y will walk and not be faint. </div>
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-83716483558739263622017-01-10T22:46:00.001-07:002017-01-10T22:54:21.290-07:00A Typical Day<div dir="ltr" style="text-align: left;" trbidi="on">
Today I woke up to a quiet house, it was a little nerve wracking. My son walked into my room, actual walked and didn't run. He came to my bed and said "good morning Mommy, can we cuddle?" He didn't hit me or scream. He watched some cartoons while I made breakfast and then he ate his breakfast, and he ate some more, and he didn't start screaming and crying or say that it was too soggy or made him gag. He played with his brother. I heard them laughing, there wasn't any fighting or hitting or crying. Later, I went upstairs, it was too quiet, I was worried that something was wrong. Storm and his brother were "making a movie" together. Later that day I heard Storm, it was his normal voice, he was having a conversation with his sister, "Yes, I'd love to color with you." And he sat down and they drew pictures together and walked around hand in hand--these two are so close when he is doing well. There was no screeching or screaming, or repeating words over and over. Later today all the kids were out side jumping on the trampoline, their laughter rang in the air. It was the laughter of children, playing outside in the warm sun and just being free to have fun and enjoy each other. Storm wasn't trying to control who jumped and when, or anxious about having everything just so--he was free to be a brother and to be a kid and have simple, typical fun. This is how it should be every day, this should be a typical day, but this has become the rarest of days in our home. This was day was like a gift, much like a sunny 60 degree day in the beginning of January; It was a sweet surprise and really unexpected. My son hugged me over and over today, he kept telling me every few minutes "Mommy, I love you so much." "Mommy, I love you with all my heart." "Mommy you are the best Mommy." I close my eyes tonight, wondering if he was trying to say as much as he could, while he was with me, in case tomorrow I wake up to someone else. I cherished every part of this day, I drank it in, I soaked in the sun. I felt happy for the first time, in a very long time. I felt hopeful, I know my son is here, I pray so hard that he will stay, that we are on to something--that he could be healed so we can always have these days or at least more of them. How I miss this boy so much. It was so hard to say goodnight, I hugged him so many times today and also told him how much I loved him. I told him, do you remember how hard it's been these past few weeks? He lowered his head and turned his eyes from me "Yes, Mommy." "You know it's not your fault right? You know that strep throat is making you sick inside right? We are giving you medicine now to get rid of it, it's going to help you. You know I love you and I'm not upset and it wasn't your fault." "Yes Mommy. I love you." I don't want this day to end. This is the best day we've had in 4 months. It was healing for us all. I'm excited, but scared, have we finally found a way to help him? With all my heart I hope so. <br />
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We recently found out that our son has PANDAS, after four years of misdiagnosis we are finally treating him correctly. I will continue to update my site with all that I am learning so that we can help others who are fighting for their children's lives. </div>
Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com1tag:blogger.com,1999:blog-3004347384734158341.post-56129385955250134102016-08-27T18:34:00.003-06:002016-08-28T10:02:12.447-06:00Stay...<div dir="ltr" style="text-align: left;" trbidi="on">
We had a some good moments with Storm a few weeks ago, and those moments are always bitter- sweet. It's honestly been years since we've seen him functioning that well, we had almost a week of just happy moments with the light in his eyes. It was like he was back with us, but it didn't last very long. This is the story I've been re-telling the Dr's for years, like a broken record--but we are still far from being heard. Explaining how my son has periods of functioning for a few days and then switches to an intense drive to decorate, with a need to buy things, he starts talking very fast and has so many ideas that he is overwhelmed by them at times. This then switches to him becoming extremely irritable, angry, unreachable and sometimes dangerous when he is in a rage. It's hard to talk about these things, but it's even harder to live through them every day. It's akin to losing your child over and over again, without knowing how or if we will ever be able to help him. This poem expresses what it is like loving a child who has a mental illness, what it's like to live through the storm, over and over. We are in the midst of it ...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTzbK7ok9Hg1krzns7LA-TgtyzcFnO_Ub4as5L2UND0mXl2Pi3I1Ob9wp7Pl4DVa_9EfoFhmwCz1xWh8W4f1LJoupQ_-4ee9OacU5ngNpG7wZ0cS-TB27w2ZQ83zLvREjuv4PBuOMLL3c/s1600/2014+Junge+Family+Choice+00023.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTzbK7ok9Hg1krzns7LA-TgtyzcFnO_Ub4as5L2UND0mXl2Pi3I1Ob9wp7Pl4DVa_9EfoFhmwCz1xWh8W4f1LJoupQ_-4ee9OacU5ngNpG7wZ0cS-TB27w2ZQ83zLvREjuv4PBuOMLL3c/s640/2014+Junge+Family+Choice+00023.jpg" width="640" /></a></div>
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<strong><u>Stay</u></strong></div>
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When time slows down and the autumn leaves sway, </div>
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Like the changing of seasons, my heart aches, "please stay."</div>
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In your deep gentle eyes, like a tide near the shore, </div>
I ask you to linger, just a little bit more<br />
Like the breeze brushing past me, a kite ready to soar<br />
I wish to be with you, the way it was before<br />
For a moment I held you, I saw you were there<br />
You knew me, you saw me, inside there somewhere<br />
Briefly we laughed, we cried, we embraced<br />
I desperately wanted to keep you,<br />
To stay in this place<br />
If I could capture this moment and hold it in time,<br />
I would stay here forever and you would be mine<br />
The love that I love you with, binds me in chains<br />
While I helplessly watch you, destroy what remains<br />
My gentle sweet boy, with the sweet humble eyes,<br />
Taken away to a place we can't find<br />
A place, of forgetting, a place of lies<br />
A place where you hate us, a place we despise<br />
A place so unreachable, where you can't hear<br />
A place where you're lonely, full of great fear<br />
I've tried to reach you, I've tried to get in, <br />
Yet love cannot pierce what holds you within<br />
I claw uselessly, desperately to unlock the door, <br />
That holds you in darkness, until you are no more<br />
I look in the same eyes, once full of joy <br />
Looking back full of hate, an unrecognizable boy<br />
My world getting smaller, my heart full of grief<br />
I long for your freedom, for peace and relief<br />
I feel your deep sorrow, your anger and pain<br />
Flooding your heart like a down-pouring rain<br />
In the midst of the storm, I can't find you at all<br />
I know that I've lost you, you're deaf to my call<br />
Yet I hope, beyond hope, as I look for the light<br />
I hold out a candle, I wait out the night<br />
I pray that I'll find you, when the storm finally clears<br />
I ache to just hold you and keep you near<br />
Then I see it, I see you, like a flicker of light<br />
And I run to embrace you, and I stand up to fight<br />
I brush off my injuries, bind up my wounds<br />
Walk into the fire and reach for the moon<br />
I grasp through the darkness, I run through the deep<br />
I pray without ceasing, my child to keep<br />
Just when I'm close enough, your light in my view<br />
The darkness and shadows, consume what I knew<br />
If only time could be stopped in its place<br />
I'd linger with you, caressing your face<br />
Stolen from me, the months and the years<br />
Washed away is your childhood with each fallen tear<br />
I sit in the shadows, as autumn leaves sway<br />
If I find you again, I'll beg you to stay<br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-51265896135666496062016-07-27T23:18:00.005-06:002016-07-27T23:29:14.680-06:00A Memorial to our Sweet Hen's <div dir="ltr" style="text-align: left;" trbidi="on">
I awoke to the sound of my son screaming and crying, he struggled to get out the words, "Melody, Melody," the name of one of our chickens. Two mornings ago we found them, in a scene that keeps replaying in my mind, leaving a lump in my throat--a scene I am trying to forget. They were attacked in the night by something terrible, the coop door left ajar; my doing. I keep wishing I had one of those "time turners" from Harry Potter, in which I could turn back time, secure the door; so to change the events that unfolded because of one mistake. But I cannot. <br />
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I have never been affected like this before, it's the worst kind of sorrow, to have made an error that cost me so much, one which can't be reversed. I don't do well with the finality of such events. I know you are saying, "chickens die every day, we eat them, so what's the big deal?" I guess it's because we raised them from their second day of life, we have so many family memories associated with them. Who knew such a simple animal could provide us with so much joy and endless entertainment: "Chicken TV," we call it. <br />
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Ever since I was a little girl I wanted to be a farmer. I guess it was a romantizied idea born out of my favorite children's story Charolotte's Web. I am delighted by animals, they amuse me. I am in awe of so many things about them. From the beauty of different patterns and colors, to the way God even seemly gave them different personalities.<br />
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Melody, a beautiful black hen, with a tinted mixture of sparkling colors from blue to red, that would shift in the light of the sun; was definately the at the top of the pecking order. She was aggressive and always the first to eat and drink. She would run to our back door each morning. My husband had inadvertantly "trained" her, by tossing food to her while we were out on our patio one day. After that first incident, she would litterally come to the back door every day and peck on the glass, begging us for a treat. <br />
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Daisy, was our fat with feathers, white Brahma; basically a show chicken: solid white with a black scarf of feathers wrapped around her neck and flairing feathers laced around her feet. She was quite the sight, and much fancier then what you think of when you think of a chicken. She was beautiful and not only that, she was sweet. <br />
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My little Bug, loved her with a deep girl-child love, the kind that makes an animal as close as your best friend. This is a love I understand, because she is so much like me at that age. Daisy was a our chick who almost died but pulled through with prayers, and she was my daughter's constant compainon, whom she held each day as she was sweet and docile. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWYujiu5PYo8l6TkUfCc55qjLD8edTdOG4yPGv_-T9f-dCwbvIQ4gNCUeJ2IO-Mg-6ieHPtWnn9kHGetrZH2cY_JMJGE566y5ViOA4BKvVrt7ENDd8p_uOJZikw1W_7vo2RSsQhW0EIis/s1600/IMG_1011.JPG" imageanchor="1"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWYujiu5PYo8l6TkUfCc55qjLD8edTdOG4yPGv_-T9f-dCwbvIQ4gNCUeJ2IO-Mg-6ieHPtWnn9kHGetrZH2cY_JMJGE566y5ViOA4BKvVrt7ENDd8p_uOJZikw1W_7vo2RSsQhW0EIis/s320/IMG_1011.JPG" width="320" /></a><br />
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And dear Peep. Little Peep's made his debut riding in a Barbie car around the house as a little chick. Peep was our blue egg layer and also would allow us to hold her, she looked more like a hawk then a chicken and was beautiful in her own way. My youngest son, last night, with tears in his eyes said "Mommy, I don't know how I can live with out peep." And my heart aches.<br />
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The loss of our hen's affected me in such a deep way; I am still processing through it and trying to make sense of it. But it is hard to make sense of such things. The more I try the more I hurt. The more I reach to undo the past the more I ache with regret. There is nothing I can do to change what has happened, and that is the difficult part for someone who wishes to control things that cannot be controled. I am faced with the reality that things are out of my control. Though we all know it, until something like this happens, we don't realize how much we are trying to munipulate the events of life to avoid pain and to fix things that cannot always be fixed. Life and death are out of my control. Pain and trauma cannot always be avoided. I couldn't protect my children from loosing something they loved so very much.<br />
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These lessons of life are so hard. But there is beauty in some of these things and so I grasp for it.<br />
These simple creatures gave us so much joy and we loved them. I didn't realize my affections for them until this happend, or how I miss the pecking at the door and the actual personalities that were in these individual birds. I am amazed at the Creator God, that creates beautiful and amazing animals. He could have just created animals and left it at that. But He did more then that. He intricately designed them in such amazing ways, with beautiful colors, with actual traits and personalities that are unique to them. He created them for our pleasure, indeed, we were blessed by them. They made us laugh, and now they cause us to cry, because they meant something to us. They are His gifts to us and I am astonded; that He does this, that He reaches down to us and blesses us with the gift of pets, simply for our enjoyment. That is personal and I feel in it my pain. I am touched by His handywork and I can't deny the impact it has on me. <br />
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I am reminded that I am human, and I do make mistakes. I am reminded that some mistakes are deeply painful, with no way to turn back time and undo them. They carry a weight of darkness, if they define me, because they are final. Am I a horrible mother because I forgot to close the door, which lead to the death of our beloved pets. I feel like one, I do. I am not good at giving grace to myself though I give it to others freely. Thank God for His grace, I bath in it, I take it in, I let it wash over the darkest mistakes that I make, knowing that He is GOD and I am not. Is it really ALL up to me? Ultimately He is in control. He could have let the preditor get hit by a car, He could have woke me or helped me remember I left the door ajar. He could have made the neighboors dog bark, but He allowed thing this to happen. And that is an entire different post isn't it? That He allows pain and suffering in the world, but He does. He is in control not I, and I find freedom in that. I find freedom in trusting in His plan as He allows it to unfold. Because He is God I will trust Him to work this out, already it has brought the kids and I closer as we hold tightly to each other to get through this.<br />
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I thank God for the sweet times we had as a family, laughing at their chicken antics, playing with them, caring for them as He entrusted us to watch over them for their short time on this earth. We connected with each other enjoying them together, and the whole neighborhood has enjoyed our small urban "petting zoo". Truth be told, we were better because of them.<br />
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And I must share a picture of our sweet survivor Pepper, who has a dear place in our hearts because she is on the lowest end of the pecking order and is always picked on. I bandaged her wounds up and we've been keeping a close eye on her injuries. She has sure showed her strength and she's pulling through so far. <br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-10301112707382933592016-05-08T10:18:00.002-06:002016-05-08T10:18:29.147-06:00To the Women in the Trenches-- I honor you on Mother's Day<div dir="ltr" style="text-align: left;" trbidi="on">
A few weeks ago my son was admitted to the Day Treatment program again, if you are unfamiliar with such a program, it is the step down intensive out-patient program for children who would other wise be admitted on the psychiatric unit, who have both mental health issues, as well as special needs. <br />
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It was there that I sat in a room full of parents I had never met before and yet was instantly welcomed into a club I never intended to be a part of. The first day I sat in a room full of strangers and pored my heart out, overwhelmed by the difficulties I face daily, parenting a child whose behavior is erratic, unpredictable, and sometimes violent. No one sees what happens behind closed doors, but these mother's understood exactly what I was talking about.</div>
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There was no judgement in this place, only grace and acceptance. As I shared my story through controlled sobs the other mother's nodded, their tears of understanding streamed down their wearied faces. They didn't offer solutions or strategies, they just sat with me in my pain and weariness from the toil, and sighed with a sense of "yes, we've walked where you have walked." Strangers, gave me hugs, exchanged phone numbers and instantly became friends. In the most unlikely of places, the psychiatric unit of the hospital, I found solace in the comrades, of those I'd never imagined would be so.</div>
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I saw a strength in this place that I have never witnessed before. The strength of women who are raising children with special needs. Some of these special needs are autism, some are children like my son, who are "autistic like," but don't fit into any exact box, they have sensory issues, they have emotional dis-regulation, they have difficulty communicating their needs and emotions, they are explosively angry and destructive at times because they are overwhelmed by so many things that we can't understand. Some have multiple diagnosis's like ADHD, OCD, and bipolar. </div>
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These are mother's whose pride was ripped to shreds long ago. We couldn't brag about our children's milestones, accolades, or academic achievements. Rather, in the early days, the preschool teachers phone calls shocked us with concerns about speech delay, the inability to concentrate or sit still; and for some, already being kicked out of preschool. Yes, some of these mom's children had been kicked out of daycare's and multiple preschools due to their behaviors. </div>
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These are mother's who get calls from the school--"your son hit a student again today, your son can't sit still, you need to leave work and come pick up your child again." These are the mother's who work multiple jobs to make ends meet,or are afraid they will lose their jobs because they have to pick up their child again. These mother's are doing the best they can, yet sometimes, to the outside world, their children appear to lack discipline, or just need "a more firm hand." </div>
