tag:blogger.com,1999:blog-4310086215053357172024-03-13T09:59:42.644-04:00Pieces LivedI used to wonder if I was living my life well, if I was doing more than existing. Now I'm sure I am.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-431008621505335717.post-17388312288786035822017-04-03T14:24:00.000-04:002017-04-03T14:28:09.867-04:00To the Mom who is grieving a living loss.My phone died in my hand yesterday morning as I was beginning to compose a reply to a comment on a blog post I saw linked on some facebook page.<br />
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The post was moving and sad, a mother whose son was non-verbal and though his condition wasn't named, it's assumed it's autism by readers and the post coinciding with World Autism Awareness Day. My son isn't Autistic, but I know the feelings she described because I have them. We are mothers who grieve. There's no competition or comparison here, we grieve.<br />
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The comment I was typing when my phone turned off was going to be full of information, presented in a reactive, emotional way that wouldn't have been helpful for anyone. The coincidence of the dead phone left me relieved I'd spared myself getting worked up, however I can't find the post again. Can't find the blog, or the facebook page it came from out of the dozens I follow that post similar content. That part stinks. While my response to a commenter would have done zero good for anyone, I do have a message for the mother that laid her soul bare in a moving blog post. Several really, but there are three main things I want to say to her.<br />
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1. You are not alone. Find a tribe of moms who love and understand you online or in person. Be yourself. Be flawed, be real, you will find a group of people who love and support you. My tribe formed online by joining BabyCenter Communities while I was pregnant. Support was an internet connection away. First there was the birth club, then the Spina Bifida Kids group, once we had a diagnosis in utero. Everyone moved to facebook groups and seven years later I've made and lost friends, watched as my core people evolved, and I've had real people to cry with, to admit defeat with, to share triumphs with, and offer support in return. Sure there's a weeding out of nutballs and jerks, but that's everywhere.<br />
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2. You are doing your best. This is a two parter. You really are doing your best and people who read your post and find fault with your story are not only assholes, they're wrong. Grieving the things you wanted for your child is normal. Parenting a child with disabilities and health conditions is hard as hell and you go on when you have nothing left because you must even when you're raw, lost, or feel dead inside. Shaking off what other people say is hard, but it's harder when you've written a post exposing your throat and someone wants to cut it. I don't blog much because I'm not a great writer, I can be reactive, emotional, and angry and my phone isn't always about to save me by dying.<br />
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3. The grief you're describing has a name, and it's reserved for us caretakers of children or loved ones with disabilities and chronic health conditions. Chronic Sorrow. There's a book and a web page, <a href="http://www.chronicsorrow.org/">www.chronicsorrow.org</a> that can be a source of information and comfort. This grief alone can make it hard to keep going. Combine that with depression, anxiety, physical health or any other myriad issues a person can experience, and the road gets very rough indeed.<br />
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Chronic Sorrow isn't really a well known grief response unfortunately. Parents and caregivers are sort of neglected because of the nature of caregiving. People say you can't pour from an empty cup and I know that's true, but time and money are usually a barrier for our self care. My self care includes therapy, manicures, gardening, and getting a break from our daily routine. The only item that gets regular attention on that list is the therapy, it's important and helps me deal with the grief, anger, and other feelings that are so big that I can't hold them alone.<br />
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While I'm holding out hope I can find the blog post again, it is a long shot in the vast sea of internet blogs. Maybe she'll see this, probably not. If anyone can identify those feelings of sorrow, grief, of wanting your child to have all the things that are impossible for them and feeling broken about it, and this information helps, I'm happy to put it out there. I'm exposing my throat because you are worth that risk. You love your child and I have love for you, we're in this together and you are not alone.<br />
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<br />Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com0tag:blogger.com,1999:blog-431008621505335717.post-26905335039657862562014-08-17T12:47:00.001-04:002014-08-17T12:47:09.347-04:00Success MaybeA little over two years ago I found out about Cincinnati Children's Hospital's Colorectal Center and their Bowel Management Program. Since that day I have done tons of research, made a plethora of calls, chased nurses down at a conference, and asked a million questions of parents who have already taken their child for this program.<br />
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The past two years have been full of anticipation for this program, which touts a success rate of over 95%, which comes so highly recommended by other parents. Finally, Kemper was old enough to make the trip and do the program and I couldn't have been more excited to see a light at the end of the tunnel. This program is not advertised to the Spina Bifida population because they could not handle the sheer volume of people. I could not believe it. I felt so fortunate to have the contacts in our community that I do.<br /><br />To put this in perspective, Kemper is at potty training age and having spina bifida can mean that's not really possible. While I feel like this is a very important issue to address, it's not one that people like to talk about, and Kemper deserves his privacy. So I'm trying very hard to talk about this while preserving that privacy for him.<br />
