tag:blogger.com,1999:blog-79583497029261247002024-03-13T17:20:19.514-07:00Treasures in the Atticfinding gems in unlikely placeskeirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.comBlogger60125tag:blogger.com,1999:blog-7958349702926124700.post-71973353908729876902014-07-11T14:05:00.002-07:002014-07-11T14:12:50.052-07:002 Years!This weekend marks two years since Levi got out of the hospital with his sudden onset of seizures. In fact, today is the North Mankato Fun Days, which is exactly where we were when he had his second cluster of seizures that confirmed to us that something was, in fact, wrong. We ended that day with the beginning of a week long stay in Mayo Clinic in Rochester.<br />
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His prognosis has been up and down since that point. If you've followed along, you know the story. If you haven't, here's a brief synopsis - his prognosis has been up and down since that point. :) Yes, I'm being that brief, because I want to share our most recent situation.<br />
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In March of this year, Levi had a burst of language that, I believe, more than doubled his vocabulary. He was speaking in four and five word sentences all the time and even more complex sentences on occasion. Toward the beginning of May, we started to feel like he was maybe using fewer words than he had been. We, and his speech therapist thought maybe he was just having a bad week. Within less than three weeks he had lost so much language that his speech therapist told us to call his doctor right away. So, naturally, we called his doctor right away.<br />
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Dr Q (our pediatric neurologist) wanted Levi to come in for a 24 hour EEG as soon as possible. His concern - a type of seizure that happens during sleep and causes loss of language. So, the next day, we headed over to Mayo for a couple of nights. They didn't see what they were looking for so we decided to take the next step, an MRI, to see if there were any physical abnormalities in Levi's brain.<br />
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It took a few weeks to get in for the appointment. So, on June 30, we trekked back over to Mayo for an early morning MRI. They didn't see any physical abnormalities, which is good, but they did note that the coating on the nerves in his brain was not forming fast enough. This had us worried for a couple of days, but after consultations with several neurologists, it was decided that the delay in the coating was so minimal that it couldn't possibly be causing any problems. In fact, they seem to think the development of the nerve coating will catch up. So, we still had no answers as to WHY Levi has lost his language. This led Dr Q to recommend genetic studies and he sent us to the Developmental Pediatrician, Dr T.<br />
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This leads us to yesterday's appointment with Dr T. At this point, Levi has now lost at least 75%-80% of his language, probably more, but I'm trying to be upbeat. He doesn't SAY much of anything. He can point to things if you ask him where it is, but he can't say the words. (Please don't ask if he's just being stubborn. NO. He is not.) He actually tries to say the words, but it all comes out in jibberish, like a stroke victim. No he hasn't had a stroke, but his speech therapist and Dr T feel that it is possible that he could be having seizures or some kind of abnormal activity in the same part of his brain that would cause a stroke victim to do this. <br />
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So, yesterday's appointment with Dr T went something like this: I fill out the usual developmental survey. Dr T looks at the results. Dr T is very concerned about the results. Dr T actually leaves to get a neurologist in the room with us to help with a game plan. Dr T returns, unsuccessful. Dr T gets a nurse and barks out a list of orders to have her MAKE SURE we follow up with other doctors. Nurse says there's a six month wait list to see said other doctors. Dr T says to request that Levi be placed on the top of the waiting list as this is an urgent matter.<br />
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These other doctors will require much more testing. We're actually trying to get bumped ahead with some of our other appointments and testing as well. But, we're looking at the next months being full of trips to Mayo Clinic for lots more tests to find resolution for this loss of language. <br />
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At first, I was discouraged about the urgency of these tests. Both Dr Q and Dr T are adamant that we get Levi in for these tests as soon as possible so we don't risk his losing other skills. This is scary to me. But, my (nurse) sister put it this way - if Levi's doctors think it's urgent, it's because they think they can do something about it. If there wasn't any way to help him, they wouldn't be pushing so hard to get him tested right away. This is encouraging to me.<br />
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In the end, we're trusting that God has the perfect plan for my son. Though, he has very little language at three and a half years old, he is happy. He gets to see the world from a perspective that NO ONE ELSE will ever get to see it. He is beautifully and wonderfully made and I thank God for that.<br />
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Here is a song I wrote for my sweet boy while we stayed in the hospital for his EEG last month.<br />
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<u><iframe frameborder="no" height="166" scrolling="no" src="https://w.soundcloud.com/player/?url=https%3A//api.soundcloud.com/tracks/152852804&color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false" width="100%"></iframe></u><br />
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And a picture on the ferris wheel today. Thank you North Mankato Fun Days for offering free rides and food to our special needs community. It made for a happy day for so many!!<br />
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keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-2906665905977294932014-04-17T10:02:00.003-07:002014-04-17T10:02:59.834-07:00Seven YearsWhen I started this blog, it was because I needed a creative outlet. I shared my music, poetry, and random thoughts about life. Nearly two years ago, I found myself in a hospital room trying to text lengthy updates about Levi and his condition. That, obviously, didn't work very well and sparked the evolution of this blog. Since then, I've focused on Levi, his condition, and the effects it has had on our family. Today, though, I want to shift the focus, a bit, to my husband.<br />
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This week marks our seventh wedding anniversary, which is, in part, why I want to celebrate my husband. I say, 'in part', because I've wanted to do this for months now. I've just never gotten around to it and our anniversary gave me that extra oomph to get it done.<br />
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And now, the words: <br />
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Of all of the people on the face of the earth, I respect my husband the most. He is one of the most genuine, thoughtful, generous, and patient people I know. He SERVES his family. He works excruciatingly long hours and follows that, not by plopping down on the couch to play video games or watch sports like his stereotypical American counterparts; but rather he ends his long days (the ones that he doesn't work until midnight or later) by playing with our children, helping with the dishes, and rubbing <i>my</i> aching back. He helps with the little things like getting the kids out the door when it's time to leave or by preparing breakfast for us, on occasion, before he leaves for work, while we're still sleeping.<br />
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He is strong. Some jerks (Yes. Jerks.) might see what he does and say he's 'whipped'. On the contrary, there have been countless times that I have pleaded with him to stop and just sit down, but he, being the strong (stubborn) man that he is, insists on serving his family. He knows how to put his foot down. It's just that he serves us out of a quiet strength. He's not a William Wallace from "Braveheart" who runs in front of the masses and cries out in elaborate speech for the sake of a cause. He's the warrior directly behind William Wallace, who courageously fights at the front lines, setting the example of what it means to take a stand, not with words, but with action. He is that kind of strong.<br />
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He puts Christ first. He bases his decisions and actions on the Word of God. His strength and his service are prime examples of how he strives to be like Christ. He is passionate about seeing the glory of God heal and transform broken lives. He is steadfast in his faith and his relationship with God, Through everything we've gone through with Levi, he has turned his own broken heart over to God and been concerned more for me and our boys than for himself. <br />
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All of this together, and so much more, lend to my having the best husband I could possibly have. I could go on forever, but I don't want to make all of you other ladies out there feel <i>too</i> jealous. :) <br />
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Seven years! Seven incredible, beautiful, and sometimes difficult years! And no itch! That's not to say we haven't had our moments, but that's all they were - moments. We leave them at that. And, though the fiery romance can be interrupted with long shifts, poopy diapers, and snotty noses, it is through those very things that I have found an even deeper kind of love - respect. I am truly overwhelmed by the respect I have for my husband. It wells up inside of me and I just have to get it out!<br />
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Happy Anniversary Jeremiah Luntsford! I love you!</div>
keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-71221089676526060322014-03-31T19:59:00.001-07:002014-03-31T19:59:33.198-07:00My Hope<br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="background-color: white;">It's been a crazy couple of months since I last posted. Crazy and difficult. And good. I haven't posted before now because, honestly, I haven't had the heart to do it. We got some negative news about Levi a couple of months ago that kind of sent me into an emotional whirlwind and I just haven't been able to put it out there in the wide open web. Until now.</span></span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="background-color: white;">To be brief, in a matter of two weeks, he had two tests and several appointments that landed him with a worse developmental diagnosis than before. When he first had the seizures (a year and a half ago), he was assessed as functioning at about 30% behind. We had actually been hoping that he was catching up. Unfortunately, the tests show that he has actually fallen further behind and is now functioning closer to 40% under his age level. We're talking, he may not ever be able to be fully independent as an adult, behind. Even now, I can't come up with the words to describe how this impacted us. </span></span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="background-color: white;">The first couple of weeks were accompanied by several emotional break downs. </span></span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif;">At first, I couldn't tell anyone. I couldn't say it out loud. I didn't want it to be real. But, when I was finally able to share it, we found what an amazing support system we have. A few people came and prayed with us and each of us took a day of the week to fast for my boy. I don't know if you believe in prayer. I do. Along with a new listening therapy, that week started a burst of language for Levi. Since then, I would say he has almost doubled his vocabulary! He still has some communication blocks and many other difficulties, BUT, we're watching him progress quickly and I am hopeful for good news at his next appointments and with his future testing.</span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="background-color: white;">With what I've learned through all of this, I know that there's still a chance that the numbers haven't changed for the better. There have been so many sudden spurts of development and, so far, the numbers have only gone down. But, a good friend reminded me that my hope is not in how my son is performing. Rather, my hope is in Christ. It's easy to lose sight of that, but remembering it has completely changed the way I've been able to look at this situation.</span></span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="background-color: white;">I know that no matter what happens, my hope is found in the One who can use Levi, just as he is, to make a difference or if HE wants, He can change it all in a moment. I don't like the unknown. But rather than focus on what I don't know, I'm going to lean on what I do know - My Faithful Faithful God.</span></span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="background-color: white;">Here is a song that has helped to carry me to that place of trusting in Him without the borders of my own will and desire. </span></span></div>
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<br />keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-59345242329264111802013-11-21T15:34:00.002-08:002013-11-21T15:34:17.260-08:00Camelot<span style="background-color: white; font-family: 'Droid Sans', sans-serif; font-size: 16px; line-height: 22px;"><b>"This is the heart of Camelot, not these stones, not these timbers, these palaces and towers. Burn them all and Camelot lives on, because it lives in us." </b></span><br />
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<span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">Seek first His Kingdom - I've always seen this through a romantic lens. I visualize an entire volume of novels about a great King and his noblemen out to deliver mankind from the evil sorcerer who has cast a dark spell over all of the earth. I think of Camelot, beautiful, radiant Camelot and the line that I quoted above from the movie "First Knight". I picture myself, on the back of a swift horse, risking my life for the sake of the King and that glorious city that dwells on inside of us all.</span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;">And then, real life interrupts me. Epilepsy here, a broken collar bone there, fatigue, exhaustion, emotion.... and suddenly I can't seem to see the city any more. In fact, I can't seem to see beyond my own nose, or, particularly, my two boys and my husband. And the dishes - there are always dishes. </span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;">This week I've been distracted by medicine changes and break-through seizures (we think the stupid infantile spasms that cause Levi's developmental delay are back). Two weeks ago, it was Toby's broken collar bone. But, whether it's cooking dinner and paying the bills, a scraped up knee, or a broken bone, there's always something - something diverting my attention from the beauty I have dreamed of fighting for.</span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;">It's a situation that I can't change. I can't just make it all go away. It's so easy to start to think that I'm absolutely useless when it comes to giving my life for the sake of some great, invisible thing. How can I serve others when I feel that I barely have the strength to serve my own family?</span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;">This is where I've been. But, this week, in the midst of the stress and uncertainty of Levi's condition, God has reminded me of something. This mess of a situation that I'm in - epilepsy, autism testing, therapies, and even the dishes - is my small plot of earth in a magnificent Kingdom. So, I'm going to fight for that earth. I'm going to give everything I've got. It might just be a little at a time, but I'm taking what land I can get for now. </span><span style="font-family: Verdana, Arial, Helvetica, sans-serif;">And, then I'm going for more. </span><br />
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif;">Although poopy diapers and whining and fits aren't all that glorious, and even though I can't always see the city beyond my spot of land, </span><span style="font-family: Verdana, Arial, Helvetica, sans-serif;">my boys, my beautiful boys, epilepsy and all, are still a part of Camelot. And yes, the dishes too.</span><br />
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<span class="versenum" style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 0.75em; font-weight: bold; vertical-align: top;"> "</span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">But </span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">seek first </span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">His kingdom and His righteousness, and </span><span class="crossreference" style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-23316A" title="See cross-reference A">A</a>)"></span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">all these things will be </span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">added to you." -Matthew 6:33</span>keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com2tag:blogger.com,1999:blog-7958349702926124700.post-8934409144235317732013-08-05T13:07:00.003-07:002013-08-05T13:07:22.296-07:00InadequacyDo you other parents out there remember the feeling you had when you went home from the hospital with your first newborn baby? That foggy, sleep-deprived, surreal feeling where you ask yourself, "Now what? What do I do with this....person?" "What was I thinking bringing a human being into the world?! I mean, really. A HUMAN BEING. I actually thought I was qualified to raise a healthy, emotionally stable person and release them into society! Am I crazy?!" That's at least how I felt. Completely inadequate. I can only imagine that most people feel that way at least once in their parenting lives.<br /><div>
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Today I'm feeling that same inadequacy. I'm not saying this to make anybody feel bad for me or write me an encouraging note on facebook. I'm saying this because I'm pretty sure I'm just a normal person who, at times, feels like I don't know the first thing about raising children. Am I crazy to think that all parents must go through this? I figure it's probably a bit more of a struggle with a special needs child, but no matter how hard the struggle, it's still there. We all face it in one way or another. We all have those moments when we don't know what our child needs and we feel really crappy about it, right?</div>
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Honestly, I'm thankful for my inadequacy. I would much rather feel inadequate than feel completely competent as a parent. It's those very inadequacies that remind me how big God really is. It's my weakness that reveals His strength in my life. It's the moments when I feel the least qualified that I know I can look to Him and find all that I need. I guess that's really why I'm writing this. I just needed to remind myself that I'm a person. I'm not perfect. And, I'm fine with that. The same goes for everybody else. It's ok to just be a person, inadequacies and all.</div>
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<span class="versenum" style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 0.75em; font-weight: bold; vertical-align: top;"> "</span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">And He has said to me, </span><span class="woj" style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">“My grace is sufficient for you, for <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-29032R" title="See cross-reference R">R</a>)"></span>power is perfected in weakness.”</span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;"> Most gladly, therefore, I will rather </span><span class="crossreference" style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-NASB-29032S" title="See cross-reference S">S</a>)"></span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">boast </span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px;">about my weaknesses, so that the power of Christ may dwell in me." 1Cor 12:9</span></div>
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keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-42865273209144156122013-07-19T12:52:00.000-07:002013-07-19T13:01:25.087-07:00What Can I Say?.... Part I - PerceptionLast week I wrote a <a href="http://keirastreasures.blogspot.com/2013/07/soap-box.html" target="_blank"><b>post</b> </a>about some of the things that well-meaning people can say that hurt or invalidate the parent of a special needs child. I had a large response from readers and many people asked, "Well, what <i>can </i>I say?" So, I'm going to attempt an answer to that question. But, considering the fact that every parent with a special needs child has different struggles and different personalities and ways they face those struggles, it's not going to be a simple answer. Different people need different things and react in different ways. But, I'm going to do my best to answer the question. It's definitely going to take more than one post, though.<br />
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I think the first step in approaching a parent of a special needs child is not what you say to them, but how you perceive them. If you have an accurate perception of them and what their life is like, you'll be more likely to say the right things. As one of these parents, one of my greatest insecurities is that people will think I'm overly obsessive with my child's needs or that I blow things way out of proportion and completely find my identity in his disabilities. I know this is a valid concern because people have treated me like I do this, and even said things to confirm that they feel that way. Not only that, but I used to have those same thoughts about others. I'm not trying to make anyone feel guilty for feeling this way, but I do want to explain why we parent's of children with special needs come across as being so consumed with our child's needs.</div>
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It's kind of a simple answer. If we come across as though we're consumed by our child's needs, it's because our lives <i>are</i> completely consumed by our child's needs. Our thoughts must constantly be centered on their safety. Our schedules revolve around their therapies and doctor appointments. Our emotions are tied to their every up and down. Here's the example of my life. And, please note, Levi's needs are minimal in comparison to so many other children.</div>