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Yet as I observed the women in this circle, I saw a resounding familiar theme. Each woman had gone over and above to access help for their child at an early age, sought early intervention, worked tirelessly with the school and with Dr's, and therapists and teachers to help their child. Many had spent countless dollars and resources to get testing for their child, to do alternative therapies, to do everything in her power to help her child, take parenting classes, trying every method of discipline, read every parenting book, tried every diet. Yet we all ended up in this place, in this circle on the hospital floor having our child admitted yet again, for things our unconditional love could not control or heal.</div>
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None of us mother's asked to be here, nor did we ever dream that the babies we carried in our womb would be suffering from the things that they suffer from daily. I never knew this side of mothering, until I was cast into it, trying to make sense of my child's pain and special needs which I'm still struggling to understand.</div>
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This isn't the typical Mother's Day post, sweet and happy with a bunch of beautiful children surrounding a smiling mother. This is the real deal, that commercialized holidays can't change--even for a day. It's the sweat and tears that those of us mother's give daily to meet the needs of our typical children, while balancing the needs of our very special children--whatever they have, be it autism, medical needs, or mental health issues.</div>
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I honor these mother's today, the women in the trenches with me. They are some of the most beautiful people I have ever met. They feel isolated, because they can't always leave their homes on the days their child is not well. They may not be able to take a break today because they have no one to watch their child with special needs. They are the women in the grocery store, crouching down to help their child who is having a melt down because of the sensory over load of being out in public, they are the mother's who are apologizing to you because their autistic child just pushed your child on the playground. They are the mother's who love their children more then anything, but their own child may not hug them, may hit them, may tell them "I hate you," every day. They didn't get breakfast in bed or a card today. They may have woken up to screaming, kicking and two hours of tantrums as I did this morning. </div>
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They don't need sympathy, that is not why I am sharing this difficult post. I'm sharing this because I think sometimes we forget what happened in that circle, is what is needed most. We need each other's support and love, and we need each others understanding. We also need more people to realize the shear number of children that are actually fighting mental health illness in this country as well as Autism. I know that Autism is not a mental health disorder, and because of that, awareness has been increased and support has been granted. On the flip side, there are just as many or more children with sensory processing issues, bipolar, ADHD and other impairing special needs that are not given the same recognition or help. There are certainly not enough resources or help for these children or their families.</div>
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My son has been hitting me every day since we were discharged from the hospital early this week, some might think he's in worse shape right now then when he was admitted, but guess what--the insurance company told us our allowed time on the unit was up--so he was discharged before we could finish getting him the help that he needed. So, we are left to try to figure it out on our own yet again. </div>
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I can't express to you the countless other mother's who went home in worse situations then me, with children who have been kicked out of schools, have multiple court appearances, only for the parents to try to figure out on their own how to help their aggressive and struggling child at home. Something has to change as there is no respite, and often no adequate help for these struggling families. My eyes were opened to a side of mental illness in children that most of us have never been exposed to and would wish to ignore, but it is very real.<br />
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How can you respond? This is a call to action not sympathy. The Bible says, "To him whom much has been given, much is required." Count your own blessings, and then ask yourself if there is something you could proactively do to help a mom that you might know who is the parent of a child with special needs. You could talk to your church leaders about starting a once a month respite night for parents of children with special needs. You could volunteer to help support one of these special children so his parents can go to a church service. You might just offer an encouraging word to a mother whose child is having a melt down in the grocery store. You could start a support group for other parents in your school or your community. Perhaps you could do something even more practical. You know what you are capable of--but maybe you could stretch yourself for an hour or two and give this mother a break she hasn't had in months or years. Maybe you could invite that difficult child in your school to your child's birthday party and try to incorporate games that everyone could participate in. There's a lot you can do, if you just look around you will see the needs. <br />
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To the Mother's in the trenches, I honor you. I honor your courage and bravery. Many of you do not have the support that I have from family and friends. I am in awe of you. I would challenge you to commit to take care of yourself. So many of us are giving up our own identities in the fight to help our children. Only recently did I realize that I was entering this sort of pit, and I knew I needed to get help. Sometimes we have to humble ourselves and ask others for help, to tell our family exactly what we need. You will find that many are willing to help--they just didn't realize how hard things were for you. People can't help us if we don't tell them what we are going through. I challenge you to be open with your story and your struggles, so that we can change the face of mental illness in this country and we can get help and support for our families and struggling children. I also challenge you to get up early and walk, to eat healthy and get sleep and just physically take care of yourself so you can be the best mother that you can be for your other children. <br />
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Lastly, you are not alone. Please comment below so we can all support each other. You are deeply loved and cherished by the very God who created you. I know that it's hard to understand why He has allowed these struggles in your life. I don't pretend to be able to make sense of it, but I know that without the knowledge of His love I would be truly lost. I hope that if you do not know Him you will seek Him out and find the grace that only He can give to meet your deepest needs.<br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com1tag:blogger.com,1999:blog-3004347384734158341.post-80069997490509094082015-10-18T22:57:00.001-06:002015-10-20T12:52:22.181-06:00Get the skeletons out of your closet and put them in the front yard!<div dir="ltr" style="text-align: left;" trbidi="on">
Last week my sister and I went to a pumpkin patch and picked out pumpkin's with our kids. There was a pretty nice selection, I'll admit. Lots of sizes, cool shapes and even some neat heirloom pumpkins, yellow, rusty orange, red, white and green. Only one of my kids was much into picking them out. Yes of course, you might remember one of Storm's special interest's is decorating. It's an all consuming type of obsession with everything having to do with decorating for the holiday. Right now for fall, and basically since September, it's been a maddening, anxiety producing, can't stop thinking about how to rearrange lights, spider webs, skeleton's, tomb stones and now since the visit to the pumpkin patch--pumpkins. I'm not sure how to explain the intensity of his obsession with decorating, but once it starts, nothing is going to stop him from working on his projects. He wakes up talking about it first thing in the morning around 6:00 AM, and it's the last thing he talks about as his head hits the pillow. Tonight, he can't even settle because he's thinking about how he will rearrange things tomorrow. I've never seen anything like his kind of determination, effort and persistence when it comes decorating. He will talk to strangers about it as they walk by our tomb-stone engulfed yard, he will talk to kids about it at the park, at church, at school; basically to anyone who will listen for even a second. Or even if you wont listen he will still tell you about his plans for adding a smoke machine and maybe some blow up decorations next year. He will keep talking to you as you wave and smile and walk away, he still has more to say as you walk around the corner; he's never done on this subject. He is always thinking about what he will do next, even if it's just rearranging the set up in our front yard.<br />
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Years ago I didn't understand these obsessions or even see them as such. Mr. Shane, his favorite worker man, came to build our attic fan. After which, Storm referred to himself as "Me Shane," for literally two years and that's when all his "projects" began. He would be the same "worker man" every day and would yellow-tape off my kitchen; as a: WORK ZONE while I was trying to cook. The WORK ZONE continually expanded until the entire main level was blocked off with caution tape and to be honest it was hard to maneuver around it. After a few weeks of trying to be tolerant, I though to myself: "enough is enough kid, I need to have my house back". This type of upheaval and clean up of the "WORK ZONE" inflicted a melt down of epic proportions. At the time, I simply saw this as defiance. I now understand I was inflicting the worst kind of anxiety on him when I took down all his caution tape; because I think his special interests, which belong to him alone, give him a form of control that he doesn't have over anything else in his life. <br />
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He struggles with reading and writing and with school in general. This year, because he is now in second grade, he is starting to get picked on at school. He sometimes gets in the other children's personal space and makes a lot of noises and vocalizations; which second graders don't appreciate and don't over look like the kindergartner's did. His mind is so busy, that he struggles to focus and he talks incessantly about things that many of his peers don't relate to and that don't interest them. As his peers get older he is struggling to connect with them because they are maturing in ways he is not.<br />
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My son is brilliantly creative and incredibly persistent and can work like no body's business on the projects that he is passionate about. His brain is moving at the speed of lightening, and his body at the speed of a tornado. Watching him and listening to him talk so fast, makes me tired for him. I want him to find rest and peace, yet he works tirelessly and anxiously; having to have things just so. Oh, how he struggles to slow down. It's taken years to see the world through his eyes and I'm still trying to understand him even now. For every challenge he faces, he has many gifts that amaze me. <br />
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He recently started to draw cartoon like characters. I asked him how he knew how to draw them so well and he told me he saw a picture somewhere and that it stayed in his mind. He said when he sees things in his mind, he remembers them. Suddenly I realized that he has this visual memory and I think this is why he struggles so much with language and learning to read and write. <br />
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I believe he has a vision of what he wants his Halloween-masterpiece-art-scape of our front yard to look like. To him it's not just a mess of two months early plain-old every-day Holiday decor. It's more than that, it's his expression, it's his vision, it's his creation, it's his art. He loves it so much he wants to share it with the whole world. He wants you to stop by and say "Wow, you really worked hard on it this year, that's amazing." Or "Wow, that skeleton popping out of your Mom's garden pot really spooked me!" He delights in sharing his vision with the world. <br />
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He and I used have conflict all the time, because my need to control and my lack of understanding super-seeded his need to create. I thought being a good mom was equal to a clean and orderly house. I thought his immediate obedience and listening to me the first time I said something, meant I was in control and thus I was raising a respectful child. This respectful child would reflect that I was a good mom. That's how it worked with my other kids, but that concept didn't work with him. The more I fought to implement this ideal, the more Storm fought me. The more I tried to make him conform, the more tantrums he had and the more unhappy both of us became. I thought Storm's difficult behavior and tantrum throwing, said to the world "You are a failure as a parent!" I allowed teachers and other's critical comments about him to reflect on me as a mom. <br />
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For those of you raising these strong willed, passionate, tantrum throwing kids. Stop judging yourself right now. You are doing the best you can in the moment. First, I had to let go of these "ideal's" and "should's" I was telling myself. That my house "should" be clean, and that I "shouldn't" have caution tape all over the place and paper towel roll skyscrapers in my family room. I have never been a big fan of Halloween, and I don't like all the dark things associated with it. I had let go of worrying that people would assume that Halloween was my favorite holiday and would therefore make assumptions and question my character, based on the shear fact that the outside of my home currently looks like Harry Potter's Hogwarts and or a real cemetery. I've had to realize that God's the only one I need to please. Others are free to assume what they'd like, but God knows my heart and having skeletons all over my front yard might be better than having skeletons in my closet!<br />
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I thought that Storm was the one with all the issues, but God often places him like a mirror in front of me, forcing me to see the areas in which I need to grow. Why do I worry so much about what others think of me? Why am I so hard on myself and expect perfection? Why am I so uptight all the time and controlling? Is it most important for people to see that I have a perfectly obedient child and praise me for being such a great mom in that moment? Or is it better to have a child that eventually learns real coping skills and how to handle the hard things in life. To raise a child who knows that I empathize with his struggles and knows that even if he fails, I'll still love him regardless, and that its okay to make mistakes and get up try again. That I accept him as he is, with all his "stuff." Isn't that what we all are longing for? Unconditional love.<br />
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Things are not perfect, they are so far from it and I'm fine to keep it that way. Trying to be the perfect Mom was really hard and really unattainable. When I look in the mirror now, I see a woman who is learning one day at a time to be the best mom she can be for her children and that is good enough. She doesn't have it all figured out, but she knows that God does and He loves these kids even more than she does. This woman is a real person, and she's far from perfect. She makes a lot of mistakes, but when she does, she admits them and admits to her children she needs God's help. She is learning to forgive herself and accept God's amazing grace, because when she does that, her parenting reflects this same kind of loving and merciful grace. She recognizes that her kids are learning too, and that this thing called childhood is messy and it's meant to be. It doesn't matter what strangers think she should do because a fit in the grocery store or at the zoo is a learning opportunity; not a means to impress the outside world with how good her parenting skills are, but an opportunity for a mom to teach her child what he needs to learn in that moment. <br />
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Maybe if we stopped putting forward our pintrest perfect lives and instead shared the real and genuine parts of ourselves, the parts that aren't so put together and photo worthy, then other mom's would know that they are not alone in their struggles. Maybe we would start supporting each other and saying things like "wow this mom gig is hard! I've been there too! I'm here for you sister!" Maybe if we put the skeletons in our front yard and stop being ashamed of the things we struggle with; then others would start taking the skeletons out of their closets and take a step toward being more genuine. Not one mom has it all together, not even the ones who appear too; parenting is hard work and parenting a challenging child demands the support of others who have been there and done that and survived!<br />
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My sister and I brought home our colored pumpkins. We both had ideas of what they might look like on our door stop. My sister's turned out, just as she expected.<br />
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Aw, isn't that so cute! I love her creativity!<br />
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Now these are mine: You can guess who decorated them for me. I seriously did try to deter him from painting these ones so I could have a cute front porch too! But alas, these are the results and they just make me laugh! I hope you can find a way to laugh too! You are not alone! So get those skeleton's out, or come by and check out mine!<br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-85362175660416461442015-10-15T20:34:00.004-06:002015-10-15T20:38:54.516-06:00Therapy Shoppe Review and Giveaway!<div dir="ltr" style="text-align: left;" trbidi="on">
I am so excited to offer my first giveaway, compliments of the Therapy Shoppe! Last week Storm and I were so excited when our Sensory Seeker's Kit arrived in the mail. This awesome kit has everything he needs to keep his hands busy, and it is something he's been using at school and at home to help calm himself when he is stressed. Click this <a href="https://www.therapyshoppe.com/category/P2948-sensory-seekers-fidget-kit-focus-fidgeting-toy"><span style="color: purple;"><b>link</b></span> </a>to view what is included in the kit:<br />
<span style="background-color: white; font-family: ff-meta-web-pro, sans-serif; font-size: 13px; line-height: 20.4px;">This kit is "Created especially for sensory seekers and those who struggle with tactile defensiveness, this exclusive Therapy Shoppe® kit includes 7 fabulous tactile fidgets: a Brain Noodle, Tickley Tactile Ball, Fidgeting Fleece Bag, Spiky Pickle Fidget, Sensory Finger Squeezer, Squiggle Band, and a tin of Thinking Putty. Seven of your all-time favorite tactile fidgets that can be very helpful and effective for calming, focusing, self-regulation, and developing tactile awareness."</span><br />