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We packed up our bags and flew out last week, met my mother in law, Melody, and checked in to our hotel. Kemper loved the people at the airports. He loved the people at the front desk. The next morning, he started making friends with everyone he met at the hospital. And what a hospital it is! It's a massive hospital with modern everything, the most friendly staff, the most smoothly running, and the best child life team I've ever encountered. <br /><br />Our first day, Kemper had to do the hard stuff, blood work and the contrast dye study of his colon. There was a Child Life specialist with him the whole time, and she made this test so much easier. **Here's where I say, parents who want more info on this process, pm me on facebook, because this is where it's a more private issue.** He also had an ultrasound of his bladder and kidneys, but that's cake, comparatively. The woman that did Kemper's blood draw was the very first person to ever get a successful needle stick on my child on the first try. From placing an IV to every single blood draw, everyone, even the teams at Duke, have needed multiple sticks. I had to make a rule, you get one shot in each arm, if you can't do it, we'll come back another day. I wanted to smuggle this woman home with me. Everyone we encountered from the valets to the ultrasound tech was just as friendly and helpful as you please. Kemper introduced himself to the entire radiology team and we all had giant smiles on our faces.<br />
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The next day we attended a seminar conducted by Dr. Pena and Dr. Reddy. Kemper got to go to a room staffed by child life while Melody and I attended. Both men made several of us parents break down into tears of relief and hope. Personally, I finally felt like someone understood the struggles faced by a child with these kinds of issues. The kind of care this hospital strives for is care for the whole child, the disciplines work together and create a plan of care for your child. They said aren't treating a colon, a set of kidneys, or a bladder, they are treating a child and that alone was enough to make a desperate parent explode into tears.<br />
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This program doesn't make the kind of money a surgery to re-route the colon or bladder into a stoma would make, takes much longer, and isn't terribly scientific. But why do surgery if you can get this program to manage the issues? Those are the words of Dr. Pena and I swear I could mouth kiss that man for saying it. After the seminar, a nurse gave us a demonstration of all our supplies and talked to us about the giant binder we'd been given. We were instructed on how to administer, avoid issues, and track progress, because you fly solo for the weekend. It gives you and your child an opportunity to try things out and get used to the process. This is no picnic for a three year old, or any small child. The whole process takes an hour, and 45 minutes of that is sitting still.<br />
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Our weekend was fairly successful, and I was so thankful Kemper had his Grammy there to help us. We were able to do some fun things to make up for the not so fun stuff.<br />
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After Kemper got a belly X-Ray on Monday, we met our nurse practitioner, Ebony Moorefield. Can I just pause here to tell you that this woman is amazing and I also wanted to smuggle her home with me. She's personable, listens without interrupting, and has a palpable compassion. She talked to us at length and we came up with a plan to tweak our program.<br />
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Each morning that followed, we repeated the X-Ray and our meeting with Ebony. Over the course of the week, I'd say we were 80% successful. We didn't leave with everything perfect, and while Kemper is doing so much better, he's still wearing a diaper for now. That's ok, though, because we will be closely in touch with Ebony and should we experience any real problems, our local pediatrician will get an X-ray and send it to her via email. I had to email Ebony while we were still in Cinci and it was less than 10 minutes before I got a response. Can you say WOW?<br />
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We saw Urology Friday morning before we flew out and discussed his kidney reflux, and I feel like CCH would not take the same "laid back" approach of Duke to wait and see how his kidney does. Dr. Reddy actually talked about how your kidneys work until they are in such bad shape they are close to failure. I don't want that to happen to Kemper.<br />
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We were able to meet and have group time with the other parents who were attending as well. We heard some horror stories and we heard some uplifting stories. Two couples brought their children from India, some didn't speak English, everyone traveled a great distance to be at CCH. There were four kids there with Spina Bifida, some with Imperforate Anus, hypermotile colons, and Cloacae. We all wanted better for our kids and we all have high hopes. Kemper and I got to spend a little time with the other SB parents and kids, I'm so happy we did, they are wonderful families.<br />
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So basically, I'm ready to give up my life near the ocean and move to Ohio just to have constant access to this facility and all the wonderful people that make it so great. I've never felt so reassured by the care Kemper has received, I don't say that lightly either, because our team at Duke has been fantastic. They just can't hold a candle to our experience at Cincinnati.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com1tag:blogger.com,1999:blog-431008621505335717.post-53122840195071525322014-02-10T20:38:00.001-05:002014-02-10T20:38:53.136-05:0030 Things My Child Should Know About Me<div style="background-color: white; color: #5a4f40; font-family: verdana, arial, tahoma, sans-serif; font-size: 13px; line-height: 18.66666603088379px; margin-bottom: 12px; margin-top: 12px; padding: 0px; text-align: center;">
<strong style="margin: 0px; padding: 0px;">THE LIST:</strong></div>