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First, my mind is consumed with his behavior and safety. It HAS to be. Levi is very high maintenance - I'm constantly having to stop what I'm doing to pull him off of some piece of furniture, to take some choking hazard out of his mouth, to tuck his penis back into his diaper so he doesn't pee on the floor, or to cover his eyes and make sure he's just spacing out and not having a focal seizure. Like I posted <a href="http://keirastreasures.blogspot.com/2013/07/one-year-and-some-venting.html" target="_blank"><b>here</b></a>, he has no understanding of boundaries in public or outside. We cannot go somewhere without holding him or having him strapped into a stroller or he WILL run off immediately. Ironically enough, I just had to stop writing and go pull him out of a window sill that he had somehow managed to climb into. Even if he's asleep, I have to be on alert. If I'm unaware when he wakes up from his nap, the trouble he could get into is endless. Yes, many of those things are normal things that you have to do for a child, but that's when they're like a year old. The average one year old grows out of that behavior. Levi is going on three and I'm not seeing an end in sight. It's exhausting and frustrating and yes, it's all I think about, because if I don't, he will get hurt. I don't have a choice.</div>
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Next, our schedules are consumed. My entire life revolves around Levi's strict schedule. Levi doesn't sleep well at night so we are supposed to make him wake and sleep at the same time every day. EVERY DAY. No exceptions. This is so hard to do. I put off starting this rigorous sleep schedule for weeks because I knew it would seriously cramp my already limited social life. When he <i>is</i> awake, the time that I could spend getting things done or going out or playing with my boys is spent on therapies. He has four or more therapies a week as well as scheduled respite time where I frequently have to take him somewhere just so I can go back home and clean my house without interruption. Respite is nice, but it's stressful to have to take my kid somewhere just to get a little work done. It adds an entire step to the process.<br />
I'm also supposed to work with him on his therapies in my own limited time every day. Honestly, this rarely happens. After his sleep schedule and his therapies, I've still got dishes to wash and laundry to fold and dinner to cook, not to mention my floors and bathrooms that rarely get cleaned. I don't have enough time in my day to work with him in the ways that he needs. Then there's the paper work. I can not tell you how many endless hours I have spent filling out intake forms and applications for therapies and services and calling doctors offices and hospitals to make sure we've got the bills and appointments figured out. On more than one occasion, I have spent all of my available time for two to three weeks straight (no exaggerations) sitting at the computer, writing emails and filling out forms. It is never-ending. And then, considering that he is a high maintenance child, I'm constantly interrupted and have a very hard time getting things done. My house is a mess, my laundry is dirty, and my Toby, my sweet sweet Toby doesn't get the attention he so needs to have from his mommy and daddy. That I can't keep up with my housework and that I rarely get a chance to work with Levi and that Toby gets so little attention makes me feel inadequate as a parent. I can only imagine that most parents with special needs children struggle with this same feeling of inadequacy.</div>
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Finally, there's the emotional side of it. First, there's the aspect of having to let go of what we thought life was going to look like. We have to give up dreams and ambitions that we wouldn't have to give up for a "normal" child. In fact, our entire idea of what life would look like is gone. I talked about that <a href="http://keirastreasures.blogspot.com/2013/05/welcome-to-holland.html" target="_blank"><b>here</b></a>. The emotions that a parent goes through with this are very similar to the emotions that people go through with death. I'm not trying to compare disabilities with the death of a child. But, in a <b>small</b> way, we did lose a child - the child we had no longer exists. It's painful and just like in death, that pain may never completely go away. </div>
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After working through the emotions of loss, we still have the day to day emotions of seeing how our child progresses. Every parents emotions are connected to their child's well-being. And, the well-being of most of the special needs children that I've known varies from day to day, week to week and month to month. For instance, six months ago I was so excited that Levi was learning new words on a daily basis. His weekly visit from his teacher, though, would vary. Sometimes the visit would go well and sometimes it wouldn't. But, overall, I thought he was really gaining some ground and had high hopes that he would catch up completely. Then we went to see Dr. Schultz, who said that even though Levi was learning new words, he wasn't growing as quickly in communication. The gap had actually grown between his language and his communication inciting concern for autism (emotions down). The autism test was negative! (emotions up) But, the gap was still growing and if it keeps on growing we may have to do autism testing again later (emotions not knowing what to do). And then Dr. Q told us about the possibility of things getting much worse (just plain horrifying).</div>
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As a parent of a child with special needs, I've been through a gamut of emotions that I had never experienced before - fear, hope, insecurity, inadequacy, stress, depression, anxiety,uncertainty, and some emotions that I can't seem to put my finger on. The exhaustion doesn't help. Like I said, Levi doesn't sleep well. So, I don't sleep well. Some months are literally like having a newborn in the house waking every few hours. Being exhausted and facing the stress and emotions that come with a special needs child is not a good combination.</div>
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So, if you find yourself in a conversation with a parent of a child with special needs, and you feel like they only ever talk about their "special" "needy" child, take a look at your own life. What do you talk about? More than likely your conversations revolve around your job and your children and what's going on in your daily life. The thing is, with us, special needs is our job, it is our child(ren), and it encompasses everything that goes on in our daily lives. We don't get to separate our lives into different sections. It's all one big ball of special needs. So, of course it's what we talk about. We're not looking for pity. It's just all we know. Understanding that, and not judging us for it, is the first step to approaching us in a way that won't hurt us.</div>
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keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-80455675698907594702013-07-13T22:33:00.002-07:002013-07-13T22:33:47.777-07:00Soap BoxSo. I try really hard to keep a positive outlook. I try not to complain and I try to look at the bright side of everything that's happened with my Levi. But, after nearly a year of being positive and upbeat, I'm going to get on a little soap box. I think I've earned it, and not just because of what I've been through, but also because I used to think (and probably say) the same things that I am being told on a regular basis. <br />
To start with, if you've said some of the things I'm getting ready to complain about, I don't want you to feel bad. You're not the only one who's said it to me. And, like I mentioned before, I have, myself, more than likely, at least thought it about someone else. Secondly, I'm not sharing these thoughts out of offense or to defend myself or to make anybody feel guilty. That's the last thing I'm interested in. I really just want people to at least know what not to say to the parents of a child with special needs.<br />
First. Vocabulary doesn't equal communication. Just because a child can say or mimic some words does not mean he's at age level for his communication. Levi has been taking off on the vocab side of things. He's able to tell us when he wants a drink and when he wants to go play outside as well as several other 'I want' and 'I go' phrases. Thank You, Jesus!! It's exciting! But, at two and a half, he still doesn't comprehend "come here" or "where's the dog" or "get the block" or most commands for that matter. He still can't tell me when he's in pain or doesn't feel well. "I want" and "I go" are a huge accomplishment, but it can only get him so far. So, please don't tell me that he's at the same level for language (or anything else for that matter) as other kids his age. It doesn't make me feel better. It makes me feel like you think I'm blowing things out of proportion. The truth is, I'm not. Many professional language/development tests and experts have confirmed this point.<br />
Here's another example of what not to say: "He doesn't seem too far behind developmentally. He <i>is</i> really big for his age,though, isn't he?" No. He's average sized for his age. What you're seeing is a two and a half year old acting like a twenty month old. Yes, he seems big for the way he's acting, but it's not because he's above average in size, it's because he's below average in development. He's supposed to be that size; it's just that he's supposed to behave that size too. When you know a child is developmentally delayed and you openly associate that with his size and not his development, to the parent, you've just invalidated the struggles they and their child have gone through. When people say this to me, I feel like they're telling me, "No, Keira, you don't know what you're talking about. He's just fine."<br />
Which leads to another one: "He'll be fine. You know that, right? He'll be just fine." No. I don't <i>know</i> that. He could be fine, but he might not. In fact, there's a chance that he could be <i>really </i>not fine. The thing is, there are plenty of people out there who's kids are not fine. There are children who are completely mentally handicapped, kids who die of cancer, and kids who will need constant care for the rest of their lives. God does not love me or Levi more than He loves them. If He allows it for one child, I cannot say that He won't allow it for mine. I hope against hope that He completely heals my son. I have faith that He can and will. But, no. I don't <i>know</i> that He will. Faith and knowing are two different things. I mean, seriously, kids aren't handicapped or terminally ill because of their parents' lack of faith.<br />
Which brings me to: "Well, you just need to rebuke it," or "I just wouldn't accept it," or "You just plead the name of Jesus over him..." If anybody else tells me I just need to plead the name of Jesus over him, I might just go crazy. As though I'm not already doing that every single day. Say one of those things to me and you make me feel like you think I'm so stupid that I don't pray for my son or that I'm completely lacking the faith that I need for my son to be healed. Don't get me wrong. I want you to plead the name of Jesus over my son. PLEASE pray for him. But, the fact is that so far rebuking it, rejecting it and pleading Jesus' name hasn't caused it to go away <i>yet</i>, and it might not ever go away. In fact, there's a medical chance that it could get worse - way worse.<br />
Some people might take that last statement as a lack of faith on my part. But, let me tell you something I've learned about faith through all of this. It's one thing to believe that God can heal my child and to hope that He will. It's a whole other issue to know that instead, God could allow it to get worse and He would be just and glorified in doing so. You see, His ways are not my ways and His thoughts are high above my thoughts. If His plan doesn't involve Levi's healing from epilepsy and developmental delay, I have to have the faith to believe that that's the better plan. It takes so much more faith to want God to have His way, even if it means things get worse, than it does to believe that He can heal my son just because I said "in Jesus' name". Trust me. I've prayed Jesus' name over people and seen them healed. This takes way more faith.<br />