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My son's favorite items are the Squiggle Band which is the pink bracelet at the top and the Thinking Putty. The Squiggle Band is stretchy and can fit over his wrist and also can be stretched and provides some resistance. He also uses the yellow circle a lot which is a<b> </b><a href="https://www.therapyshoppe.com/category/P3240-hexagon-chunky-chewy-necklaces-tubes-bracelets-jewelry"><b>sensory finger squeeze</b>r</a>. Storm also has some problems with fine motor and this is a good finger strengthener, if used correctly, only he wanted to chew it a lot and so I will need to order him some chewing jewelry next! The yellow brain noodle is very soft and flexible and he enjoyed this piece as well. The kit is just $19.99 and it's convenient because all of the items are included for you. One of our goals for Storm after his hospitalization was to help him work on coping skills that he could use at school and at home. One of the coping skills he found helpful, was that when he is stressed, he can have some hand fidget items that he can manipulate. This is a great way for him to do that.<br />
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When Storm was diagnosed with ADHD last year, and started on medication, we sort of just forgot about all of his sensory issues, which he has had since childhood. We thought maybe it was only related to the ADHD and once that was treated, the sensory problems would go away. That has not been the case. He is a Sensory Seeker, which means that it takes a lot more sensory input and stimulation to really get him to a calming place. Kids like Storm have an extremely difficult time sitting still and listening. <br />
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One of the other things he is also using at school is a theraband. This is an exercise band placed around the chair legs, so that he can push and pull on it with his legs while he is sitting in class. This helps feed his need to move constantly, while also giving him some pressure input on his legs while he is sitting. Some children might like a <a href="https://www.therapyshoppe.com/category/P1781-seating-discs-ot-sensory-wiggle-seat-cushion-wiggle-seats"><span style="color: purple;"><b>wiggle seat</b></span></a> instead, we tried this with Storm, but he didn't use it as much as the theraband.<br />
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Last year, as well as at the beginning of this school year, Storm was chewing his clothing and then started to chew his lip so much that he actually damaged his salivary gland. The Occupational therapist told us that, much like a baby who needs a pacifier, Storm is trying to self sooth with oral sensations like chewing. One thing that has been great for him is a <b><a href="https://www.therapyshoppe.com/category/P1774-eye-popping-gator-dino-fun-oral-motor-whistles-sensory-toys"><span style="color: blue;">whistle</span></a> </b>that doesn't make any noise. I just found these <a href="https://www.therapyshoppe.com/category/P3233-blow-pens-oral-motor-toys-tools-ot-sensory-toys-tools"><span style="color: blue;"><b>blow pens</b></span></a> at the Therapy Shoppe and they look like the perfect Birthday gift, as he loves art, but they would also give him that oral stimulation that is so calming for him. <br />
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I was impressed with how fast Therapy Shoppe got in touch with me and answered my questions via email. I'm also impressed with the number of amazing sensory supports they have available, ranging from <a href="https://www.therapyshoppe.com/category/P3240-hexagon-chunky-chewy-necklaces-tubes-bracelets-jewelry"><b>chew jewelry</b></a>, which I hope to get next, <a href="https://www.therapyshoppe.com/category/P1722-weighted-vest-for-kids-si-ot-sensory-integration-vests"><span style="color: blue;"><b>weighted vests</b></span></a>, <a href="https://www.therapyshoppe.com/category/P2241-calming-weighted-blankets-vests-ot-autism-sleep-help"><b><span style="color: blue;">blankets</span></b> </a>and lots of amazing learning aids for visual motor skills (writing and holding a <a href="https://www.therapyshoppe.com/category/P1749-pencil-claw-grips-grippers-writing-claw-handwriting-writing-tools"><span style="color: blue;"><b>pencil correctly</b></span></a>), as well as<span style="color: purple;"> <b><a href="https://www.therapyshoppe.com/category/P2110-taking-no-for-an-answer-family-kids-social-skills-games">social skills stories</a> </b></span>and<a href="https://www.therapyshoppe.com/category/P2849-sacred-earth-drums-calming-cd-focus-calming-music"> <b>calming CD's</b></a><b> </b>for anxiety. <br />
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Overall, we loved the Sensory Seeker's Kit, as well as the convenience of <a href="https://www.therapyshoppe.com/"><span style="color: blue;"><b>Therapy Shoppe</b></span></a>, which has all of the products we could possibly imagine for our sensory needs all at one convenient online location.<br />
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So how can you get in on this <b><span style="color: blue;">Sensory Seeker's kit Giveaway</span></b>? Here are the steps:<br />
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Leave a comment below about your Sensory Seeker. Click the <a href="mailto:kristina.mommyoffour@gmail.com"><span style="color: #a64d79;"><b>contact me</b></span> </a>link and shoot me an email with your contact information. Lastly, like me on <span style="color: red;"><b><a href="https://www.facebook.com/imexpectingtheunexpected?fref=nf">Facebook</a></b></span>! <br />
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Good luck to all, please tell your friends, I will keep this Giveaway open until next Friday when I announce the winner!<br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com2tag:blogger.com,1999:blog-3004347384734158341.post-11698145754051865782015-10-09T14:33:00.002-06:002015-10-14T09:59:27.975-06:00Ode to our Challenges!<div dir="ltr" style="text-align: left;" trbidi="on">
Welcome to Fun Friday! This is my attempt at making you look forward to something fun each Friday, so you will come back for more and hang out with me. Isn't that so creative of me? One of my favorite Author's and Bloggers is <span style="color: blue;"><a href="http://jenhatmaker.com/"><b>Jen Hatmaker</b></a></span>. If you don't know her, pop over and check her out and her latest book "For the Love." Every woman needs to read this book, to give laughter and rest for your soul. I must give her creative credit, for she has perfected something called "Thank-You Notes," which each time I read, I nearly fall off my chair laughing. We've all heard it said, laughter is the best medicine. There is much truth to this. So the following is my attempt to help us mom's who are dealing with unique challenges to laugh at the issues we deal with that the rest of the world may not get. Be it health issues, allergies, sensory, learning differences you name it--these are the things we live with--so here I go, let me know what you think!<br />
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<b>Thank-You Notes for My Girls in the Trenches</b><br />
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Thank you severe reflux for keeping my infant and me from ever sleeping, without you I would have been showered, cute and potentially thriving for the first two years of my son's life, not like I needed sleep anyway. Thank you G-tube for giving me more gear to carry around than humanly possible--I love how heavy and cumbersome your Kangaroo pump was--naming you after a Kangaroo didn't make you any more fun to deal with! Thank you Child Find for pointing out what I already knew was true about my child and for rewarding me with free preschool so that I could have a few moments of much needed quiet time, which I never dreamed was possible. Thank you Occupational Therapy, for playing with my son for an hour so that I didn't have to install a climbing wall, foam pit, or inclining ramp in my own home.. Thank you <a href="https://www.therapyshoppe.com/"><b><span style="color: purple;">Sensory Fidget Toy's</span></b> </a>for giving my son hours of chew-able fun so that his the pencil tops, t-shirts and his own lip could have a break from the constant chewing. My clothing budget is eternally grateful. Thank you dollar store sound devices for your ear piercing death-defying high pitched whistles, which reminds me to be grateful for a time before I had children and lived in complete silence. I never appreciated it at the time. Yours truly, Why did the heck did the dentist put this toy in the treasure box? Thank you noise canceling head-phones for making me have to repeat myself ten times before realizing that my son couldn't hear me anyway. I love practicing saying the same thing over and over, and now I know how annoying my voice really is. Thank you creative speech therapist for burning the image of the letter V, as a warped V shaped Vampire with fangs trying to kill us. Now my son and I will never forget what you resemble, though we still can't remember what you sound like, thanks for trying anyway. Thank you <a href="http://allaboutlearningpress.net/go.php?id=1201"><span style="color: purple;">Dyslexia and Dysgraphia</span></a> for helping my son to write me a card which reminded me that I am a BASS Mom, this is way better than being the Best Mom, I'm one step ahead all the other mothers and now I'm a great catch too. Thank you food allergies, intolerance's and the like for making the entire world of children allergic to every food, so now we no longer have to be the only ones. Obviously kids love pencils as Birthday treats more than food anyway, how did you know? Thank you impulsiveness for helping my son do things before he has time to think about the consequences, you knew I needed to practice apologizing to neighbors, teachers, other parents and friends, without you, I would have more social engagements and free time than I could imagine. Thank you hyperactivity for wearing me out every single hour of every single day. I wish instead of living with me, you would empower me with the same energy, so that I could keep up with you! Thank you emotional outburst and emotional dis-regulation for telling me "You are the worst Mom" and "You are the best Mom," within the same hour. Guess what? my self-worth is no longer based on your or anyone's opinion of me because you are so all over the place! without you I would no know unconditional love. Thank you ADHD for the boundless creativity and complete mess that my house is in right now because your hyper-focus has created more art than I can possibly keep up with; sincerely, lover of free art. Thank you landscape yard rocks for your over abundance and lack of purpose, and for being completely free because you came with my house. Did you realize that hundreds of you could be painted this many colors in a single day? There is no end to stopping this so just go with the flow, you are more than a pet rock, you are a masterpiece, embrace your inner beauty! Thank you Halloween and Christmas, for all your marketing which begins so far before the actual holiday. By the time you actually arrive, we have already spent more money on decorations to satisfy my sons special interest's, that we have no money left to celebrate you, best of luck on Black Friday! Thank you neighbors for allowing us to ruin the neighborhood with Christmas decorations in July and tombstones in our yard in August. This is why we live where there is no HOA. Thank you for believing my son really was decorating for Halloween early and that our yard isn't real graveyard (although we did bury some pets in the flower pots). Finally, thank you understanding friends and family for embracing our child's strengths rather than weaknesses, and that reminding us that normal is just plain boring, compared to what we have!<br />
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Please share the great things about your child and what their challenges have taught you! <br />
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Hope you enjoyed this Fun Friday. I am excited to announce that next week I'm going to have my <b>FIRST FREE GIVEAWAY! </b> Please sign up on email so you will be able to participate in a Free gift from the Therapy Shoppe, a one stop place for your therapy and sensory needs! I will be reviewing their product and I will pick one lucky winner to win one of their sensory products!<br />
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Get the book<br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-14922597927841401792015-10-04T21:00:00.001-06:002015-10-05T17:39:24.949-06:00Let's Cuddle<div dir="ltr" style="text-align: left;" trbidi="on">
Today my son smiled most of the day. This afternoon he sat next to me and said "let's cuddle." He really has the most endearing personality. Those of you who know him know how sweet he can be. Just a few nights ago I was crying and I told Matt, "I really miss him." And it was so true, for the last month or so, he has been intensely different from the child who was with me today. Sometimes, parenting Storm is like parenting Jekyll and Hyde. Each morning, I wake up and I'm not quite sure what I will get. Sometimes this is hard, I try my best to be ready for it, but sometimes it takes me by surprise. When we have an extended period of stability, sometimes I get so comfortable with the boy that I had today, that I forget that the other side of him is there. Or the opposite happens, sometimes, when we've had several weeks of roller-coaster emotions, non-stop energy, and low frustration threshold; it is a welcomed surprised when the boy who wanted to just "cuddle" came and sat with me today. <br />
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In that moment I just took it in. I stroked his hair, he said "I love you mom, you are the best mom." We tossed the football, and he didn't yell or get mad at the way I threw it. He was patient with himself and with us. He wasn't worried about anything today. He wasn't very sad or angry or frustrated. He was just a boy. He rode his scooter. He played with some neighbors. It was mostly quiet. It was a good day. Tonight I'll just keep it close to my heart. I know the Lord knew I needed this day. <br />
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At Church this morning we talked again about surrender. About the book of James and how we should "consider it pure joy, my brothers, when you encounter trials of many kinds, knowing that the testing of your faith produces endurance." James 1:2-4. That true worship, is just that, surrender. The laying down of ourselves. <br />
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God speaks to me so deeply through song. <b> <a href="https://www.youtube.com/watch?v=NyYj9HCDixc"><span style="color: #741b47;">Here is the new song of my heart</span></a></b>, take a moment to listen. There is such freedom in this song of surrender, the words are so true and exactly how I feel right now. I wept so hard, in church today, I could have laid down on the floor and not cared if anyone was near me because in that moment, it was just me and my God. Not a distant God that sits high in a cloud, somewhere looking down on me. But the God of the Universe, the Maker of everything, The God Who Sees, The One who knows me in and out, and loves me personally. A God that I am coming to know so deeply in the darkest of places as He has reached out to me, and walked with me through this pain. I offered Him my tears; tears of praise to a God that is holding me in the midst of my pain, not because I am strong--but because He is! He loves me, and He loves you. If you are broken inside, as the song says, give Him your life; He will not fail you.<br />
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From Elevation Worship:<br />
"Give me faith, to trust what you say, That Your good and Your love is great. I'm broken inside I give You my life... I may be weak, but your Spirit is strong in me, my flesh may fail, but My God You never will"<br />
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"You have taken account of my wanderings; Put my tears in your bottle. Are they not all in Your book." Psalm 56:8</div>
Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-56079390953196653322015-09-25T22:20:00.004-06:002015-09-26T19:04:03.954-06:00Lord have mercy<div dir="ltr" style="text-align: left;" trbidi="on">
How do I begin to update you on the where about's of my heart and the roller coaster ride of emotions I've experienced over the past few weeks? For those of you who are just joining in, let me give you a little history.<br />
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Our seven-year-old Storm has always been a little bit of a handful. I often say, "for the first twenty-four hours of his life he was the calmest baby ever". Sometime around midnight on his first eve home, the crying started and it basically never stopped. He was "colic," the doctor's told me, "he'll grow out of it". So I waited. First I had a colic infant, then a colic toddler, then a colic child. He just couldn't sooth himself easily and he still can't. His emotions have always been extreme for the situation. He's extremely happy, extremely angry, extremely sad. He switches from high to low in a heart beat, and back again. He goes from zero to sixty and this repeats over and over in the course of each day. It's down right exhausting. <br />
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Around the time he turned eighteen months or so, his tantrums got worse and started to last longer and longer. He always had something to say, but his speech was very unclear; we figured that was what was driving his emotions. "He's frustrated," the doctor's told us "because you can't understand him." Like any good parent we enrolled him in speech therapy hoping this would be the solution.<br />
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Though he remained in speech therapy, the tantrums continued. Our speech therapist recommended we see an occupational therapist for further evaluation since he could hardly sit still or pay attention during his fifteen minute speech sessions. We did so, and were told he had a sensory processing disorder: sensory seeking, they called it. This made sense to us, because Storm was like a ball of energy. He could literally, get up at 6:00 AM, ride his bike for three hours, go to the pool for four hours, come home and ride his bike for another hour, play soccer for two more hours and never get tired. From dusk to dawn he was going going going; like a wind up toy. So we added occupational therapy twice a week, plus a weighted vest for sensory problems, daily brushing, and a number of sensory diet exercises. But the mood swings continued as did his endless amount of energy.<br />
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Enter kindergarten, and asking a child like this to sit still was like asking a bee to stop buzzing. The school was calling me every other day about his behavior and him rolling around during circle time, bumping into kids in the line, and seeming like he wasn't paying attention or listening. <br />
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We paid for a two day evaluation to rule out Autism, ADHD and other mood problems. The testing center gave him an ADHD diagnosis and we were relieved. He had a lot of Autistic like behaviors, such as the sensory problems and delays in his social relating, delays in his emotional regulation, very rigid and inflexible thinking and some restricted interests, but not enough to diagnose him with Autism.<br />
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We started him on ADHD medications and my husband and I took training classes on how to manage children with attention and behavior issues, it was amazing for the first few months. However, his behavior gradually worsened again. He seemed agitated and angry so the doctor said he needed an antidepressant because irritability in kids is an indication of depression. Reluctantly, I added this medication, but within a few months he was acting even more aggressive, he became combative. He was hitting us at home, he was extremely angry, and at the same time extremely sad. <br />
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He told me right after his seventh birthday that he wanted to kill himself. When I was waiting in the car line at school to pick up my other children, he jumped out of the car and ran towards on coming traffic. I tackled him in the school yard in front of hundreds of smiling mom's and dad's happily picking up their children for the start of Christmas break. It was like the whole world slowed down, like a dramatic movie scene. Only this was my real life. I carried him kicking and screaming to the car and that night he screamed for hours before he finally wore himself down enough to fall asleep. It was Christmas time last year, that I sat glazed over, in the psychiatrist's office feeling the shock of the words "he has bipolar."<br />
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I accepted this diagnosis, because I respected and trusted this doctor and because I was so desperate to help my precious son, I was so desperate for answers. My son was literally climbing all over the doctor's office that day like a wild animal. It was like he was lost somewhere inside that body, and it was a deeply painful and dark time. Later I have realized that this worsening behavior has to do with his sensitivity to the medications. At the time, it made him appear like he was bipolar. We followed the doctor's advice and started him on new medications for bipolar. Like every other therapy that we had tried for him, it helped for a while and we had hope.<br />
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He seemed to do well again for about four to five months, but then all of his "behaviors" started to creep in, the irritability, the anger; what looks like purposely annoying his siblings: getting in their faces, blowing raspberries, making lots of vocalizations, and obsessions with his special interests. The doctor added a new medication and within twenty four hours it was like deja' vu of last Christmas. <br />
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What I had most feared would happen did. Storm became so out of control that we could not control him ourselves, he was hitting us, kicking us, spitting on us, calling us names. If he had any curse words in his vocabulary he would have cursed at us, but thank God he doesn't know any bad words yet! He was throwing anything and everything in his immediate reach. After almost half a day of this and the inability to call him down; We called the police. We had our seven-year-old admitted to the psych ward at Children's Hospital and our hearts were broken. <br />
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Though I have grieved over and over, the many things I have had to let go when it comes to accepting Storm's challenges, I cannot begin to explain how scary it is to see your beautiful child suffering in this way. This night, it was as if my own heart was ripped out of my chest. This feels like too weak to stand, too hard to breath sort of pain and desperation. It's the kind of face on the ground, laying prostrate before God, gut wrenching cry "Lord help me." I could hardly muster the words through the gasping, deep chest, heaving weeping I did that night on the floor of my bedroom. I've cried out to God many many times concerning this boy, but this night I would have given my life in exchange for his freedom from whatever holds him captive.<br />
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He is still currently in the Day Treatment program at the Children's Hospital. This a step down unit from the inpatient treatment. He has nurses and a counselor, an occupational therapist and a doctor. I've been told that he was on perhaps too high of a dose of this last medication, as well as the wrong medication for him. The Children's doctors do not think he has bipolar, and how I do hope they are right; but I will now hold loosely to any diagnosis from here on. The label doesn't matter, I just want to get him the help that he needs. <br />
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We are finding through this process that he does have quiet a few developmental delays including several learning disabilities, which makes sense that all of his behavior issues peaked at the start of second grade. Several doctor's and nurses feel that he really behaves like a child on the Autism spectrum, but for some reason, doesn't qualify for this diagnosis. That is a topic for a separate post, but if Autism is really a spectrum disorder, than it would seem that he is somewhere on this spectrum, even if it's at the end of it. <br />
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The doctor's explained that children with neurological differences often respond much differently to medications than their typical peers. This makes a lot of sense to me; as Storm has had more agitation with the stimulant type medications for ADHD. The doctor's feel very strongly that he does have ADHD, sensory integration issues and a mood disorder. This poor child has a lot of things he has to overcome each day to simply function.<br />
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We just finished his second week in the hospital and the progress is slow. I feel relieved that we are in a place with people monitoring Storm's reaction to the medications, more testing is being done, and we are learning strategies to manage his sensory issues and the extreme anxiety they cause. I have walked through one of the darkest places I have ever been and I still do not have all the answers. I am still learning.<br />
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I'm gonna just come clean with you all. Last year when something similar happened, my first reaction was the opposite of crying out to God. I searched the internet, I went into "fix it" mode as I often do, and I researched and called doctors and therapists and tried everything I possibly could to help my son. For seven years I have known something was unique about him. I have known that he is different from my other children, I have known that he struggled with things that his peers did not. I have been searching for answers for years. We have tried, speech, OT, gluten free diet, GAPS diet, supplements, weighted vests, exercises, medications and the like. The things that helped my other son did not help Andrew and this did not make sense to me.<br />
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I have left no stone upturned in desperation to help my son. If you just got a diagnosis, or if you are in the darkness right now, I first want you to know that you are not alone. I know how you feel, I know the desperation of a mother who wants more than anything for her son to just be an average little boy, who is happy and care free. It is so painful to have a child that is angry; screaming that he hates you, hitting you day after day. It is so painful to see little glimmers of that child's sweet personality for a day or a week and know that that sweet happy child is somewhere in that body; but as soon as you have a glimpse of it, it's ripped away from you. It feels like your child is dying every day and you grieve it as such. And grieve we must, as this is part of the process of finding our own healing, which I will discuss later. I have a sweet friend who frequently grants me permission to grieve and reminds me that it's okay to go through those actual stages of grief: Shock/Denial, pain/guilt, anger/bargaining, depression (reflection/loneliness), reconstruction/working through, acceptance/hope (<a href="http://www.recover-from-grief.com/">www.recover-from-grief.com</a>)<br />
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Wherever you are in these stages, I welcome you here, this is a sacred place. You will not be judged here, you can be angry, you can cry, you can share your pain and know you are not alone. I am relieved right now that my son has Autistic like features, it really explains a lot of the funny things that he does, like obssess about tornadoes and firecrackers and graffiti. Why would a seven year old care so much about graffiti; desperately searching for ways to draw certain letter styles when he struggles still with the actual alphabet? He has a love for working with his hands and especially decorating. Give this boy an occasion and he will decorate better than Martha Stewart! He's got skills that would make her blush! <br />
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Had you told me he was slightly Autistic several years ago, I would have been devastated, but I have come full circle to a place where I am no longer desperately trying to fix him. As my dear friend <a href="http://www.renavigatinglife.blogspot.com/">Rebecca </a>says about her son with PDD-NOS, he's NOT BROKEN! This is how God made him, rain or shine, sunny or cloudy, up and down, my spicy sweet Storm. He is my answer to a desperate prayer for a son. And God is not about to give up on him or I now.<br />
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Believe me, I know we have a mountain ahead of us. I know it's not going to be easy. I know there are going to be a lot of mudslides and treacherous terrains. Yet I have found freedom in letting go as I was literally forced to, when I left my son on the psych unit last week. God took back what was already His; what I had dug my heels into and said "Not this part of my life, this is MINE!" I finally came to the end of myself, the end of my resources, the end of my solutions, the end of my, "but Google said this was what I should do". I fell on my face and I cried out utterly destitute: "Lord, please help me. Lord have mercy on me and my son." <br />
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And in that moment I found peace. Nothing about my circumstances changed. But I changed. I let go of my striving to control, fix and manipulate the outcome of my situation. I let go and I let God be God, cause guess what--He is a way better God than me! I'm not a quick learner and I'm new to this letting go thing, but I don't intend to go back to the old way. It was full of pain, and stress and agony and disappointment. It was full of despair and fighting to have something I could not obtain. This boy is God's boy, He made him and He made me to be his momma. I know I can't do this on my own. I desperately need God's help and the help of those God has put in my life. I am done fighting, I am done striving. My new posture is prayer and surrender; the result is a peace that can only come from a God who never changes, not my circumstances. <br />
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In my next post I will discuss "Caring for the caregiver," and ways those of us taking care of chronic kiddos can attempt to stay sane! <br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com5tag:blogger.com,1999:blog-3004347384734158341.post-81741129564530258252015-09-23T21:39:00.002-06:002015-09-23T21:39:38.170-06:00Henry's Story--a summary<div dir="ltr" style="text-align: left;" trbidi="on">
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Baby Henry was born on May 21, 2009 and shares a birthday with his oldest sister Hannah. He was, as she puts it, her "Birthday present." He certainly is our gift from God. God has used him, since his conception, to bring us to our knees and teach us to TRUST God's plan for our lives.<br /><br />Henry was our first child to be born with hair and lots of it! He has a full head of jet black hair and is truly the cutest thing ever. For the first few days of life he had the most quiet disposition. Then he started screaming. He screamed night and day. After a few days of this, I started thinking, " I think this is more than just colic". I asked our pediatrician to put him on reflux medications, since our first son had severe reflux; and also because not sleeping EVER, gets old very quickly. The medications seemed to work for a while. However, every time we attempted to wean Henry from his medications he would become fussy again. <br /><br />Between three-and-a-half and four months of age he started to have a rattle sound in his throat. Every time I picked him up, I could feel this rattle in his chest. It seemed like he needed to clear his throat but he couldn't. His voice was sort of hoarse. It was kind of cute at first, when he started making noises, because he was enamored with the sound. He thought it was funny and would coo in his raspy voice. But it never went away. And then the symptoms got worse. His nose was congested with severely thick mucous which I had to suction out of him several times a day. I started to worry that he had cystic fibrosis or some immune system disorder. We went to the ENT and our pediatrician put us on antibiotics. The ENT doctor sent us to the GI doctor who attributed his problems to reflux and increased his dose of anti-reflux medications. Yet nothing changed. Out of desperation I brought him to an allergist, yet everything came back normal. She suggested I try to get off of all milk products including casein and whey to see if this helped. It seemed to help a little so I stayed on the diet, but he continued to have respiratory issues.<br /><br />After months of this I began to feel helpless. I went to doctor after doctor and no one seemed to have an answer. Henry was put on breathing treatments because he was wheezing with every feed. However, he continued to get worse. Also Henry had seemed to stop growing and was looking more pale every day.<br /><br />In January Henry had a swallow study in which they watched Henry eat and drink under fluoroscopy. Finally, what I had suspected all along was proven. He was aspirating. Every time he drank thin liquids a little bit of milk went into his lungs. That's why he was wheezing and so congested. His body was working overtime to try to protect his lungs. I felt a sense of relief in finally knowing what was wrong with him. Yet at the same time I felt so angry that the doctors failed to listen to me for months and that it took so long to get a diagnosis.<br /><br />It took a whole month to schedule a bronchoscope with the pulmonologist and ENT Doctors. The bronchoscope revealed why Henry was aspirating. He had a rare birth defect called a laryngeal cleft. There is a small connection between his airway and his esophagus which allows the liquid that Henry drinks to go into his lungs. He was admitted to The Children's Hospital for failure to thrive. At first we stayed for one week. They sent us home telling us to thicken his feeds. We tried this but he continued to cough and choke and we were re-admitted the next week for a scary choking episode he had at home. We ended up staying in the hospital for a total of twenty-five days. They ran tons of test on Henry and it was one of the darkest times I've faced in my life. I felt so alone, and so isolated in that hospital room. I was separated from my other children and from my husband and felt disconnected from the outside world. As a nurse, it gave me great insight as to what people go through who are in and out of the hospital with a chronically ill child. It is the hardest thing I've ever experienced. Worse then the isolation was the pain of watching my baby suffer through all the tests, sedation, IVs and blood draws. It broke my heart.<br /><br />Even after being on steroids and thickening his feeds his lungs did not improve. Finally the gastrointerologist placed a PH impedance probe. This is a probe that went in Henry's nose and was in place for twenty-four hours. It showed that he still had severe reflux and that while the thickened feeds were easier to swallow; after he ate, much of the food refluxed back up into his esophagus and potentially was aspirated later through his cleft. The doctors suggested he have the Nissan fundoplication procedure and G-tube placed. This was one of the most difficult decisions we had to make for Henry. The Nissan is a procedure in which they wrap a portion of the stomach around the esophagus to tighten the esophageal sphincter so that liquids and foods which are swallowed cannot come back up. In a baby this means they can no longer throw up or even burp on their own. That is why it is necessary to also place the G-tube, which is exactly what it sounds like. It is just a tube that is connected to the stomach through which you can feed the baby liquids and also open it up and allow the baby to burp or even vomit if necessary. <br /><br />The day he had the surgery was the hardest day I've faced yet. He was under anesthesia for three hours. Those of you who have had a child go under for any length of time, know what this is like. I prayed constantly and I was so worried for him. He came out fine and slept the whole night. I looked at the tube in his stomach and wondered if I made a mistake. I knew we didn't have any other choice, but I cried and cried over the decision to change his body this way.<br /><br />In an effort to help Henry gain weight the doctors had me mix formula with my breast milk and put it through the G-tube. Henry didn't seem to be gaining much weight or tolerating feeds well. He would frequently wretch after feeds and have to be vented (this is when you let excess air out of the G-tube). I felt that the G-tube was actually making things worse. After a 911 call on his first birthday after he had a small bite of cake, the ENT doctors told me I couldn't feed him any more by mouth.<br /><br /><br />As soon as Henry turned one I started making my own G-tube feeds and stopped giving him formula. Looking back I see that my G-tube formula was not too far off from the GAPS diet which you can find out about via the links of the right side of my blog. I wasn't satisfied with the ENT's statement to not feed my son and that "I'm not sure if he will ever be able to swallow like a normal child." I vowed to get rid of the G-tube as soon as possible. </div>
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In August of 2010 we went to Cincinnati Children's to have Henry airway scoped and have his laryngeal cleft repaired. However, to our surprise, when they scoped him, they found that he did not have a type one cleft as originally diagnosed at Children's in Denver. Instead, they said he had a deep notch which like a cleft, could be contributing to his aspiration when he becomes more inflamed. All his respiratory symptoms had resolved since I had placed him on what I call my "miracle grow" formula. They told me to go home, remove the G-tube, and start feeding him solids by mouth. We went home and slowly increased solid foods, as at the time he was living solely on my home-made thickened formula. Eager for him to gain weight, I started adding all sorts of foods into his diet. I gave him everything soft and then progressed to more textured foods. I did not limit him, I was focused on calories. Now knowing that he did not need airway surgery, I thought of nothing else except getting him to gain weight. However, after a few weeks of eating, all his breathing issues returned. He was congested and his throat sounded just like it did when he was aspirating and swollen. I was perplexed--if he didn't have a cleft, what was causing the inflammation. Also, I realized that he was having more diarrhea again, which never really went away, but seemed to be worse now. Then he started wheezing and needing Albuterol again. I went to the pediatrician and she was also confused--was there something that they missed? And why was he still not gaining weight? </div>
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In January of 2011 Henry's new GI doctor diagnosed him with FPIES which stands for FOOD PROTEIN INDUCED ENTEROCOLITIS SYNDROME. It seems that Henry reacts to the proteins in foods and when he eats the wrong things this wreaks havoc in his gut. This explains the trips to the ER in times before when he would go limp after vomiting, but the doctors never made the connection with food intolerance. We began an elimination diet to try to figure out what foods he can and can't eat. At the time, Henry was still aspirating and could still only drink thickened liquids, nothing thinner than honey, our ENT said it's possible that his swallowing issues are related to FPIES.</div>