So, there you go. I have officially vented. If I was too harsh, I'm sorry. I've actually edited this post a lot because I don't want to upset anybody. But, people need to know that we have to be careful. Alot of the time that people have said these things to me they were trying to be encouraging, but they ended up invalidating or minimizing the situation I'm in. And that's why I have to share this post. I haven't written it out of frustration with a person or people. I've written this out of frustration with feeling like nobody really understands, which, even in the midst of many great friends, can be a very lonely place.keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com1tag:blogger.com,1999:blog-7958349702926124700.post-89508325626554168772013-07-13T21:59:00.001-07:002013-07-13T21:59:48.932-07:00One Year and Some VentingToday marks one year since we discovered Levi was having seizures so I figured I should write something. I want to write an overview of the past year, but I think I'll do that in a couple of days. I kind of need to vent some stress and writing here seems to help:<br />
Today has been a fairly good day, but an unusual one as far as schedule goes, so Levi's had the chance to be extra.... well.... Levi-y. We've been outside for much of the day, which is nice, but we've been with friends, which is also nice except that outside and Levi and friends don't mesh well unless he's strapped down, which for obvious reasons doesn't work for long. Levi wants to run free when we're outside and doesn't understand that staying close to Mom and Dad keeps him safe. I'm telling you, this kid has absolutely no comprehension of boundaries. If you take your eyes off of him for thirty seconds, he's either in the neighbors yard on his way out of town or he's trying to play with the fire. So, if we're outside, and we're letting him play, we have to follow him everywhere. This doesn't work well if we want to hang out with our friends.<br />
If we want to spend time with our friends outside, we have two options. Our first option is to hold Levi while he CONSTANTLY tries to break free, which is very difficult with a two-and-a-half-year-old-sized-body. Of course, this method is painful to the back and also includes a frustrated Levi crying in the ear of the parent because he just wants to get down and play. This makes it very difficult for said parent to participate in any kind of conversation with another adult. The second option, which is our usual choice, is that we take turns chasing and holding. I'll chase while Daddy talks to friends and then Daddy will chase while I talk to friends. Then we'll try to hold him with us so we can all talk. But, thirty to forty-five minutes of that gets to be exhausting and our endeavor to have quality time with friends just seems pointless. It's really frustrating. We're frequently asked, "What's wrong with Levi?" "Is he tired?", "Is he hungry?". No. This is Levi. This is a little glimpse of what our life looks like. It is like this LITERALLY every time we spend time with people, especially outdoors. There's not something wrong. This is how he is. <br />
Of course, the last thing I want is for anybody to feel bad for asking us questions like that. There's no way anybody could know what it's like unless they lived it on a daily basis. So, I'm not frustrated, or hurt, or upset in anyway with anyone. I'm just tired, especially after today, and needed to vent a little. Thanks for listening.<br />
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keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-4863410141661260402013-05-20T20:37:00.001-07:002013-05-20T20:37:21.100-07:00Welcome to HollandI did not write the following piece. A friend of mine, also a special needs mom, sent it to me awhile back. I cried my eyes out the first few times I read it and sometimes still do. It so beautifully puts into words the thoughts and emotions that I've gone through this past year and it reminds me that I'm not alone. Here it is:<div>
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<i><span style="-webkit-text-stroke-color: rgba(255, 255, 255, 0.00784314); -webkit-text-stroke-width: 1px; background-color: white; color: #201f1e; font-family: Arial, 'Helvetica Neue', Helvetica, sans-serif; font-size: 14px; line-height: 18px;">"Welcome to Holland" </span><br style="-webkit-text-stroke-color: rgba(255, 255, 255, 0.00784314); -webkit-text-stroke-width: 1px; background-color: white; color: #201f1e; font-family: Arial, 'Helvetica Neue', Helvetica, sans-serif; font-size: 14px; line-height: 18px;" /><span style="-webkit-text-stroke-color: rgba(255, 255, 255, 0.00784314); -webkit-text-stroke-width: 1px; background-color: white; color: #201f1e; font-family: Arial, 'Helvetica Neue', Helvetica, sans-serif; font-size: 14px; line-height: 18px;">I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this: When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. - Emily Pearl Kingsley</span></i></div>
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I sometimes don't know whether I should keep hoping for Italy, but like I've said before, I know we'll be where God wants us to be and who He wants us to be</div>
keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-85958828376528378262013-05-16T22:01:00.003-07:002013-05-16T22:06:11.123-07:00The Latest and Greatest and not so GreatestLevi had an appointment with Dr Q last Friday. It went well, overall. There haven't been any changes to his EEG, which is on the good side. Dr Q feels like Levi is progressing better than 90 - 95 percent of most children with his condition. This was very encouraging to hear. And then came the "but". Why is there always a "but"? Until now I had thought that once we had his seizures under control and we had ruled out any known causes (which we did) that we could stop having so many appointments (every three to four months). I thought we could only go uphill from here. BUT, yes there's that word again, the problem is that as much as half of those diagnosed with infantile spasm will later present with a completely debilitating form of epilepsy that leaves the person with daily, uncontrolled seizures of all kinds and a high probability of severe mental handicap. (cue my heart sinking to my stomach)<br />
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Dr Q said that Levi is not showing any signs for this syndrome, but that it can present anywhere from age 2 to age 6 and even beyond. So, we have to watch him closely.</div>
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It seems that since he's doing so well, Dr Q feels very encouraged that we probably won't have to worry about it. But, just that there's a chance is pretty scary, especially when I was just thinking there was no way it could get worse. Honestly, that's what I've been hanging on to until now. So, since it can get worse I'm just having to learn to trust God in an entirely new way. I am trying to hope for the best and yet be prepared if the worst were to happen. </div>
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One thing I know is that God spoke to my heart when all of this was first starting. He told me, "Levi is going to be who I made him to be." I have been clinging to that even more since I heard that it could possibly get so much worse. I keep speaking Psalm 139 over him - that's the one about being "fearfully and wonderfully made". Please, please be praying for my Levi. Would you pray Psalm 139 over him? Would you pray that the epilepsy would not progress to this way worse syndrome? Would you pray for his complete healing? Would you pray for peace and grace for his Mom and Dad, too?</div>
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On another note (pun intended as you'll see), I've had the perfect outlet to help me process all of this. I've joined the annual 5in5 challenge with a bunch of musician friends all over the globe this year! It's really cool. We all have to write five entirely new songs in five days (get the pun now? note.... song? Ha!) Anyway, a couple of the songs that I've written have come straight from the emotions of the past year. I hadn't written much music since everything happened with Levi. I think it was a way of protecting myself, so it's been really good to get it all out.</div>
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Here's the links to the songs that I mentioned above: I hope you enjoy them.</div>
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This song is from day 4 of 5in5:</div>
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<a href="https://soundcloud.com/kluntsford/picture">https://soundcloud.com/kluntsford/picture</a></div>
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This song is from day 1 of 5in5:</div>
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<a href="https://soundcloud.com/kluntsford/dreams-2">https://soundcloud.com/kluntsford/dreams-2</a></div>
keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-71995035008640531062013-04-30T21:26:00.001-07:002013-04-30T21:26:57.135-07:00SettlingI feel like I'm finally getting a grasp of the events of the past ten months. Until now, life has been pretty surreal. I think a huge part of it is that I haven't known what to expect or how to help. Is it autism? Is the delay permanent? If it is permanent, how severe will it be when he's older? Will people be able to tell that he has problems? How much will he struggle? What will his strengths be? <div>
The questions are endless and we've had one of them answered - it's not autism - but, we don't know the answers to anything else. Yet, somehow, I feel settled. For the first time since that first week in the hospital, I feel like we have a plan of attack. We've got specialists coming out of our ears. So far, we've got a special ed teacher coming twice a week. A speech therapist joins the teacher once a week. We're getting ready to start occupational therapy once a week and then sometime in the next few months we'll add another speech therapist twice a week. We've got a DD (developmental delay) worker - a social worker who is helping us find even more services including some grant money to help us get some supplies that will keep Levi safe as well as some educational toys and games, etc.... We also have a social worker who is helping us find even more services. She's currently seeking out yet another specialist to come and work with Levi. Then there's a financial worker who is helping us find ways to help pay medical bills and the like. Of course, I've mentioned Dr Q, the neurologist and Dr. Schultz, the developmental pediatrician. And, finally, we will have some respite care - someone to come and watch and work with Levi while I catch up from all of the appointments and meetings and emails so I can have a chance to do things like laundry, grocery shopping, and yes, even taking a shower!</div>
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I've said it before, this is going to be a long road. I might not know where that road is going to end, but I know we're doing EVERYTHING we can to help my Levi reach his full potential. We're hoping and believing for a complete recovery, but until that happens I can be secure in knowing that Levi is going to be who God made him to be and I'm doing all that I can to see it happen.</div>
keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com1tag:blogger.com,1999:blog-7958349702926124700.post-85779433036807642152013-03-25T13:52:00.001-07:002013-03-25T14:06:04.438-07:00Diagnosis NegativeSo..... Levi's autism screening was negative! He does not have autism! We went in for the testing and Levi had his best day ever. He did things for the test that he had never done before. The great thing is that he is continuing to do them! This, we know, is due to the prayers of our friends and family. Of course, we are very relieved that we won't have to deal with autism. Autism, in general, doesn't go away. A person can learn to handle it and work past it, but the struggle is still there. Levi is still quite delayed developmentally and we still have an uphill battle, but, without autism, there might be more of a chance that he can completely catch up and eventually have no problems. We don't know how high that chance is, but I believe it's higher than it would be with an autism diagnosis. Of course, if he is able to catch up, it will take time, probably years, but he won't have many of the social struggles that come with autism. And, that, right now, is good enough for me!<br />
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The other good news is that Minnesota is one of the top states for the services it offers to children with disabilities. We already have a teacher come in twice a week and now a speech therapist is going to join her once a week. But, we're going to be able to get many more therapies and services to help him out. The earlier he gets these interventions the better. It won't be easy, and we're not guaranteed that he'll ever fully catch up, but he has a much greater chance with these services. So, for his sake, we're doing it all. Whatever we qualify for, we're doing it. Thank you Minnesota! Most of all, thank you Jesus! My baby boy is going to be who You want him to be no matter what happens. keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com1tag:blogger.com,1999:blog-7958349702926124700.post-60931354840996248512013-03-10T21:35:00.000-07:002013-03-10T21:41:49.605-07:00Roller Coaster<br />
Well, alot has happened since my last post. We've had another appointment with the neurologist, Dr. Q as well as one with the developmental pediatrician, Dr. Schultz. We were so excited that Levi's EEG in October showed less potential for seizures and that his language was increasing. But, unfortunately, the most recent appointments have stifled our excitement. Levi had another EEG a few weeks ago and this time it showed potential for full blown tonic-clonic (grand mal) seizures (which it hasn't shown in the past). It also showed that the slowing on his brain has returned. Dr. Q was concerned about this. He said that instead of waiting six months till his next EEG, like we had anticipated, he'll need another one in two to three months. He also said that if it still shows slowing on Levi's brain, he'll need to have another MRI to make sure they didn't miss any problems on the original MRI. Boo.<br />
A couple of weeks later we had his developmental appointment. Like I said before, Levi had grown so much in language that I was certain Dr. Schultz would excuse any previous thoughts of autism. Unfortunately, his improvement in language didn't carry over into his communication skills. In other words, he has more words than he used to, but he's not able to use those words to consistently communicate thoughts or even his basic needs. Soooooooooo, this past week we made the trek back to Rochester for the third time in a month for the official autism screening. We have to go back this Friday to discuss the results with Dr. Schultz. I'll keep you posted.<br />
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On another note, we spent an evening in the ER this week because Levi was having seizures due to a high fever. It's the first time he's had any seizures since his initial hospitalization. The really bad part is that it was the spasm seizures. I mentioned, in my last post, that if Levi continued to be seizure free, especially spasm free, Dr. Q might be willing to switch to a milder medication. And, at his appointment a few weeks ago, that was confirmed. But because of his seizures this week, now, instead of switching to a milder medication, we have to increase a medication that could be making his developmental issues worse. Again, Boo.<br />
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This was a very technical post, not well written, but it's helping me process all the ups and downs of this roller coaster ride. I'm trying to find that balance between hope for miraculous healing and faith that God might want to use this challenge to form our family into what He wants. So, for now, I'm just processing....<br />
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The one thing that I don't have to process, though, is that God gave me this beautiful boy just the way he is - joyful, playful, silly, and oh so affectionate! Levi is going to be who God made him to be and nothing can get in the way of that. Nothing can. No label, no diagnosis, no prognosis is going to change who he is. And, I'm hanging on to that truth with every fiber of my being.<br />
<br />keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com1tag:blogger.com,1999:blog-7958349702926124700.post-42551408273525931232013-01-24T15:15:00.000-08:002013-01-24T15:15:00.318-08:00Development<br />
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So, in my last post I mentioned that exciting things are happening in regards to Levi's development. Over Christmas break he started doing and saying things he has never done or said before! He started mimicking words regularly (something he did very infrequently before). He started making animal sounds at the appropriate animals without being prompted to do so (he would rarely do it when he was prompted and only for a couple of animals). Now he knows several animal sounds! He started pretending to eat toy food and talk on phones. This is a huge step as he had never pretended before. He has also starting bringing us toys and books to play and read with him. Again, this is something he's never really done. These things might seem simple to most people, but they are things he should have been doing six to twelve months ago. So, to see growth like this so quickly is very encouraging! We are quite encouraged by this development and are hoping to see him continue at this rate.<br />
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The main thing to keep praying for is that he is still inconsistent in all of this. This could be caused by his yucky seizure meds, but the developmental specialist said it could also be a sign of autism. She said he is not on the autism spectrum at this point, but that if he continues to be inconsistent in his attention and his performance that we may have to reevaluate. Before we do that, though, she wants to try to get him off of his current seizure medication and onto something that doesn't cause developmental problems like this one does. The ONLY reason he's on it, at this point, is because his seizures were doing more damage than the medicine could do and the regular seizure meds weren't stopping the seizures. But, since they've been stopped for awhile, we'll be talking with Dr. Q about when we can make some changes. He's the ultimate deciding factor for that. But, once we do change his meds we'll be able to tell what is causing his inconsistency. Please pray that it's the medication and that we can switch to something new soon!! <br />
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We have another appointment with Dr Q as well as another EEG in a couple of weeks so I'll have more to share soon.<br />
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<br />keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com1tag:blogger.com,1999:blog-7958349702926124700.post-20993798098132677252013-01-14T18:15:00.001-08:002013-01-14T18:15:36.461-08:00Catching UPWOW!! It's been two months since my last blog post! I've got some serious catching up to do. So, I'm going to cut to the chase. <br />
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November, as you may have noticed by the hideous redecoration of my blog site, was National Epilepsy Awareness Month. I successfully posted about epilepsy two or three times and then got sucked in to the craziness of the holidays. Making homemade stockings and hand warmers for my entire family ended up taking my every spare moment.<br />
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I also spent A LOT of time in the doctor's office waiting room - twice a week for four out of six weeks (all of Nov and the first two weeks of Dec), and once a week the other two of those six weeks. It was a little crazy. But, things are slowing down now so I've been able to have some chill time over the past week or so.<br />
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On to the Levi front. Of course a goodly portion of waiting room time was for him, but I'm happy to say that his appointments are going to be spreading out a bit. Hooray! I will, though, share the results with you because that's what I do here :)<br />
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The big appointment that we had with Levi was toward the end of November. We met with a developmental pediatrician who, you guessed it, assessed his development. She asked me a million and two questions and observed him while he played and played with him and talked to him, etc.... etc.... etc.... In the end, she said what I already knew. At 23 months old he was assessed at a fourteen to sixteen month level for play and physical coordination, but at a twelve to thirteen month level for language. Like I said, this wasn't a huge surprise to me considering my previous post about Jack. It was disappointing, though, to hear it as an official assessment. <br />
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Do you remember that one time in one of my previous posts that I cracked that one funny joke about how if Levi is six months behind now then when he's thirty people aren't going to get on to him for acting like he's twenty-nine and a half so I have nothing to worry about? Well....., apparently that's not quite how it works. Instead of months behind, it's percentage behind. So, according to the doctor, he's behind by about thirty percent. So, if he's behind by thirty percent at the age of thirty,.... well..... you can do the math. So, that was disappointing as well. But, she did say that children who start out on track, like Levi did, and then have some kind of event or medical situation that causes the developmental delay, like Levi did, have a better chance of gaining ground back. She just didn't want to get my hopes up, because it is also likely for someone in his situation to remain delayed.<br />
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So, I was rather disappointed and have really struggled with it, especially for the first few weeks. It's not easy to realize that your vision for your life, and your child's life, might not be even close to what you expected and dreamed. So, I've had to let go of some dreams and ideals that I never thought I'd have to let go of. It's been hard, but, amazingly, it's been liberating. I'm reminded, again, of God's sovereignty. I'm not in control of anything and the reality is that no matter how well life goes, things aren't going to go quite how I expect them to. And, the more I can let go of my dreams and just let God have His way, the more I'll be able to handle it and even embrace it and be content and happy when things don't go my way. I'm not saying I'm giving up hope for a complete recovery. On the contrary, I know Levi will have a complete recovery. I just don't know exactly what that will look like. And I'm becoming more and more okay with that every day.<br />
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Now, since Levi had that last appointment there have been some pretty exciting developments in his development (ha. developments in his development. I'm funny.) But, that's for another post. This one's getting too long.<br />
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To Be Continued..........keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-19338986713403668682012-11-13T08:51:00.000-08:002012-11-13T09:16:19.508-08:00How To Help A Seizure Victim<br />
Being new to the epilepsy world, I don't know if the word victim, in reference to someone having a seizure, is politically correct. But, it's really the only way I know how to word it at this point. And, for those of you who know me, I'm not all that concerned with being politically correct anyway.<br />
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My last post gave lots of information about the different kinds of seizures and I promised to follow up with information on how to help somebody who is actually having a seizure. So, I'm going to restate the ways a seizure can present itself and then give ways to help after each one. <br />
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<span style="font-size: x-small;"><b>1. Loss of Awareness/Consciousness (focal seizure)</b> - A person suddenly interrupts an activity and stares blankly. This may or may not be accompanied with fidgeting, like playing with fingers or buttons or lip smacking or chewing. This can also cause strange sensations like smells or tastes.</span><br />
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If you come across somebody who is having a focal seizure just stay with them until they regain consciousness. Time the seizure for them so they know approximately how long it lasted. Once they regain consciousness ask them basic questions regarding their name, the date, etc.... Ask them if there's anybody you can call to sit with them if they need time to recover. Stay with them until you know they are fully recovered as these seizures can sometimes be followed by tonic clonic seizures.<br />
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<span style="font-size: x-small;"><b>2. Partial Body Convulsions/Involuntary Movement</b> - Only part or one side of the body convulses or jerks, often rhythmically. Sometimes people may collapse due to the kind of movement caused by the seizure.</span><br />
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Again, stay with them. Time the seizure. They may or may not know what's going on. If they are unable to respond to you and the seizure has lasted more than a few minutes, it may be necessary to call for an ambulance as emergency medication might be necessary. (I'm not as familiar with this kind of seizure, but it's always better to be safe than sorry.) Once the seizure ends, stay with them until you are reassured that they have received the help they need.<br />
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<span style="font-size: x-small;"><b>3. Full Body Convulsions/Involuntary Movment - </b>The entire body is convulsing or jerking. The most obvious kind being Tonic Clonic (Grand Mal), which is a constant convulsion of the entire body. </span><br />
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If a person presents with a full body, constant convulsion type of seizure, they will be completely unconscious and unable to respond. First, clear the area, where they are laying, of any objects that they could bump into and cause injury. Then, if possible, turn them to their left side and tip their chin down just slightly (as in CPR) to open up the airway. Keep a hand on them and speak calmly to them. Reassure them that they will be okay. And, in the mean time, time the seizure and call for emergency assistance if it lasts more than a few minutes. If these seizures last too long, they could cause brain damage due to a lack of oxygen to the brain. Stay with them until somebody they know is there to help. This kind of seizure will often cause muscle pain and weakness as well as extreme fatigue once it's finished, so they will need assistance. One other thing that everybody should know about tonic clonic seizures or any seizure for that matter. People CANNOT swallow their tongue if they're seizing. DO NOT EVER put any object in their mouth to hold their tongue down. It could seriously injure or even kill them. Like everybody else, they need their mouth clear of objects so they can breathe.<br />
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<b>So, there you have it</b> - the basics to handling a seizure. Please know that I am not a physician and that I am new to the world of epilepsy and seizures. This is the basics as I understand it. I'm sure that when it comes to describing the types of seizures I've given some inaccurate information. But, like I said, we really just need to know how to respond and I just told you everything the hospital told me so I should be good on that side of things. The important thing is to be there for the person, help keep them safe, time the seizure and call for medical help if necessary. And again, don't put anything in their mouth. EVER.<br />
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keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-6923525783390068372012-11-09T13:05:00.002-08:002012-11-09T13:42:44.374-08:00Seizures<br />
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Like I said in my last post, over two million Americans struggle with epilepsy. The problem is that most people wouldn't know what to do if they came in contact with somebody having a full blown tonic-clonic (grand mal) seizure. It's a scary thing that I haven't personally experienced and I honestly hope I never do. But, because of my sons condition, I have to be prepared for the worst case scenario and so should you. And once you are prepared, not only could you help a person who is having a seizure, I can also add you to my babysitting list. It's pretty short, at this point, for this very reason, and I wouldn't mind having a nice long date with my honey.<br />
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With that, I want to share with you what I know about seizures. My seizure knowledge is actually pretty basic. I watched a couple of videos about seizures before Levi was released from the hospital in July and other than a couple of questions to Dr.Q. that's all the training I got. But, it's really all I needed. So, I'm going to share that with you.<br />
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<span style="color: #660000;"><b>Seizure Basics</b></span><br />
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There are several kinds of seizures that each present differently. I stole the following chart off of WebMD.<br />
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<table border="1" bordercolor="#000000" cellpadding="3" cellspacing="2" style="background-color: white; color: black; font-family: Arial, Verdana, Helvetica, sans-serif; font-size: 13px; line-height: 16px; text-align: left;"><tbody>
<tr><td align="middle" valign="top"><b>Generalized Seizures</b><br />
(Produced by the entire brain)</td><td align="middle" valign="top"><b>Symptoms</b></td></tr>
<tr><td nowrap=""><b>1.Tonic-Clonic "Grand Mal"</b></td><td>Unconsciousness, convulsions, muscle rigidity</td></tr>
<tr><td><b>2. Absence</b></td><td>Brief loss of awareness, can include fidgeting</td></tr>
<tr><td><b>3. Myoclonic</b></td><td>Sporadic (isolated), jerking movements</td></tr>
<tr><td><b>4. Clonic</b></td><td>Repetitive, jerking movements</td></tr>
<tr><td><b>5. Tonic</b></td><td>Muscle stiffness, rigidity</td></tr>
<tr><td><b>6. Atonic</b></td><td>Loss of muscle tone</td></tr>
</tbody></table>
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<table border="1" bordercolor="#000000" cellpadding="3" cellspacing="2" style="background-color: white; color: black; font-family: Arial, Verdana, Helvetica, sans-serif; font-size: 13px; line-height: 16px; text-align: left;"><tbody>
<tr><td align="middle" valign="top"><b>Partial Seizures</b><br />
(Produced by a small area of the brain)</td><td align="middle" valign="top"><b>Symptoms</b></td></tr>
<tr><td><b>1. Simple</b>(awareness is retained)<br />
a. <b>Simple Motor</b><br />
b. <b>Simple Sensory</b><br />
c. <b>Simple Psychological</b></td><td>a. Jerking, muscle rigidity, spasms, head-turning<br />
b. Unusual sensations affecting either the vision, hearing, smell taste, or touch<br />
c. Memory or emotional disturbances</td></tr>
<tr><td><b>2. Complex</b><br />
(Impairment of awareness)</td><td>Automatisms such as lip smacking, chewing, fidgeting, walking and other repetitive, involuntary but coordinated movements</td></tr>
<tr><td><b>3. Partial seizure with secondary generalization</b></td><td>Symptoms that are initially associated with a preservation of consciousness that then evolves into a loss of consciousness and convulsions.</td></tr>
</tbody></table>
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So, as you see, there are ALL KINDS of seizures. I honestly don't completely understand how everything is categorized, but the way I understand it is that seizures can cause three basic categories of physical reactions and it's the reactions that we need to be aware of, not the fancy names or what exactly is happening in the brain. So here they are, in my own words:<br />
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<b>1. Loss of Awareness/Consciousness</b> - A person suddenly interrupts an activity and stares blankly. This may or may not be accompanied with fidgeting, like playing with fingers or buttons or lip smacking or chewing. This can also cause strange sensations like smells or tastes.<br />
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<b>2. Partial Body Convulsions/Involuntary Movement</b> - Only part or one side of the body convulses or jerks, often rhythmically. Sometimes they may collapse due to the kind of movement caused by the seizure.<br />
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<b>3. Full Body Convulsions/Involuntary Movment - </b>The entire body is convulsing or jerking. The most obvious kind being Tonic Clonic (Grand Mal), which is a constant convulsion of the entire body. I'm pretty sure that Levi's seizures fit in this category. They were not tonic clonic as he was not constantly convulsing. But, although it looked like only his head and arms were moving, when I held him I could actually feel his entire body jerking with each seizure.<br />
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A person's seizures can present in just one of these ways or in multiple ways. For instance, it is not uncommon for a focal (staring) seizure to be followed by a tonic clonic seizure.<br />
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<b>So, there you go.</b> That's everything I know about seizures and what happens if somebody is having one. And, no, I didn't share what you should do if somebody is having a seizure. This post is getting to be pretty long so I guess you'll just have to stay tuned!<br />
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keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-18583931389475016542012-10-31T20:41:00.002-07:002012-10-31T20:41:32.958-07:00Epilepsy Awareness MonthNovember is Epilepsy Awareness Month so I've changed my blog decor to hopefully help bring awareness. I know, I should become a graphic designer, right? Maybe not. But, maybe the fact that I did a terrible job redesigning the look of my blog will draw attention to my cause. Hey, negative attention is still attention! Although, if anybody has any tips or wants to completely take over and make it look better just let me know. I will let you do it. As long as you make it look better....<br />