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Henry was never behind in his developmental milestones so there was no other reason for his swallowing problems. The doctors wanted us to trial him on a restricted diet and re-test his swallowing in March of 2011. When March came around I called the aerodigestive team at the hospital and told them I knew he was still aspirating. By that time I had learned all Henry's aspiration symptoms far too well. He would constantly sound like he had something stuck in his throat, like he needed to cough or clear it. His chest would rattle after eating or drinking, I knew I needed more time. I had been doing the elimination diet for only eight weeks at this point; in my mind, it took Henry more than a year to get as sick as he was, maybe he just needed more time to heal all the inflammation in his gut and airway?</div>
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We cancled the swallow studies and scopes. I pressed forward, keeping Henry on only a few foods, basically, chicken, rice, his thickened Hemp milk formula and squash and carrots. Around the time that he turned two years old his throat was starting to sound clearer. I started thinning his drink. About 6 months after starting the elimination diet, I gave him a glass of water, for the first time in his entire life, he drank a clear, cool drink of water and he didn't choke. He said "yummy." I bet! </div>
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And we didn't look back. I actually never had them do a repeat swallow study, because it was so obvious that he was completely fine. The weeks went by and he drank Hemp milk and water without thickener and he did not cough, he did not wheeze. It was a miracle. </div>
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I have to confess that again looking at calories, I felt that I had to add more as he was not gaining weight and truth be told, I might have added in more things to his diet faster than I should have. He seemed okay, and I was keeping him off of gluten but I starting making a lot of sugary type foods in an effort to get him to eat. Around Sept of 2011, he started getting rashes around his mouth and he was still having weird diarrhea that wasn't completely under control. Again, I was so happy about his respiratory and swallowing issues being improved that I wasn't quick to try to eliminate things again. I couldn't help but wonder, with him eating so many things, why he wasn't gaining any weight. </div>
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Oddly enough about 6 weeks or so after the diarrhea became worse again I brought Henry into the ER for severe stomach pain that had him curled up in a ball and crying for almost 12 hours. He had a complication called intussusception, which is an emergency and has to be fixed right away before the bowel starts to necrosis. They performed a horrible procedure called an air enema to straighten out his intestines and thankfully he didn't require a surgery. I asked the doctor if this might have to do with his FPIES, I wasn't surprised when they answered "we really don't know if there is a correlation" However, it is interesting to me that FPIES seems to cause inflammation in his entire gut from mouth to anus and intussuception is caused by possibly virus' or inflammation or other causes that doctors don't really understand. I personally, think that something in Henry's diet again was not working for him and that lead to the intussuception. </div>
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Two weeks later Henry started having blood in his stools, and I rushed him back to the ER but he did not have intussuception again thankfully. His appetite continued to decline until he would hardly eat anything and days went by in which I was desperately just trying to get him to take in fluids. I decided I would need to do something soon, as he had already lost one and a half pounds. At 30 months old he weighed only a little over 23 pounds. I could see his ribs and when I picked him up he felt so thin. I brought him to the doctors again, but they had little suggestions other than to put him back on Prevacid, the reflux medication that he had been off of for a year. I asked why would I put him on this if he wasn't having any reflux symptoms? The doctor just said to try it, since they didn't know why else he was refusing to eat. </div>
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We went to Cincinnati Children's Aerodigestive clinic and Henry had scopes done by the top ENT, pulmonary and GI doctors in our country. Miraculously they told us that Henry did not have a TRUE laryngeal cleft but merely a grove, after a few months of not eating by mouth at all, they did a swallow study and gave us the okay to take him home and to start SLOWLY weaning the thickness of his liquids.<br /><br />Though Henry's lungs looked better after a few months of not eating or drinking by mouth, he was still incredibly small and the doctors were concerned about his growth. The nutritionist told us to start adding more foods into his diet and to butter on everything and even try cream. Desperate for Henry to gain weight I did exactly what she said, I put half in half in his G-tube and within moments he was violently retching. I assumed it was just that he wasn't used to the fats, I didn't realize he was reacting to dairy. I continued to give him things like toast with butter, waffles and anything that seemed fattening. He was eating but not gaining anything, he was having profuse watery diarrhea each day. Also, all of his symptoms that had disappeared when we started my homemade G-tube feeds had returned. The silent refluxing, gagging, mucous in his throat, the coughing, the hoarse voice, wheezing and difficulty breathing, all the symptoms returned in earnest. The GI doctor looked at Henry and asked me, "Is his abdomen always this bloated?" I proceeded to tell him that yes, it had always been that way, it would be worse a few hours after certain foods, I explained how he retched and sometimes became limp, pale and clammy and how no matter what I did he had profuse watery diarrhea every day. The GI doctor told me that Henry had something called FPIES, or Food Protein Induced Enterocolitis Syndrome. <br /><br />A light bulb went off in my head. Henry had never had a true laryngeal cleft. He had always had severe reflux, and aspiration. His airway was inflamed, his abdomen was distended, His entire GUT was inflamed. The GI doctor told me to try an elimination diet, to start him on NEOCATE for a few weeks and then slowly add foods back in to try to figure out what foods were causing his symptoms. We tried NEOCATE but by the third day his belly was swollen and hard and he was crying and in so much pain. I decided to stop the NEOCATE, no matter how hypoallergenic it supposedly was, it was hurting my baby! I modified my homemade G-tube formula and took out all the high allergen foods from his diet. Within several days all of the aspiration issues resolved. He still could not drink clear liquids, but after six months on an elimination diet void of gluten, wheat, and corn, I was slowly able to wean the thickening agent out of Henry's drinks. One month after he turned two years old, he took his very first sip of water. He drank it, he didn't choke, he didn't cough, he didn't turn blue. And that was it, he wasn't aspirating anymore.<br /><br />The final piece was Henry was STILL having diarrhea and he was not growing. For several months I had been reading about a specialized treatment called GAPS, a diet designed to HEAL and SEAL the gut. When I read the book, I knew this was the missing piece to our puzzle. Though I was afraid to eliminate the small amount of food Henry was eating I was determined to actually heal my son, once and for all. After all we had been through what could I have to loose? So we started our GAPS journey. The rest is history. Literally. The only reminder of the old days, is a small scar where Henry's G-tube used to be. If you want to find our more about GAPS please check out the link on the right side of my page and be sure to join GAPS kids for support. </div>
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-76913919356158992512012-12-03T21:27:00.000-07:002012-12-03T21:50:42.559-07:00Mom, can I talk to you . . . Alone?<div dir="ltr" style="text-align: left;" trbidi="on">
Tonight my 8 year old daughter came to me and said, "Mom, can I talk to you. . . Alone?" I felt a big lump in my throat, and I wondered what it is was she was going to say or ask or tell? She wanted to talk with me in my room; I guess so the other kids wouldn't be around. She laid on my bed and I laid next to her, and in moments we were like two kids at a slumber party; her legs up in the air, crossed and wiggling as she started smiling and blushing and talking to me about everything under the sun. I watched her animated little face, her long braided hair that flows down to the middle of her back, her teeth with braces decorated with the pattern of Christmas cheer. I listened to every word she was saying but my mind was racing back to a time that now feels so long ago; and yet as if it was only a moment ago. That first time I held her little body in my arms, that first long night without sleep, that first night I brought her home and felt the true heaviness of what had just happened to me. The realization as I held that little perfect person in my arms--I was MOM, and this beautiful little girl, was mine. I watched her little face talk about school and boys and ask me all sorts of innocent questions and all I could do was hold back these overwhelming tears. I never expected this immense love to overcome me, to change me into the person I am today. I never imagined she could be more beautiful today than she was that first day that I brought her home and how with each passing day I love her more and more. I never imagined how much it could hurt to love someone with this deep love, and how much worry and pain it would cause, and how I would fret about the smallest decisions about which school to send her too, or how much joy and laughter could be found in just eight short years. I sat with her and just soaked in the goodness of God to give me this gift and the gift of all my children; That He would trust someone like me with little ones, so precious. I prayed in my heart that I will take more moments like tonight. To just listen, and just BE with her in the moment. Rather than rushing to and fro, trying to keep up with the busy demands of life. I prayed that somehow God could slow down time so she could be with me forever, but I know that time is slipping away, so I prayed to make the most of it. I prayed I will cherish every moment of this childhood that is quickly passing. In eight more years she will a be a young woman. I prayed I could somehow model how to gracefully become a woman who fears and follows God. I prayed that she would know the DEEP LOVE that the Father has for her and be secure in that love. I watched her smiling beautiful face and prayed she would know how perfect she is exactly as she is right now, and that confidence she exudes now, would never be stolen from her heart. I thank God that she wants to talk to me right now, that she wants to tell me about her day and ask me her questions. After we were done talking she said to me, "Mom, I love you so much." I just soaked those words in, "I love you too" I said through tears. <br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com1tag:blogger.com,1999:blog-3004347384734158341.post-44777311910122368082012-11-29T22:25:00.000-07:002016-11-28T12:10:37.845-07:00Amazing Apple Cider Vinegar<div dir="ltr" style="text-align: left;" trbidi="on">
I never imagined my children would actually drink vinegar, nor did I imagine that they would ask me for it on nearly a daily basis! However, if I look around my home, a lot has changed over the past year since we've embraced GAPS. I never imagined I would have vegetables fermenting in my pantry, Kombucha tea always stocked in my home, or 24 hour broth in my crock pot daily. I never imagined I would be making all this fresh food and cooking all the time, but I never imagined the healing my son and my family would gain from GAPS.<br />
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For those of you new to GAPS some of these things might be foreign to you. I suspect that "<a href="http://bonzaiaphrodite.com/2010/05/how-to-grow-a-motherscoby-from-store-bought-kombucha/">Kombucha</a>" is likely not part of your regular vocabulary. (That link, by the way, is my FAVORITE site for brewing Kombucha and is sure to lead you to a successful homemade batch). Last week I accidentally, offered a taste of Kombucha to my sister-in-law. I think the name alone terrified her so I wont begin to imagine what she though about the brain-like SCOBY she saw floating in a glass jar in my refrigerator. Needless to say, I think she's a little freaked out right now. Hum, maybe that's why she's not returning my calls? So a little advice from personal experience: work slowly when telling your family and friends about your new found love of GAPS, some people need to be eased into the whole idea of drinking something that is actually ALIVE. For those of you new to this "health thing;" Don't worry, you'll learn the lingo, and in time, you too will have SCOBYS floating around your refrigerator and will be scaring your family members as well. I might come back to the Kombucha info later, I got a little side tracked. Today I want to talk about something awesome and easy to come by: Apple Cider Vinegar. Though not a particular part of GAPS, Apple Cider Vinegar has had it's place in healing my son and my family, so I'd like to share some interesting health aspects of this simple concoction. <br />
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When I talk about Apple cider Vinegar I'm talking about Bragg's Apple Cider vinegar. There is a difference, and you need to know what that is. Bragg's is made with the MOTHER, which is similar to the familiar Kombucha SCOBY. SCOBY simply stands for Symbiotic Culture Of Bacteria and Yeast. See, I actually had a purpose for bringing it up earlier, besides just freaking everyone out. It is LIVING thing that gives the Cider it's powerful healing potential, and that's why you need Apple Cider with THE MOTHER! <br />
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Here's a quote from the Bragg Website: " Natural (undistilled) organic, raw <a href="http://bragg.com/products/acv.html">ACV</a> can really be called one of Mother Nature's most perfect foods. It is made from fresh, crushed apples which are then allowed to mature naturally in wooden barrels, as wood seems to "boost" the natural fermentation. Natural <a href="http://bragg.com/products/acv.html">ACV</a> should be rich, brownish color and if held to the light you might see a tiny formation of "cobweb-like" substances that we call the "mother." Usually some "mother" will show in the bottom of the <a href="http://bragg.com/products/acv.html">ACV</a> bottle the more it ages. It never needs refrigeration. You can also save some "mother" and transfer it to work in other natural vinegars."<br />
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You can't have the same healing affect by drinking white distilled vinegar which has been processed and devoid of all nutrients. Apple Cider Vinegar has amazing healing properties and helps heal inflammation in the body and also helps with reflux as we have seen with Henry as well as with my own mother, (not to be confused with THE MOTHER) who had pretty severe reflux and arthritis herself. If you are interested in finding out more details of all the aliments that ACV can heal I would suggest reading Patricia Bragg's Book on Apple cider vinegar, you can find the Bragg's Apple Cider Vinegar at your local health food store or order it online. <br />
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While I am promoting Apple Cider Vinegar, I don't promote the vegetarian diet that the Bragg family lives by. The best way to have healing from ACV is to take it daily. We make a big batch and drink it each day, my son likes it warm and calls it "tea."<br />
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Basic Recipe<br />
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1/2 Gallon Distilled water<br />
1/2 Cup ACV<br />
1/2 Cup Honey <br />
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Warm up the1 cup of the water and dissolve the honey and then mix into a container with remain water and ACV. Drink at least 8 oz daily. <br />
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ACV does amazing things for the joints and bones and prevents and heals arthritis and eliminates stiffness from the body. It contains many enzymes and minerals as well as "potassium, phosphorus, natural organic fluorine, silicon, trace minerals and pectin as well as many other powerful nutrients!" (<a href="http://bragg.com/books/acv_excerpt.html">Bragg's website</a>).<br />
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It boosts the immune system and destroys germs. People clean with vinegar right? At the first sign of any cold symptoms we all start drinking our ACV more regularly. If we ever have a sore throat, we gargle with it--you would not believe the relief it gives to a sore throat or the things that it draws out of your throat that you end up spiting out that you didn't realize were back there! Yuck! <br />
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It is also a powerful healer of sinus infections. I use one tsp of ACV to 8oz of water and mix in my Netty pot. It will give you a healthy burn, but will draw out all sorts of junk from your sinus's. A few weeks ago the doctor told me I had an ear infection, I had a fever and she wrote me a script for an antibiotic. I never filled the prescription because I used my Netty pot with ACV and in 3 days my sinus were clear and my ear pain was gone. I mixed 1/8th of a tsp in my sons salt water solution (I didn't want it to burn as much for him) and put several drops in his nose the last time he had the start of a cold along with having him drink the ACV tea and he was better the next day. <br />
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Drinking ACV every day in the winter is a great way to prevent colds and other viruses. Also, if you have heart burn or a child with reflux I recommend making the recipe above and work up to 8oz a day. If you have arthritis, stiffness, aches and pains, or your children have "growing pains" the best solution is to take your daily ACV. <br />
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So the best way to see the power of ACV is to start taking it yourself. Let me know what you think!<br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com4tag:blogger.com,1999:blog-3004347384734158341.post-47390222896685633442012-09-12T14:52:00.000-06:002012-09-12T14:53:03.509-06:00Avoiding GAPS Intro Pitfalls<div dir="ltr" style="text-align: left;" trbidi="on">
So I admit my introduction to the GAPS diet didn't go as smoothly as I would like. Rather than wallow in self pity, I thought I would pick up the pieces and try to figure out where I failed and maybe by sharing a few tid-bits with you, I could save you from the same demise.<br />
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The GAPS introduction involves six stages and ends with the person being on full GAPS for at least one to two years. Myself and my family have been doing the FULL GAPS program for about ten months. I wrongly assumed that the introduction diet would be no big deal since I've been eating so healthy all these months. My youngest son went through the introduction back in November and has had amazing improvement in his GI symptoms as well as improvement in his growth and weight. I was wanting to start the intro because in spite of eating FULL GAPS for the past few months, I have developed a new stomach pain and GI upset and reflux and I'm not sure if the cause is dairy related or from years of chronically abusing myself with coffee and Ibuprofen. Probably both.<br />
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With no further adieu, here's what you can do to succeed on the intro:<br />
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1. <strong>Plan ahead.</strong> <br />
- Make your bone broths ahead of time and plenty of it, have the next batch going in the crock pot each day. Here's a link on making <a href="http://www.lovingourguts.com/gaps-basics-basic-bone-broth-tutorial-why-and-how-2/">broth</a><br />
- Have plenty of fresh veggies on hand that are intro worthy, that you can boil into your broth or soup. The first few days, you might not have a lot of energy to go shopping or cook so make it easy on yourself<br />
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<strong>2. DON'T GO TO ANY SOCIAL FUNCTIONS.</strong> Okay, so I am sort of joking, but if you do go to a Birthday party, again plan ahead and bring your broth and more broth and more meat and veggies. You will be smelling all those processed foods and getting hungry, you need to have your broth to sip on. This is where I failed, I decided I would just "FAST" during the event, a cousins birthday, which went all day and then into the evening. I started feeling really sick so I had some salad and meat, but on the intro you aren't supposed to eat RAW veggie yet. Oops. Not the worst of sins but just wasn't what I had planned to do.<br />
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<strong>4. Eat and drink broth often.</strong> This is also were I messed up. I think that some people really do require more veggies/carbs to feel okay. I could only stand feeling horrible for so long while trying to take care of and feed five other people in my family as well as work in the evenings. Eating more frequently keeps your blood sugar from crashing. Also, adding in the allowed veggies will also help prevent this, along with sipping on plenty of broth. Obviously if you have persistent diarrhea then you need to back off on vegetables as Dr. Natasha suggests in her book.<br />
5. <strong>You are going to experience some die off. </strong> Yep, even if you think you are a supper start healthy eater, be prepared to feel more tired, sleepy, achey than normal. I'm sure the more sugar and processed foods in your diet prior to the intro the worse you will feel. If you are able, I would suggest prior to the intro, that you limit your intake of even GAPS treats, honey and fruit so your body has time to get used to the lower sugar levels. The biggest issue that I struggled with was headaches, I think that eating frequently helps this as well as drinking plenty of liquids. If you normally drink coffee, cut it out several weeks before starting the intro or you will suffer.<br />
<strong>6. Your fluid needs will go up.</strong> This is some what related to eating more protein, but you really need to drink plenty of water, as much as your body is telling you that you need.<br />
<strong>7. Make your family do the intro with you.</strong> At first I thought it would be more difficult to have the entire family doing the intro but here is my new take on this. If you are only eating broth and soups, and are feeling tired and want to rest while your body detox's, do you REALLY want to be cooking all day for everyone else? Keep it simple, if you can't put everyone on the full intro diet, then just tell them you are making mostly soups for the next few days, it will be so much easier then having to stand up all day and cook for everyone when you feel like sleeping.<br />
<strong>8. Start on a weekend</strong> So you have someone at home to help you, I guess if all your kids are in school maybe during the week would be better for you so you can nap while they are gone!<br />
<strong>9. Get a massage or take a bath with epsome salts.</strong> I did a foot soak which really helped my headaches. I think you really need to pamper yourself if you can, take naps and go to bed early if you are able.<br />
<strong>10. Join a support group</strong> or enlist your friends or extended family to do this with you, the more the merrier!<br />
<strong>11. If you make a mistake, as I did, just try it again and this time be prepared!</strong> If your life is hectic with work and family, then just try a slower approach. Start by eliminating the processed foods in your home. Vow to not eat anything out of a box or package. Give up coffee, give up sugar. Then start making and drinking broth and probiotics (<a href="http://www.imexpectingtheunexpected.blogspot.com/2012/09/four-things-you-should-add-to-your-diet.html">see my post on the four things to try now</a>). I think even though I messed up on the intro it helped me to realized the things that have benefited me and that help my digestion. If you can add any one thing to your diet now, start with a good probiotic.<br />
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Are you doing the intro? Let me know your thoughts on what worked for you and helped you to succeed. </div>
Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-19159577882054066802012-09-12T13:36:00.001-06:002012-09-12T13:37:42.685-06:00Chocolate Cake with Cream Cheese Frosting<div dir="ltr" style="text-align: left;" trbidi="on">
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This is a delicious grain free chocolate cake that is super moist and sure to wow even your NON-GAPS friends. Enjoy.<br />
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3 cups almond flour<br />
1 can pumpkin (or equivalent of fresh pumpkin)<br />
6 Eggs<br />
2 tsp baking powder<br />
3/4 cup cocoa powder<br />
1/4 cup coconut oil or butter softened<br />
1 cup raw honey (optional)<br />
2 T almond butter<br />
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1. Preheat oven to 350<br />
2. Mix all ingredients and pour into two WELL greased 9 inch round cake pans <br />
3. Bake for 25-30 minutes, when tooth pick comes out clean it's done<br />
4. Let cool for 20 minutes before taking out of cake pans or they will not stack well.<br />
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<strong><u>Cream Cheese frosting (optional)</u></strong><br />
One 8oz package of cultured cream cheese or you could use homemade soured cream<br />
1 stick of butter, softened<br />
6 Tbs honey<br />
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Mix on low with mixer until smooth. After cake cools apply frosting between cake layers and on outside of cake. <br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-22007857692329742022012-09-10T23:02:00.001-06:002012-09-10T23:31:53.281-06:00Four things you should add to your diet now<div dir="ltr" style="text-align: left;" trbidi="on">
Maybe you are a little overwhelmed at the idea of drastically altering your diet right now. I understand, it's was a HUGE life change when we decided to take gluten out of our diets. I was overwhelmed at first, but with in a month or so we had adjusted and found a slew of alternatives to incorporate. Later we stopped eating all grains and all processed foods, when we started the GAPS diet last fall. I didn't throw away ALL the food in my pantry. Some things I gave away. I started by not repurchasing ANYTHING that came in a box. When the kids finished off the last few boxes of gluten free cereal we didn't purchase anymore from then on out. <br />
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Sometimes you have the ability to start slow. Other times, when given the diagnosis of pre-diabetes or Myasthenia Gravis, you are told by the doctor you MUST change your diet now, or else! Here are the four things that have impacted my health the most in the past eleven months and they are things you can start doing right now. <br />
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First, begin by taking a good probiotic. A good probiotic supplement will contain many different species of bacteria not just lactobacilli. After taking antibiotics your doctor might tell you to eat more yogurt. This is not enough, you need a mixture of strains and at least 8 billion bacterial cells per gram (Gut and Psychology Syndrome, Dr. Campbell-McBride,p. 251) Probiotics can also be taken in the form of probiotic foods such as sauerkraut and other fermented foods, kefir, yogurt and kombucha. You can start first by taking the liquid or juice from the fermented foods and then work your way up to having more probiotic foods in your diet daily. Probiotics are particularly helpful if you are suffering from either diarrhea or constipation. Both conditions indicate that there is an imbalance within your gut. <br />
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Secondly, make and drink bone broth. Try to make broth from organic grass fed animals or fish broth from freshly caught fish, red snapper makes the best broth, while fatty fish like salmon is more difficult to perfect. I make my broth first by roasting chicken in the oven with carrots, onion and garlic. The family eats it as a meal and then afterwards I leave the meat on the bones and add water to cover the chicken and add a Tbs of salt and let it cook for another 12-24 hours. If the broth has a layer of fat at the top and is gelatinous when cooled, you know that you've done it right. Some people also add a Tbs of vinegar when cooking the broth to draw out more nutrients from the bones. Try to take broth before every meal. If you are not used to eating fatty foods, you may be nauseated when you first drink the broth. Broth made from lamb and beef is particularly fatty and gelatinous and is more difficult to digest at first. Add some of the probiotic juice to every cup of broth after it has cooled a little, so to aid digestion. Sipping it rather than drinking it fast also helps it to be easier to tolerate. If you always have bone broth handy you will be ready at the first sneeze to start giving more of it to your family to help boost immunity or sooth a sick tummy. <br />
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Thirdly, add cod liver into your diet as a daily supplement. Dr. Natasha recommends fermented cod liver oil. I buy a flavored one from the health food store and haven't tried fermented yet. Cod liver oil contains vitamins A and D. Most of us are deficient in vitamin D. Low levels of vitamin D can lead to chronic pain (which I was having before I started supplementing), muscle weakness, poor ability to fight infections, mental illness, anxiety and a host of other problems. Vitamin A and D work together and Cod liver Oil contains both. Make sure which ever source you buy is pure and GMO free. Follow the dosing on the package. <br />
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Lastly, pure virgin coconut oil. Prior to starting GAPS I read a book called, Eat Fat, Loose Fat by Sally Fallon. I had been complaining to a friend of mine of how fatigued I constantly felt. She told me that coconut oil had been a miracle for her and to read the book. I purchased it and took one Tbs in a cup of tea. I was instantly sick, dizzy, and vomited! Again,I can't emphasize enough start SLOW, especially if you are used to a low fat diet. Coconut oil contains lauric acid which has antimicrobial properties that can help fight parasites, fungal infections, and viruses that cause food poisoning. Coconut oil contains medium-chain fatty acids (MCFAs) which are easily digested compared to other fats. Also, coconut oils structure does not change when it is heated as vegetable oils do. Therefore it is healthier and safer to cook with coconut oil or lard than with vegetable oils. Coconut oil can naturally lower your cholesterol, which has been exactly what it did for me. Prior to using it, I had never been able to increase my GOOD cholesterol (HDL), even with exercise and weight loss. After using it my numbers are right where they should be, I just had my blood work done last week to prove it! Coconut oil prior to meals causes satiety or the feeling of being more full and you are likely to eat less than you would had you not had it. Finally coconut oil gives me a rush of energy that I did not have prior to using it. In fact, I have to be careful to not take it too late in the day, or I will be up all night due to it's energy boosting effects. Coconut oil is amazing for the skin and hair. Put it on your hair and face before bed, I put it all over as it helps with dry skin. I also recommend it for diaper rash and eczema, as it has anti fungal properties and can help prevent yeast. Recently, Henry had what looked like cold sores or blisters on the outside of his lips, I put coconut oil on them for the past two days and it did spread and is starting to heal. Amazing!<br />
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Of all the dietary changes we've made, being consistent in taking <a href="http://organic3.com/gutpro/">probiotics</a>, bone broth, cod liver oil and coconut oil have given us the most bang for our buck. If I start to slack on any of these things, I feel it in my energy levels. In general I have noticed that our family has been less sick with viruses, stomach flu and respiratory illnesses since we've been more consistent especially with probiotics and cod liver oil. In my next post I'll discuss more on staying healthy this up coming winter! <br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0tag:blogger.com,1999:blog-3004347384734158341.post-28063446899166398912012-09-07T18:26:00.002-06:002012-09-07T21:39:42.280-06:00A Cure for FPIES? <div dir="ltr" style="text-align: left;" trbidi="on">
Doing the GAPS intro has definitely given me some insight into how Henry must have been feeling during those early days on GAPS. I remember him being very quiet, tired and taking a lot of naps the first few days. To be honest, I didn't blog during Henry's introduction to GAPS because I was afraid. I was afraid it wouldn't work, that he would loose more weight and I didn't want to blog about a failure. I was afraid to start GAPS in the first place. Henry's GI doctor had suggested an elimination diet and that I journal for a six weeks to try to determine what foods were causing Henry's FPIES. We had reached a point in his elimination diet where we weren't making any more progress. Henry seemed stable, but even though he was willing to eat some gluten free foods, he wasn't gaining weight. His diarrhea wasn't as profuse but it wasn't completely resolved either. His appetite was decreasing to the point that after a while it was a battle to just get him to take a few bites of any food, he even refused sweet foods like pancakes and gluten free donuts. <br />
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I had heard about GAPS but I honestly was so skeptical. Could I seriously take my already starving child and put him on just broth? Of course I hadn't read the GAPS book, so taking only pieces of information I assumed the entire idea was ludicrous. As a nurse, I even questioned the safety of such a diet on a young child. Yet when Henry stopped eating all together, broth seemed like something more nutritious than water or pedialyte, I KNEW I had to do something, and I had to do it fast. I read the GAPS book.<br />
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For those of you who are skeptical, I understand. I can tell you what GAPS is not. GAPS is not a FAD diet. Contrast to what I originally thought, it is not the ADKINS DIET, which was sold as a high protein diet for weight loss. The GAPS <strong>Introduction </strong>is not intended to be followed for life, it is a short term nutritional plan to help quickly heal and seal the gut lining. After reading GAPS and following the program, I doubt that you will ever be able to go back to eating a processed diet full of sugar and boxed foods, but you will not have to follow the strict introduction diet indefinately. It is suggested that the Full GAPS diet be adhered for six months to two years depending on what ailments you started with.. Now that we've been eating this way for ten months, the thought of eating processed foods at all makes me feel ill. <br />
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If your child is failure to thrive or has FOOD INTOLERANCE'S that are not true allergies, I can tell you that GAPS is the best answer. Will it be hard for you to change what you are doing and start GAPS? Yes. But FPIES was harder. Not having any safe foods to feed my child was much more difficult than putting him through the GAPS program. <br />
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What did your doctor tell you that FPIES was? Food Protein Induced Enterocolitis Syndrome? What is enterocolitis? Inflammation within the colon or because of the word "entero" the inflammation can be anywhere throughout the intestines or colon. You see this first hand when your child vomits instantly after eating, or has diarrhea for days after, blood in the stools, or cries in pain when eating a benign food that a normal child should be able to eat. This diagnosis of FPIES is sure to be a frustrating one. If Food Proteins are causing this Enterocolitis in your child, what are you to do? Every food has protein in it! Some of you have tried the broken down protein formulas like Neocate. Sometimes this calms the body for a time, unfortunately my son and many other FPIES kids cannot tolerate such formulas. Why would a child react to even a hypoallergenic formula? Because the FOOD PROTEIN is not actually the problem. Your child's intestines, his or her gut is the problem. Something is wrong inside. The body tries to tell us, we put a food in, and the child instantly rejects it, either by vomiting, diarrhea or both. The reactions to the food can be violent.<br />
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Did you think about how the same thing happens when you have a stomach flu? Why is that? There is a virus lurking in the intestines, causing inflammation and for about 24-48 hours most of what you put in comes back up, this is the bodies way of protecting itself, it rejects food and sometimes liquids. Doctors call the stomach flu gastroenteritis. Interesting, that word sounds a lot like enterocolotis, that "itis" part also means inflammation. What do pediatricians suggest when you have the stomach flu? That you rest the gut, start with small sips of fluid and eventually add probiotics into the diet to help heal the gut lining which has been attacked by whatever virus you had. Sometimes after an acute gastroenteritis patients will develop an irritation of their stomachs that last for even a month after, it causes symptoms of reflux, heart burn and intolerance to certain foods? Interesting how similar this seems to FPIES, only it is more temporary. <br />
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FPIES is like living in a constant state of gastroenteritis or the stomach flu. Imagine the entire gut being inflammed all the time. Or imagine how you feel when you have the stomach flu. Do you feel like eating much of anything? Maybe you start to feel better so you try a bite of banana, instantly you have severe abdominal pain and then start vomiting. Now you NEVER want to try a banana again, or at least for a long time. Do you see how when you are in this state of inflammation NOTHING is easy to digest. The food isn't the enemy, your GUT is. You have to heal the underlying inflammation and sickness inside you. Along with the inflammation inside of you, your body has been also been depleted of the good bacteria that normally keeps the gut in balance. Many things can cause this disruption in normal healthy gut flora, vomiting, diarrhea, the use of antibiotics which kill the good bacteria along with the bad, and other medications. Even doctors suggest that you try increasing probiotics after a bad case of the stomach flu. Why is this? Research has shown that probiotics help aid digestion, decrease diarrhea and reflux and they are important to over-all gastrointestinal health. <br />