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Anyway, like I said, it's Epilepsy Awareness Month. So BE AWARE!! You never know when you might come across somebody who is having a seizure and needs YOUR help. You can get educated about how to handle a seizure by taking the "Get Seizure Smart" quiz right <a href="http://www.epilepsyfoundation.org/neam/quiz/SeizureSmartQuizForm.cfm" target="_blank">here</a>. So, go ahead, take the quiz and I'll send you a piece of candy. I really will as long as you let me know and tell me where to send it! Please don't post your address in the comments section, though. Not a good idea.<br />
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Along with posting about Levi's progress, this month I will be offering tips and facts about epilepsy and how you can be a support to the 2+ million Americans who suffer from this often debilitating condition.<br />
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In the mean time, <a href="http://www.epilepsyfoundation.org/neam/quiz/SeizureSmartQuizForm.cfm" target="_blank">Get Seizure Smart!!</a>keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-81427665453331469962012-10-29T08:16:00.002-07:002012-10-29T08:16:11.432-07:00NEVER<br />
This has not been an easy year in the Luntsford house. It all started last September with Toby, two at the time, in the hospital with pneumonia while we were at a conference out of state. That was followed by five straight weeks of sickness, ranging from sinus infections to the stomach flu, from late October to mid December. We had a break through the rest of winter, but, in March, we discovered that my husband had a blood clot in his leg, which can be life threatening if it's not resolved quickly. He had shots to thin his blood every day for almost three weeks and then went on medication to keep it thinned so the clot would fully dissolve. Except for one week, we either had house guests or were traveling from the last week of May to the second week of July. The third week of July we were in the hospital for a week with Levi and the seizures. And to top it off, I turned thirty in June. I did NOT want to turn thirty. But, just like the rest of the craziness that I didn't want, it happened anyway. I can't change it. I can't make it go away. The only thing I can affect is how I respond to it all. And, the only way I can respond is to remember that through it all my God will NEVER leave me or forsake me. For my last post, I shared the lyrics to a song that has helped to carry me through this time. I found it on YouTube and wanted to share it here. Whether you're having a hard week or a hard year I want to encourage you to take some time to focus on the goodness of God. He is NEVER changing, NEVER failing, NEVER giving up, NEVER leaving, NEVER forsaking. He is only good.<br />
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<br />keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-34747659924184541912012-10-10T21:07:00.000-07:002012-10-10T21:07:01.281-07:00The "A" Word<br />
So, we had Levi's latest check up this past Friday. Overall, it went very well. He got to wear a hat with the electrodes for the EEG instead of having thirty-two electrodes individually super glued to his head and then individually scrubbed off leaving bits of glue and removing bits of scalp. That was nice. The wait was much shorter this time. The EEG was at 7:30am and the checkup with the doctor at 12:45pm instead of 4:30pm. Also nice. We got home in time for dinner. Very nice on the wallet. The four lane highway, on the way there, that has been under construction for almost ten years, was finished, cutting about twenty minutes off the drive. Very nice. Like I said, overall, it went very well.<br />
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The appointment itself was pretty normal. Dr. Q took well over an hour with us, which I greatly appreciate. Nothing worse than driving and waiting for seven hours to spend ten minutes with the doctor. Not only did he give us lots of time, but he also remembered specifics about Levi and his case that I would never remember, especially if I were a neurology resident working thirty hour shifts (which he does do). When I commented on that, he said, "Of course I remember. Levi is is special." Have I mentioned that I LOVE Dr. Q? Well, I LOVE him. He makes me feel like Levi is not just an interesting case study, but an actual patient - a valuable patient. I like that. I want to hug him for that. Would that be awkward? <br />
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So, anyway, the appointment went well. We reviewed Levi's EEG. Where it previously showed activity that could cause seizures on both sides of his brain before, this time it showed the seizure potential was only on the left side. Dr. Q didn't want me to be too excited about it because apparently the right side could have just been taking the day off of producing potential seizure activity - my words, not Dr. Q's. His words - "I'm not quite sure what to think of it." Okay. I'll just believe that God is healing my baby. But, I'm not going to freak out if next time it shows activity on both sides again.<br />
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As well as discussing the EEG, we also discussed medication. We had to increase his meds which kills me a little bit. But, Dr Q says that he's already being risky by giving Levi very lowest doses possible so even the slightest weight gain requires more meds. So, I guess I understand that. I prefer meds to more brain damaging seizures, or seizures of any kind for that matter. <br />
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The last thing we talked about was the "A" word - autism. This was the hard part of the appointment. As with any case of spasm type seizures, Levi is being constantly observed for traits that fall in the autism spectrum. There are three of them - language delay, repetitive movements, and social delay. According to Dr Q, Levi has two of the three - language delay and some possible repetitive movements. He is recommending that we increase his therapies, especially speech, so we can be on top of it, rather than just treat it. Mama doesn't like to hear this. I'm happy to know he is actually quite high on the social scale, which is usually the hardest thing to deal with in cases of autism, but it's still not a nice conversation to have about <i>my</i> son. <br />
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To clarify - he has NOT been diagnosed with autism. At this point, he only has two of the three traits and one of those, repetitive movement, is unclear. He has to have all three, I believe, to be diagnosed. But, that he doesn't have all three traits, apparently doesn't mean he won't develop social issues later. So, we have to watch very closely. I don't like it. Just thinking of the possibility of my baby having autism is devastating. It could make that suddenly steeper hill even steeper and higher, like forever higher, as in life-long struggle higher. As in, everything I thought about how my life would be has just changed higher. You never realize how many expectations you have for life until you realize they may not happen. <br />
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Now, the good news is that even if the "A" word is an issue, we'd be starting interventions very early which would give him a high chance of living a pretty normal life. So, I'm not freaking out.... too much. But, I will be honest, I feel like I'm going through a grieving process. Either way, my life has changed, and forever, for the bad and the good. It will never be the same. Ever. But, do you know what will be the same? Or maybe I should say WHO will be the same. My Father God. He is the same yesterday, today and forever! He doesn't change! He is good! He has a plan! He is Abba - Daddy God. Forever. Period.<br />
<br />With that, I'm going to leave you with the words to the chorus of a song that has carried me through this week:<br />
<b>Afterall, You are constant. Afterall, You are only good. Afterall, You are Sovereign. Not for a moment, will you forsake me.</b><br />
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I'm so glad I can trust in Him!keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com1tag:blogger.com,1999:blog-7958349702926124700.post-64927485545713094172012-10-02T20:49:00.000-07:002012-10-02T20:55:16.955-07:00JACKWow, it's been forever since I last posted anything. I was out of town for, essentially, two weeks with just a little break to come home and do laundry before leaving again. It was a fantastic two weeks, though! And well worth the time away from my computer. I probably needed a little disconnect from my little electronic universe anyway. :)<br />
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On top of being gone, my entire family, except for myself, got double pink eye. DOUBLE. In both eyes. Not sure how it skipped over me. Grace of God, I guess! So, the combination of the two has kept me well away from all of my friends. I'm pretty sure it had been three weeks since I'd seen anybody until church this past Sunday when I finally saw EVERYBODY and got a dinner invite! To say the least, I was ecstatic! Things had been crazy enough that I didn't have the energy to cook a meal for my own family, much less somebody else so free, pre-cooked food and fellowship with good friends sounded like the perfect plan!<br />
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So after a chill kind of afternoon at home on Sunday afternoon, we headed over to see our friends, eat some chilli for dinner and watch "Bill Cosby Himself". It's a classic. I hadn't seen it since becoming a parent and it was that much more hilarious because of it. If you haven't seen it, you need to, especially if you're a parent. That's all I have to say about that.<br />
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I discovered something, though, while we were there, mostly watching the video while chasing our toddlers around. Jack - a beautiful, curly, red haired boy, a ginger in the truest sense of the word - is not quite fourteen months old. He's your average thirteen month old, in terms of development. In terms of size, he's ginormous! He's always been huge and is starting to grow into himself, but he's still huge all the same. Let's just say this, Levi is eight months older than him and they've worn the same size of clothes since Jack was nine months and Levi seventeen months. But, in terms of development, he's your average thirteen month-er.<br />
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And, this is what struck me. As I watched Jack play, I realized that some of the things he was doing are things that Levi (twenty-one months) is just now learning to do. It stung a bit to think that Levi is that far behind in some areas. I don't think I really realized he was that delayed until that night. Fortunately, this is not in all areas of development, but it is in some. The good news is that even if Levi stays six to eight months behind for the rest of his life, eventually it won't be a distinguishable difference. I mean, it's not like when he's thirty or forty people are going to be thinking, "Wow, he's a little slow for his age. He's got to be at least, what, six, eight months behind?" Ha!<br />
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But, the hard part is more the realization that I've got two years of raising a one year old mind. We're having to teach him things we've already taught him. We're having to rediscover how to discipline him since we're not even sure he knows what's going on at some points. His weakest area of development (per early childhood screening) is communication, which can be very frustrating. When you have a kid the size of a two year old who communicates like a one year old, it's frustrating. <br />