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The GAPS diet is a nutritional program that is designed to first heal the gut, there is an introduction diet that is very strict, but so is an elimination diet or the limited diet you are now on because of FPIES. The beginning stages of GAPS are intended to rest the gut, you are giving only things that are easy for the inflammed stomach and intestine to digest. You avoid fiber, which as you can imagine is grainy and difficult to process when you have adhesion's and inflammation in your intestines. <br />
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There is a huge focus on increasing the amount of probiotics that you are taking. Not all probiotic supplements are the same. A good probiotic should have at least 8 billion of bacterial cells per gram and have a mixture of several strains not just lactobacilli. Many of our children have intolerance's to food so finding an allergy free probiotic can be a challenge. We have found one we love called <a href="http://organic3.com/">GUT PRO</a>, the entire family uses it and I would suggest it as a place to start. Probiotic foods can also be added into the diet to aid digestion. The GAPS program suggests starting with a little sauerkraut juice first added to broth and slowly increase. Bubbies brand makes both pickles and sauerkraut with live bacteria cultures.<br />
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Today I was speaking to FPIES, because it is on my heart and I know that many people are looking for hope. My son Henry had numerous endoscopes, bronchoscopies, stool studies, allergy testing and the like. We tried NEOCATE and could not tolerate it. I came to the GAPS diet desperate to heal my son, not just put a bandaid on a growing wound and wish it would go away on its own. The doctors ran out of ideas for his failure to thrive, even force feeding him through a G-tube didn't fix it, because he had so much diarrhea he wasn't absorbing any nutrients. <br />
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There is a reason that Doctors do not understand FPIES and do not know how to treat it. American medicine hasn't linked our diet to disease. Some doctors understand a little bit of the connection, but not to the extent that is needed to help people with serious ailments. Once a Russian friend of mine told me that in her country she had never gone to a doctor who didn't first ask her, what is your diet like? I found this interesting that other cultures look at the WHOLE person, the diet, the enviroment ect. Of course there are many enviromental issues that go into how our food is processed today, including mass production, GMO foods, hormones added to foods, and antibiotics. Also, we are exposed to numerous chemicals and toxins in our every day enviroment that we aren't even aware of, her is a short film about the<a href="http://www.care2.com/greenliving/unacceptable-levels-80000-chemicals-in-our-lives-video.html"> chemicals</a> in our daily lives. <br />
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Of date, there are no medications to specific to treat FPIES, although I believe they will try steroids in the future, because this is the way that medicine deals with inflammation in the body. The only problem is that steroids have numerous side effects and actually decrease the good bacteria in the gut, encourage the growth of Candida Albacans or yeast, and decrease the bodies immune system and natural ability to fight disease. Doctors hope you will grow out of FPIES but they don't understand why it is occurring in so many children. <br />
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I find it interesting that most of us mothers of children with FPIES also have issues with our guts, either IBS, celiac, thyroid disease, PCOS, or various other autoimmune diseases. Is it any wonder that we passed down unhealthy GI tract to our babies? Also, due to many of Henry's early issues he spent his infant days on many antibiotics, steroids and breathing treatments, which though temporarily helped his symptoms, I believe damaged his gut further by upsetting the balance of good bacteria in his gut and lead to further inflammation.<br />
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Today the only evidence of Henry's past struggles with FPIES is a tiny scare on his belly, which he thinks is a second belly button. It is the scar left from the G-tube, and it reminds me that all the efforts I made to find an answer finally paid off, that my prayers were answered and God lead me to find the GAPS program. I can hear the skeptics calling out? My kid is so sick, you have no idea what I'm going through. You are right, I have not walked in your shoes. But my son was very sick and I was once told that he may never be able to eat like a normal child. I can hear the exhausted mothers saying. "It's too hard, I just can't do one more thing right now." <br />
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I know it's hard. But you can do it, one step at a time. If you can't do the introduction diet right now, here are a few suggestions.<br />
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Read the book on GAPS, arm yourself with some information, even if you don't do the full program you will learn about foods that can help heal and rest the gut.<br />
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Start your child on a probiotic, find a good one like I suggested above.<br />
If you can't do the intro right now, try to just start by going gluten free and getting started on an elimination diet first if you aren't already and then try to go to the FULL GAPS diet which is less restrictive.<br />
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For FPIES, I believe if you really want to have full remission of symptoms and the ability to eat more variety of foods the GAPS Introduction and going through the stages is necessary to allow the gut to have a rest and to heal.<br />
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Is there a cure for FPIES? For us GAPS was that cure. I am happy to report that my son can tolerate many of the foods he could never eat before, he can tolerate milk in all it's forms now which previously caused vomiting, diarrhea/sometimes with blood, and becoming limp and lifeless. 'We've only been on GAPS for ten months. Only a few months after starting GAPS my son was slowly gaining weight for the first time ever in his life and was not having reflux or chronic diarrhea as he had prior. Please feel free to contact me with any questions and be sure to check out the GAP kids link.</div>
Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com11tag:blogger.com,1999:blog-3004347384734158341.post-77981763108934276772012-09-06T13:46:00.000-06:002012-09-06T14:32:24.049-06:00GAPS Intro: Day One Here I go!<div dir="ltr" style="text-align: left;" trbidi="on">
Last Novemember we started little Henry on the GAPS diet. At that time he was considered failure to thrive, he weighed just a little over 20 lbs at 30 months old. In an effort to help Henry heal his issues with chronic aspiration, difficulty swallowing, chronic diarrhea, lack of growth, reflux and asthma like symptoms; I put the entire family on a gluten-free-dairy-free diet for close to a year before we even discoverd GAPS. <br />
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The GAPS Diet is based on Dr. Natasha Campbell-McBride's book Gut and Psychology Syndrome. The purpose of the introduction Diet? In her own words "To heal and seal the gut lining quickly." I personally like the words "quickly." This of course can mean different things to different people. She mentions that most people will need about two years to heal their body, some more, some less. Many people come to GAPS with a host of medical and or psychological problems. While others may only have simple digestive issues. I can't recommend more highly, that you begin by reading the <a href="http://gaps.me/">book</a>, no matter what your situation. The book will help you to understand the basis behind the diet and why. I personally feel that no matter where you fall in the spectrum of chronic issues or if you feel you are in optimum health, you can still benefit from the diet and the principles Dr. Natasha teaches about having a healthy gut. She discusses how chronic health issues, autoimmune diseases, autism, celiac, seizures, OCD, schizophrenia and basically all disease originates in the gut. If you can heal your gut, you can heal your body. <br />
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Last November, we put Henry on the introduction diet and went through all the stages with him until just a few months ago he was able to "graduate" to the FULL GAPS diet it. Eleven months later Henry has gained four pounds and he has grown several inches in height. He can eat many foods that he could not tolerate prior to GAPS including dairy, which used to cause him to become very sick. This included abdominal pain, vomiting and having days of diarrhea sometimes with flecks of blood and weakness afterwards. I am AMAZED at the healing that has transpired in my son due to his progress on the diet. The rest of my family remains on the FULL GAPS diet which allows for most fruits and vegetables but is free of grains, starchy vegetables and most beans except white beans, lentils and green beans. Our family hasn't tried lentils yet.<br />
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I didn't personally do the GAPS Introduction Diet because I felt that I couldn't handle my body detoxing while I was trying to start Henry on the Intro. Everything GAPS was so new to me at the time and I felt really overwhelmed as I started the diet for him. I felt that I needed to have the energy to cook for him and so I just started eating the full GAPS diet which is less restrictive. Over the coarse of the past few months, just doing full GAPS I have improvements in some of my symptoms which included abominal pain, body aches and fatigue. <br />
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Prior to beginning GAPS I was dealing with what I thought was" chronic care giver fatigue". I don't know if that is the official terminology, but that's what I call it! You mom's know what I'm talking about, this is the fatigue that comes from taking care of a sick child night and day. It is the fatigue that comes with fighting what feels like a loosing battle when doctors run gamuts of tests and tell you they have no idea what is wrong with your child and they aren't sure if they can ever fix it. It was the fatigue of me working night shifts and trying to also take care of a sick child and three other children; at the time my husband was unemployed and then under-employed for almost two years during the most difficult time of Henry's illness. Naturalpaths like to call this adrenal fatigue. The adrenal glands are responsible for your "fight or flight" hormones. News flash, you aren't supposed to LIVE in fight or flight mode for years at a time! Warning: If you do, you drain your body of certain hormones, you end up with chronic fatigue or adrenal insufficiency. Eventually your body just says: I've had enough. Most days I was so tired I wanted to just sit around and do nothing. Note: working nights shifts doesn't help this any. I felt like I had constant brain fog. I started to use caffeine as a way to stay awake, the only problem was I had to keep drinking it all day to stay awake. Then I couldn't sleep at night. I KNEW I was addicted to caffeine, but I couldn't give it up--wait, isn't that the definition of an addiction? Also, for the past several years I had this horrible abdominal pain on the right side under my ribs. Sometimes it would be associated with nausea, bloating and feeling like I couldn't eat for hours. I had every test run because it really seemed like my gal bladder, but everything came back negative. Then I started just feeling like my bones ached ALL the time, I started to feel like an old woman and I am only thirty-two. Some days it hurt to walk. I knew that I needed to exercise but I was having too much pain and I was too tired to imagine even trying.<br />
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Like every other mother, I pushed my own health aside and focused on my children. A few months ago, with Henry finally feeling better on GAPS I decided to have my labs drawn. I found out that my vitamin D levels were extremely low. I'm happy to report after just a few weeks of being on a vitamin D supplement, the fatigue improved, the bone pain and body aches resolved. Man that vitamin D is important for a lot of thing! I also felt like prior to starting the vitamin D supplement I was feeling anxious and also easily frustrated, that too went away after supplementing. <br />
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So now that Henry is on the Full GAPS Diet and GAPS itself is a regular routine in our home. I'm ready to take the plunge into the GAPS INTRO. Remember how I mentioned that I WAS addicted to caffeine? I gave it up about a month ago. COLD TURKEY. I did the unthinkable. I stopped drinking it one day. Not because I wanted too, but because I had too. Even though I've been on FULL GAPS for ten months, I never had given up coffee, I was drinking a pretty strong brew, and almost a pot a day! Suddenly one day after drinking it, I started having severe abdominal pain and nausea and the chills. Not sure what it was but, every time I drank it I would feel this way. I assumed I must have burnt a hole into my stomach from drinking so much coffee, so I quit. With the last major hurdle out of the way, I was ready to begin the GAPS INTRO.<br />
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So hear I am, I started it today, I'm ready to finally take the time to heal my gut once and for all. Have I been avoiding the intro? Of course, I am so scared of detox and more fatigue! Only this time, I KNOW what's around the corner; because I put my son on the intro and there is an amazing difference in his health today. What's the secret thing that Henry and I share that I like to pretend isn't happening because I'm so used to my body being ill? Every day of my life for as long as I can remember I've had cramping followed by diarrhea several times a day. I always attributed it to "lactose" intolerance. On the FULL GAPS diet, the bloating and pain has significantly decreased. But I still have the runs, more often than I'd like to admit. I'm just used to it. But I know this isn't normal. Much of my fatigue, bloating and stomach pain has improved on Full GAPS, but I still have reflux and pain from time to time that I would like to get rid of once and for all. <br />
<br />
So here I am, FINALLY trying to take a step in the direction of taking care of myself, so I can hopefully be healthy long term and have the energy to take care of my family. Today is DAY one of the intro and it looked like this:<br />
<br />
<strong>Breakfast</strong><br />
Took my GUT PRO pro-biotic powder with water<br />
Drank my chicken broth and had some grass feed beef that I had cooked for over 24 hours in my beef meat broth, mixed in my homemade pickle juice for a good pro-biotic source, you can also try kraut juice, and if you can't make your own check out Bubbies! .<br />
Had my cod liver oil--not fermented, gonna have to work up to that--I know it's the best kind!<br />
Snack: Drank my <a href="http://bonzaiaphrodite.com/2010/05/how-to-grow-a-motherscoby-from-store-bought-kombucha/">Kombucha</a>, probably not recommended for the intro for kids, but I've been drinking it for a long time and it really sooths my stomach, it has an affect much like apple cider vinegar for me as far as aiding digestion. I LOVE Kombucha and might have to post about it some day, but for now check out the link to make your own.<br />
Lunch: Grassfed/beef meat broth, with a little whey mixed in<br />
Snack: Chicken broth with <a href="http://www.imexpectingtheunexpected.blogspot.com/search/label/homemade%20yogurt">whey</a> <br />
Dinner: Haven't had it yet but more of the same<br />
<br />
So as you can see, the preparation part is pretty easy. Just make a bunch of broth and be sure to have your probiotics, cod liver oil available before you start. <br />
<br />
<br />
How I'm feeling today:<br />
<br />
When I first started GAPS last November I felt REALLY nauseated when I drank broth, and then EXTREMELY tired. If you are doing the intro and are coming off a TRADITIONAL American diet, be prepared to feel a little off. Start out slow and be nice to yourself. Start the intro on a weekend so you can rest and have someone home to help out with the kids. Mixing the pro- biotic juice from sauerkraut really helps with the nausea and digestion. <br />
<br />
Thankfully, because I am used to eating good fats like coconut oil, lard, real butter, raw milk and cream I'm not feeling nauseated even drinking broth that has oil pooling at the top of it. What I do have is a headache brewing and I feel really sleepy and a little irritable, watch out family! I'm also extreemly thirsty and having to drink much more water than I normally would. I think I will go to bed early tonight, hum maybe I'll do a detox bath, that sounds relaxing.<br />
<br />
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Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com1tag:blogger.com,1999:blog-3004347384734158341.post-42672430208651444972012-07-26T23:49:00.000-06:002012-07-28T21:05:38.974-06:00When is Reflux normal? Or is it?<div dir="ltr" style="text-align: left;" trbidi="on">
<em>This is what I would have liked to read long ago when I was sitting for hours with my baby who screamed night and day wondering what was causing his pain. Or when I was wondering why my son was so sick but no one seemed to have any answers. This is for all of you who are not okay with the answer to just give your child medication, but hope to actually find out why your child is in so much pain? and ultimately a solution to the problem:</em> <br />
<br />
Reflux is something that the medical community recognizes as normal. We are told that every baby refluxes due to the natural looseness of the esophageal sphincter that tightens and corrects itself as we become more upright. As a parent with my first child I was told that some children are just colic, they just scream all the time. Yet , as a mother, I KNEW without a shadow of a doubt that my child was in pain. I was not satisfied with the diagnosis of COLIC, and neither should you be. Colic is a symptom, a symptom of discomfort and pain, NOT A DIAGNOSIS. How many adults with chronic abdominal pain would be okay with the diagnosis of colic? Oh, wait "irritable bowel," well that is another story! I believe that any practitioner who is satisfied with this explanation for constant crying in a infant, is both outdated in practice and without empathy. I hope and believe that someday in the future, the diagnosis of REFLUX would also be an outdated ideology as well. Many practitioners still believe that reflux is painless and usually does not cause complications, apparently none of them have every had heart burn. Nor have they held a screaming baby night after night watching him arch in pain, wanting to cry for him, wanting to make his pain go away.<br />
<br />
I believe that mild reflux, for example spiting up after burping or a little after a feed can be normal for some babies, if it does not bother them or interfere with weight gain. This mild symptom will improve as the child grows and starts to spend more time upright. However, just because a child is gaining weight, does not mean they do not have a problem with reflux or possibly a food intolerance. I think food intolerance and leaky gut should be explored in any child with persistent reflux. I know this is not as easy as just prescribing Prevacid, but antacids are not a long term solution to reflux in children. They are over prescribed, and in many cases don't appear to help and may even cause harm. Let me be clear, I am not criticizing ANY parent for putting their colicky baby on these medications, I did this as well. At the time, I did what I thought would help my child be free of pain. What I am saying is that in the long term, reflux medication did not address the main issue. Which was that Henry was reacting to the foods I was giving him. Constantly eating these offending foods was causing inflammation in his entire body and making him sick. I do not think that the type of reflux that Henry had was or is normal in any child. Severe reflux or GERD is a symptom that something is not right in the body. It should be a warning that something is unbalanced and adding medication might reduce acid, but it doesn't actually stop the child from refluxing. What you didn't know this? Many parents falsely believe that the medications will actually stop the child from refluxing. It is no wonder they are then surprised when their baby continues to spit up feed after feed. This is not how the medication works. The medicine is designed to reduce the acid content of of the stomach or stop acid from being produced. In my son's case even after trying Zantac and Prevacid he continued to reflux. I felt that his pain was actually worse, he cried more not less. I tried to explain this to the doctors. Yet even though the medication actually has abdominal pain listed as one of the MAIN side effects my doctors ignored what I said; "oh, just give it more time." Henry continued to reflux, and he continued to aspirate liquids into his lungs, The doctors take was "well at a least the fluids he was aspirating were not "acidic." What kind of logic is this? I guess it is an "as good as we can do," sort of mentality. We can't STOP the reflux, so lets just try to make it less painful. Unfortunately, this logic allowed for more and more damage to occur in my child's throat, as I continued to feed him the foods he wasn't tolerating. His aspiration became worse, he started having more and more difficulty breathing after just nursing. He was put on breathing treatments three times a day for wheezing episodes that occurred ONLY AFTER he would drink. When that didn't help they put him on steroids. Each time I reluctantly complied, even though I knew in my heart the medications were not helping. How could they? It was a vicious cycle. Every time he drank the fluid would come up, irritating his airway, the more inflamed it became, the more it spilled over into his lungs. I kept telling the doctors about how red his bottom looked, I knew he was in pain, inflamed from top to bottom--the question that no one could answer was why?<br />
<br />
I vividly remember the night Henry got his G-tube, and not fondly. I remember I could hardly look at the hole in his stomach; I felt a huge amount of guilt, and still do. It was as if I had put it there myself, because he was too young to choose. I chose between two terrible options, and I chose to save his lungs with the only option I was given. They told me it would stop the reflux, because they also tied his esophagus around his stomach: the Nissan wrap. They told me it would fix his aspiration. I thought it would stop his pain. I wish that surgery had been the answer. Unfortunately the main problem still was not addressed--why was Henry's reflux so unresponsive to medications? What was causing it? I cannot reverse the past. It is hard to relive those G-tube days, they were dark days indeed, in which I fought to keep my hope alive.<br />
<br />
If someone had known that Henry had FPIES, I don't believe he would have ever had the G-tube. Of course now that I know more about leaky gut and GAPS, I actually don't believe that FPIES is a TRUE diagnosis either but another SYMPTOM of the underlying problem of leaky gut and imbalanced flora, but that information will be for another post! It frustrates and enrages me that some doctors are okay to just TREAT the symptoms, with medication rather than discover the underlying cause. I believe this attitude lead to a delay in Henry's healing and possibly many unnecessary procedures. <br />
<br />
The truth is, even if the materials are not "acidic" they are still materials that should not be moving constantly up and down your esophagus. When liquid and food is constantly moving up and down it is going to irritate your throat, whether it is acidic or not. Likewise, when liquids that should never be in your lungs are going into your lungs, they are going to damage your lungs, because fluids should not be in your lungs whether they are acidic or not!<br />
<br />
I think that doctors are not asking the right questions and the right research is not being done. When I asked my doctors if I should change my diet, they told me it wouldn't make a difference. Yet at the same time one GI doctor told me to stop nursing and just put my child on formula because he obviously wasn't tolerating my breast milk. Now this guy actually had part of the idea right--he made an observation that my child wasn't tolerating my breast milk. Thank GOD I didn't follow his advice and stop breastfeeding, because I later found that my son couldn't even tolerate the most hypoallergenic of formula's NEOCATE, so we would have been in a lot of trouble. Yet, I find it interesting that this doctor believed in "intolerance" even to breast milk, but rather than exploring the "why" he wasn't tolerating it, he simply suggested I give up breastfeeding entirely. This to me is terrible practice. It would be like going to the shop because your car engine was making a funny noise. The mechanic tells you, your car has something wrong with it. "What?" you ask. "I don't know, but you better not drive it anymore." Seems ridiculous for the mechanic not to try to fix your car, but when it's your child no one seems to think twice about the lack of advice being given to concerned parents.<br />
<br />
<strong>All this being said, this is how I think maybe you could approach the situation if you've been told that your child has reflux. First ask yourself a few questions.</strong> <br />
<br />
1. Is there any family history of food allergies or intolerance's? Is there anything that upsets my stomach when I eat?<br />
2. What are your child's bowel movements like? Does he have diarrhea? Is there blood in it? or is he constipated?<br />
3. Is his belly often bloated, does he pass a lot of gas? Is he fussy? When?<br />
4. Does he get any rashes? Where? What do they look like?<br />
5. Does he have a diaper rash that is raw with red spots? (this is a common presentation of yeast and can also appear with food intolerance's)<br />
6. If your child is refluxing so severely that they are having asthma symptoms such as chronic cough, reoccurring ear infections or chronic sinus issues, wheezing-- make an appointment with a pulmonary doctor and and allergist. If the allergy testing comes up negative, insist that your child have a swallow study to rule out "aspiration," to see if the child is refluxing so badly that he is in hailing particles of fluid or food into his lungs<br />
7. Does your child seem to be in pain after eating certain foods, or if you are nursing do you notice him being more fussy, gassy, irritable after you ingest certain foods? Try to keep a journal to see if you notice a pattern. If your doctor wants to put your baby on reflux medications, consider first eliminating the most common food allergens: Dairy(casein, whey), wheat, nuts, gluten/wheat, corn if your child is still refluxing or having colic symptoms put yourself on the GAPS diet (see below)<br />
<br />
TRY to answer the above questions to best of your knowledge so you can present this information to your pediatrician, GI doctor, pulmonary doctor or nutritionist.<br />
<br />
<strong>Advice for you:</strong><br />
<br />
1. Do NOT STOP breastfeeding <br />
2. If you've already had to stop breastfeeding consider making a <a href="http://www.westonaprice.org/childrens-health/recipes-for-homemade-baby-formula#lbf">liver based homemade formula</a> ( if you choose to do this continue under close medical supervision to monitor growth and development)<br />
3. If you want to fix the underlying problem with your child's digestion and prevent future issues when starting solids, read the book <a href="http://gaps.me/preview/?page_id=34">GAPS</a> and follow this advice about adding solids to your babies diet <br />
4. Get your baby on a good pro biotic that is at least 10 billion CFU's, we use <a href="http://organic3.com/">GUT PRO</a> and if you are nursing take a good pro biotic too!<br />
5. If you are nursing start taking apple cider vinegar yourself--this helps with reflux and the underlying inflammation that you might be passing down to your baby. Make your own batch: 1/2 gallon water, 1/2 cup of honey, 1/2 cup ACV. warm the water by itself and then add the honey until it dissolves then after that mix in the rest of the water and ACV. <strong>NEVER GIVE YOUR BABY UNDER 1 YEAR OLD HONEY. </strong><br />
<br />
<strong><em>If your baby is under one year old</em> y<em>ou could try mixing small amounts of JUST (diluted ACV same amounts as above but without the honey) into your pumped breastmilk. Be prepared for him to make a face because it is strong tasting. start with a drop of diluted ACV in your pumped breast milk you can just drop it in his mouth when he is having symptoms or once in the morning and once at night, if your baby is under one you can make the mixture and start with 1/2 a tsp and work up.</em></strong><br />
<em>6. Never stop being your child's advocate, if you have a</em> gut feeling that something is NOT RIGHT, ask your doctor about it. Journal any new symptoms, try to keep tract of how often your baby seems fussy or when spiting up increases. Try to connect the dots and see if your baby reacts to the food you are eating. <br />
<br />
Before Henry got the G-tube I did an elimination diet and found out that he was very sensitive to my eating any milk, whey or casein products as well as soy while I was breastfeeding. I wish I had taken it a step further and eliminated wheat and gluten, but my doctors discouraged me from limiting my diet further. <br />
<br />
Remember that you are your child's best advocate. You are with your child all day and you know what a painful cry sounds like, you know the difference between just spiting up and vomiting. Trust your instincts and find a practitioner who will listen to you and help you. Find support from other mom's who know what you are going through. You can help your child be well and find the solutions to the problems rather than just medicating them. <br />
<br />
<br />
<em>Disclaimer: This is not intended to be medical advice, if your child has symptoms of severe reflux, GERD or aspiration, see your pediatrician, consult with your doctor before starting new treatments or nutritional programs. </em></div>Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com2tag:blogger.com,1999:blog-3004347384734158341.post-87540969636387957032012-07-08T21:24:00.000-06:002012-07-08T21:38:02.158-06:00For the LOVE of coconut!<div dir="ltr" style="text-align: left;" trbidi="on">
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In an effort to come up with something to satisfy a craving for chocolate yet avoid any processed sugar I came up with this little recipe in which I surprised even myself with how amazingly rich and delicious it was! </div>
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I think this will be a great alternative to Halloween treats, Easter candy or other situations when you need a healthy GAPS alternative. </div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: Broadway; font-size: 20pt; line-height: 115%; mso-bidi-font-size: 11.0pt;">Coconut Candy <o:p></o:p></span></b></div>
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<span style="font-size: large;"><sup><span style="mso-bidi-font-size: 11.0pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></sup><sup><span style="mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">2/4 </span></span></sup><sup><span style="color: black; font-family: "Copse","serif"; mso-bidi-font-size: 11.5pt;"><span style="mso-spacerun: yes;"> </span>Cup Artisana Raw coconut butter (softened) </span></sup><sup><span style="mso-bidi-font-size: 11.0pt;"><o:p></o:p></span></sup></span></div>
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<span style="font-size: large;"><sup><span style="color: black; font-family: "Copse","serif"; mso-bidi-font-size: 12.0pt;">1/2 </span></sup><sup><span style="color: black; font-family: "Copse","serif"; mso-bidi-font-size: 11.5pt;"><span style="mso-spacerun: yes;"> </span>Cup melted coconut oil</span></sup><sup><span style="mso-bidi-font-size: 11.0pt;"><o:p></o:p></span></sup></span></div>
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<span style="font-size: large;"><sup><span style="color: black; font-family: "Copse","serif"; mso-bidi-font-size: 11.5pt;">1/4 <span style="mso-spacerun: yes;"> </span>Cup honey</span></sup><sup><span style="mso-bidi-font-size: 11.0pt;"><o:p></o:p></span></sup></span></div>
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<sup><span style="color: black; font-family: "Copse","serif"; mso-bidi-font-size: 11.5pt;"><span style="font-size: large;">1/2 <span style="mso-spacerun: yes;"> </span>Cup of unsweetened cocoa powder<o:p></o:p></span></span></sup></div>
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<sup><span style="color: black; font-family: "Copse","serif"; mso-bidi-font-size: 11.5pt;"><span style="font-size: large;">1/4 <span style="mso-spacerun: yes;"> </span>Cup <span style="mso-spacerun: yes;"> </span>almond
butter<o:p></o:p></span></span></sup></div>
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<span style="color: black; font-family: "Copse","serif"; line-height: 115%;">1/2 <span style="mso-spacerun: yes;"> </span>Cup shredded
unsweetened coconut<o:p></o:p></span></div>
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<span style="color: black; font-family: "Copse","serif"; line-height: 115%;">Mix all ingredients well.<span style="mso-spacerun: yes;"> </span>Pour into unbleached muffin tins, put in
refrigerator for 2-3 hours until solid.<span style="mso-spacerun: yes;">
</span>Enjoy cold or freeze to save. </span></div>
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<span style="color: black; font-family: "Copse","serif"; font-size: 11.5pt; line-height: 115%;"><span style="font-size: small;">Try with peanut butter instead of almond butter
or experiment with peppermint or vanilla for an added twist. </span></span></div>
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<span style="color: black; font-family: "Copse","serif"; font-size: 11.5pt; line-height: 115%;"><span style="font-size: small;"><strong>Disclaimer</strong>: If you are not used to eating healthy fats and oils resist the temptation to eat more than one of these at a time, they are very rich! Coconut oil has amazing health benefits, but when I first started taking it, I could only tolerate small amounts at a time. I made these in regular muffin tins, but mini muffins tins would make the perfect size candy. </span></span></div>
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</div>Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com2tag:blogger.com,1999:blog-3004347384734158341.post-34242377877694176922012-07-01T06:25:00.000-06:002012-07-02T20:54:30.840-06:00Mom, we have 203 pets!<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
So said my eight-year-old daughter this evening, in reference to the fact
that we now are the proud owners of our twenty-month old labradoodle, two
domestic rats and now two-hundred red wriggler compost worms! Had you told me a
few years ago that I would be a worm farmer, I'm not sure I would have believed
you. But alas, this evening my four year old and I embarked upon a new journey
which involved creating a home for our kitchen food devouring new pets; which
we hope will aid our little urban garden with some natural pesticide free
compost in the upcoming months. <br />
<br />
Of course a lot has changed besides just Henry and his health. As our family
has been eating more fresh produce and organic foods, it has become blatantly
obvious that healthy food is expensive. I've been slowly trying to figure out
how to grow my own fresh produce, and I can tell you for certain that I do NOT
have a naturally green thumb, it is closer to yellow, which has often been the
color of my wilting house plants. <br />
<br />
My efforts started with a curiosity about how amy neighbors on
both sides of me seemly grew their flowers to robust proportions. Somehow all
this gardening I saw them doing became "catching." In an effort to make my front yard a little more presentable (compaired to theirs) I started adding little things at a time. The more I practiced it, the better I've
became, although I am still learning. The more I garden, the more I enjoyed it and wondered how I had not known about this hobby years before? It is so fun for the kids to watch
something start as a seed and then bloom into a plant and then something that
is actually edible. I think I am actually more facinated than the kids. I watch
in total amazement and school girl glee as I see that little sproutling pop up. It's such a miracle to me! Also it is shear proof of God's existence that anything I
plant actually grows into something wonderful!<br />
<br />
My "green" journey and conviction to "conserve" and take
care of the earth, began when my husband got laid off the same day that I found
out I was pregnant with Henry. It was then that I was forced to be more
thoughtful simply because I was trying to conserve money. In
doing so, I became more thoughtful and convicted that God commands us to take
care of the earth and its resources. In a desire to also be able to GIVE more,
I tried to find realistic ways to save more. I found switching to cloth diapers
and no longer purchasing paper towels helped that effort. <span style="mso-spacerun: yes;"> </span>I also tried to find more natural cleaning
products or made them my own. <br />
<br />
At the time, I wanted to start composting, but I didn't for two reasons. One, I was overwhelmed with Henry's G-tube and couldn't really take the time to
figure out the "how's" of composting. Secondly, I live in a town
house and wasn't sure that my neighbors would appreciate heaping piles of trash
within feet from their home. Yet, considering that they weren't picking up their
own pets droppings, it's possible they may not have noticed the smell of rotting
food that paled in comparison, but that is a different story entirely.<br />
<br />
So now that we are in a place of healing, the G-tube is gone and life is a
bit easier; it seems the proper time to purchase two-hundred worms and start a
farm in my basement! All joking aside, I've been researching the worm
composting idea for quite some time and it seems a great alternative to stinky
compost pile on my small patio. So here are some reasons to start your own bin
and I'm sure we'll come up with more as I share the progress of our worm’s
growth and development over the next few months. Be sure to check back for some
pictures! <br />
<br />
<strong><u>Reasons to start your own worm compost bin</u></strong><br />
<br />
1. The healthiest known compost is vermicompost, filled with all kinds of
nutrient rich soil and worm casings to help your plants thrive <br />
<br />
2. Worms are cool and kids dig them, literally<br />
<br />
3. Throw your kitchen scraps into a bin and watch them disappear, how cool
is that?<br />
<br />
4. Worm compost doesn't stink<br />
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5. You are reducing waste and doesn't that just make you feel great!<br />
<br />
6. Free compost--yes, we love things that are free!<br />
<br />
7. Worm composting is easy, the entire project took me about 20 minutes
including purchasing the worms--more to come on how to get it set up!<br />
<br />
8. You'll just want to peek in there and see what in the world they are
doing? What? Eating a pound of kitchen waste a week--amazing!<br />
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</div>Kristinahttp://www.blogger.com/profile/17067446970706507141noreply@blogger.com0