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So, that's going to be the hard part. It's going to be uphill for awhile, and I think I'm just now realizing how steep the hill is and that it's a little higher than I thought. But, it's still nowhere as steep as so many others' hills. And this up hill battle will not get me down. How can it? It's going up! Besides, the good news is that he WILL catch up sooner than later. Thank you Jesus for that!<br />
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And thank You Jesus for good friends who make food and invite me over to eat it, hassle free! What a blessing!keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com1tag:blogger.com,1999:blog-7958349702926124700.post-47947920633908116472012-09-04T09:52:00.001-07:002012-09-04T09:52:26.082-07:00He Holds Us<br />
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I watched Levi's first birthday video the other day. I must admit, I never do this. I'm pretty sure I've never watched Toby's first birthday video, or his second, or his third. But, three days ago, I found myself perusing through pictures on our computer when I ran into Levi's first birthday folder. His face was so little, in comparison to now. I wanted to see all of the pictures and remember what he used to look like pre-steroids. Granted, it was eight months ago. But, I was drawn to them all the same when I came across several little video files of presents and cake. It was his first birthday, so of course we put the entire cake on his high chair tray and let him dig in. Now, usually, I skip past the videos. Not always. Usually, though. They just take so much more time - something a mom with two small boys doesn't have in surplus.<br />
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This time, though, I played the video. I watched my beautiful boy as he daintily pinched at the frosting on the cake and stayed perfectly clean for the first five minutes. He had an amazing pincer grasp if you ask me. :) I watched as he slowly began to dig in with his entire hand as he realized there was something under that frosting! I watched him say "Bye Bye" to somebody as they left the room. He waved his cake-filled hand enthusiastically, spraying cake and frosting all over the place. Wait, he said "Bye Bye" and waved. I realized that must have been something he had lost from the seizures because at eighteen months he wasn't doing that anymore. I had forgotten that he had been able to do it at all. I watched him do a few more things that I wondered if he had lost from the seizures.<br />
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<b>But, then I watched him have a seizure</b>. Right there in his high chair! On his birthday! Six months before we ever saw them! I replayed that segment of the video countless times wanting to be sure of what I was seeing. After showing it to my husband and watching it about a gazillion times, my conclusion has stayed the same. He had a seizure. And who knows how long he'd been having them up until that point. We thought that he had started having them somewhere between seventeen and eighteen months. They're a subtle kind of seizure so we knew we'd probably missed a few episodes, but I never could have imagined that we'd been missing them for six months.<br />
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<b>The crazy thing is</b> that usually when babies have been having infantile spasms (the kind of seizure Levi has had) for as long as six months, they are cognitively gone. I read one blog where a baby had them for just two months and lost all of his words, was not able to walk and four months in couldn't even sit up on his own anymore. At ten years old, he was considered to have autism and was very behind developmentally. I think about the few things that we were concerned about with Levi's development, but it was just a few and he's catching up so quickly. He's almost on track for his age now. But, he was having these spasms for at least six months!!<br />
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I never cease to be amazed at the goodness of God. He holds us in His big, strong, amazing hands and never lets go. Thank you Jesus for protecting my baby boy.keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-62076291425150571962012-08-27T19:15:00.002-07:002012-08-27T19:15:17.543-07:00Leaps and Bounds<br />
My baby's face is shrinking!! I'm pretty sure not many people can say that with such enthusiasm. We're something like five or six weeks without any seizures and three weeks off of the steroids. Levi is back to his happy, dramatic little self and is making huge strides in his cognitive development. He's suddenly communicating with us in ways that he should have been a few months back, but he's doing it all at once. He's calling a few objects by name. He's trying to get our attention. He's using words and signs appropriately. It's been very encouraging. I don't remember if I've already mentioned this, but just before the seizures started, his doctor was a little concerned about his development. There were several things that he wasn't doing that an eighteen month old should be able to do. Being behind on one or two of those things can be completely normal, but he was behind in several. His neurologist does attribute this to his seizures and said that all of this development happening so quickly after putting a stop to the seizures is a great sign that we've got the infantile spasms managed.<br />
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It's still been hard to deal with the concept of a child with epilepsy. Life is pretty normal other than the morning and evening meds, but the idea of it has been difficult for me handle. I've had so much support and encouragement from so many dear friends, though, and some days it has been those very thoughts and prayers that have helped me push through. I had one comment, particularly, this past week that meant so much. I've had so many texts and calls seeing how I'm doing, sending prayers, and sending youtube links about how good our God is. But, for some reason, one little phrase from a friend put into words what I couldn't.<br />
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<b>"That has to hurt your heart,"</b> she said. It was a simple sentence - one little phrase. It was the only thing that anybody has said to me, through all of this, that made me bawl my eyes out. That was it. The thing I couldn't put to words. It wasn't some beautifully written card with eloquent words; it was one little, simple phrase, sent in a text. And, for some reason , the tears that I cried when I read that phrase were like a salve to my hurting heart and I've been able to face each day with a new outlook. Sure, my heart still hurts when I think about it. But, in spite of everything, Levi is doing fine. In fact, he's growing by leaps and bounds! And, so am I.<br />
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Thank you, dear friend, for reaching out with the most simple, but heartfelt words.keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-78380866599690249782012-08-17T11:45:00.000-07:002012-08-17T11:45:14.713-07:00Biking and Pajama SnacksSo, I finally feel like we're kind of catching up on life since we spent a week in the hospital and have had mountains of paper work and bills to catch up on. We paid off the last of our debt this week (save the thousands of dollars of medical bills that we've now accumulated). And, we're starting to get acclimated to life with a baby on scary medicine (he's doing great by the way). All in all, life is moving forward! <div>
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J is working alot of extra hours, partially to make up for time missed, but mostly because he has a huge project due in a couple of months. He worked from 8am to 3am the other day, which, unfortunately, is not necessarily a rare occurance. He frequently works 8am to 9 or 10pm, but makes sure to get an evening or two a week at home with the fam. Lately we've been biking together on his nights off. We load the boys into our little bicycle trailer. They're so cute all cramped up in that tiny, little space, bump bumping down the road. (I wish I had a picture.)</div>
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The weather here has been so gorgeous, which has made our little jaunts so refreshing. We'll usually go to a park and let the boys out to play and then take the long way home. The boys laugh and talk through the whole ride. I love it. It makes the extra-long stay-at-home-mom days more bearable to have that quality time as a family. I am truly blessed with an amazing family.</div>
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On a completely different note, I just gave my boys each a granola bar to snack on. Toby must be growing as he's constantly complaining that he's hungry. I, being the responsible mother that I am, handed them their granola bars and caught up on a couple of my friends' blogs. The next thing I know, Toby is chasing Levi through the play room trying to eat an entire granola bar worth of crumbs that are matted to Levi's pajama pants. For the most part, he succeeded. And yes, it's 1:43pm and my boys are still in their pj's. It's that kind of day. </div>
keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0tag:blogger.com,1999:blog-7958349702926124700.post-91171715295302352812012-08-10T08:21:00.001-07:002012-08-10T08:35:45.467-07:00Tipping the Scale<br />
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I woke up bright-eyed and bushy-tailed this morning. It felt good. I hadn't done that since... who knows when? I mean, I actually woke up before my boys! That has happened like five times ever, and mostly because I had to, not because I wanted to. Anyway, I woke up to the crisp, fresh morning air permeating my room; and it delivered a wonderful message - fall is coming! It's just around the corner! I went downstairs, started a pot of coffee and proceeded to open every window in the house. I opened our back door and breathed in the day. I think I breathed it all the way in to my soul. With that breath came so many emotions - the joy of knowing I'm alive and have such a beautiful little family, the sweet melancholy that another season of my life is fading away, the ambition to get outside and savor every moment, and the lethargy to sleep this beautiful day away. I love how this kind of day always brings such duplicity. And, yet, I kind of hate it, too.<br />
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At this point, I seem to have given in to the latter emotions - melancholy and lethargy. I had to increase the dose of Levi's seizure meds today. This has been the plan all along; but it bothers me - alot. I actually teared up as I opened that extra capsule and sprinkled it into the mushy bite of banana. I know that it's helping to keep him seizure free, but I hate to think of what else it's doing to his body. All of those negative side-effects are constantly floating in the back of my mind. So, I think it was that moment that tipped the scale and dumped me right into the bleakness of a chilly, overcast day.<br />
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The beauty of this kind of day, though, is that the clouds will dissipate soon enough. I'll make myself take the boys outside to play and I'll enjoy the warmth of the sun that counteracts the cool breeze. I'll get the chance to take another breath. And another. It will be beautiful. And, more than likely, it will tip the scale in the other direction.keirahttp://www.blogger.com/profile/03963620834217518903noreply@blogger.com0