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1. <a href="http://www.babymakingmachine.com/2012/12/20-random-fact-about-myself.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="List 20 random facts about yourself.">List 20 random facts about yourself.</a><br style="margin: 0px; padding: 0px;" />2. <a href="http://www.babymakingmachine.com/2013/01/three-legitimate-fears.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="Describe 3 legitimate fears you have and explain how they became fears">Describe 3 legitimate fears you have and explain how they became fears</a> (<a href="http://www.babymakingmachine.com/2013/05/three-legitimate-fears-2.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="graphic version">graphic version</a>)<br style="margin: 0px; padding: 0px;" />3. <a href="http://www.babymakingmachine.com/2013/03/my-relationship-with-your-dad.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="Describe your relationship with your spouse.">Describe your relationship with your spouse.</a> <a href="http://www.babymakingmachine.com/2013/05/30-things-my-kids-should-know-about-me-my-relationship-with-my-husband.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="(graphic version)">(graphic version)</a><br style="margin: 0px; padding: 0px;" />4. <a href="http://www.babymakingmachine.com/2013/05/10-things-i.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="List 10 things you would tell your 16 year-old self, if you could">List 10 things you would tell your 16 year-old self, if you could</a>.<br style="margin: 0px; padding: 0px;" />5. <a href="http://www.babymakingmachine.com/2013/05/5-things-that-make-me-most-happy.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="What are the 5 things that make you most happy right now?">What are the 5 things that make you most happy right now?</a><br style="margin: 0px; padding: 0px;" />6. <a href="http://www.babymakingmachine.com/2013/05/if-i-could-have-three-wishes.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="If you could have three wishes, what would you wish for?">If you could have three wishes, what would you wish for?</a><br style="margin: 0px; padding: 0px;" />7. <a href="http://www.babymakingmachine.com/2013/05/my-dream-job.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="What is your dream job, and why?">What is your dream job, and why?</a><br style="margin: 0px; padding: 0px;" />8. <a href="http://www.babymakingmachine.com/2013/05/5-passions-of-mine.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="What are 5 passions you have?">What are 5 passions you have?</a><br style="margin: 0px; padding: 0px;" />9. <a href="http://www.babymakingmachine.com/2013/05/my-mom-and-10-other-people-who-influence-me.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="List 10 people who have influenced you and describe how.">List 10 people who have influenced you and describe how.</a><br style="margin: 0px; padding: 0px;" />10. <a href="http://www.babymakingmachine.com/2013/05/how-embarrassing.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="Describe your most embarrassing moment.">Describe your most embarrassing moment.</a><br style="margin: 0px; padding: 0px;" />11. <a href="http://www.babymakingmachine.com/2013/05/pet-peeves.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="Describe 10 pet peeves you have.">Describe 10 pet peeves you have.</a><br style="margin: 0px; padding: 0px;" />12. <a href="http://www.babymakingmachine.com/2013/05/typical-day-in-my-life.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="Describe a typical day in your current life">Describe a typical day in your current life</a>.<br style="margin: 0px; padding: 0px;" />13. <a href="http://www.babymakingmachine.com/2013/05/sucky-part-of-growing-up.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="What’s the hardest part of growing up?">What’s the hardest part of growing up?</a><br style="margin: 0px; padding: 0px;" />14. <a href="http://www.babymakingmachine.com/2013/05/the-good-the-bad-and-the-ugly.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="Describe 5 and weaknesses strengths you have">Describe 5 and weaknesses strengths you have</a>.<br style="margin: 0px; padding: 0px;" />15. <a href="http://www.babymakingmachine.com/2013/05/knowing-when-youve-met-the-one.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="Describe when you knew your spouse was the one or how I fell in love">Describe when you knew your spouse was the one or how I fell in love</a>.<br style="margin: 0px; padding: 0px;" />16. <a href="http://www.babymakingmachine.com/2013/05/5-accomplishments.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="What are your 5 greatest accomplishments?">What are your 5 greatest accomplishments?</a><br style="margin: 0px; padding: 0px;" />17. <a href="http://www.babymakingmachine.com/2013/06/if-i-could-be-great-at-anything.html" style="margin: 0px; padding: 0px; text-decoration: none;" title="What is the thing you most wish you were great at?">What is the thing you most wish you were great at?</a><br style="margin: 0px; padding: 0px;" />18. What do you think your spouse loves most about you?<br style="margin: 0px; padding: 0px;" />19. How did you feel the moment you became a parent?<br style="margin: 0px; padding: 0px;" />20. Describe 3 significant memories from your childhood.<br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">21. Describe your relationship with your parents.</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">22. Where do you see yourself in 5 years? 10 years? 15 years?</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">23. What’s your favorite holiday and why?</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">24. What’s your favorite and least favorite thing about parenthood?</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">25. If you could have dinner with anyone in history, who would it be and what would you eat?</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">26. What popular notion do you think the world has most wrong?</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">27. What is your favorite part of your body and why?</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">28. What’s your favorite quality in your spouse?</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">29. What are your hopes and dreams for your prosperity?</span><br style="margin: 0px; padding: 0px;" /><span style="color: #5a4f40;">30. List 10 things you would hope to be remembered for.</span></div>
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<span style="color: #5a4f40; font-family: verdana, arial, tahoma, sans-serif; font-size: x-small;"><span style="line-height: 18.66666603088379px;"><a href="http://weatheranchormama.com/?s=30%20things%20my%20kids%20should%20know%20about%20me">weatheranchormamma</a> is where I found this project. Over the next month or so, I hope to complete this project to get me back into blogging. It's something I need for me. So bear with me and the next post will be number 1 on the list!</span></span></div>
Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com0tag:blogger.com,1999:blog-431008621505335717.post-2262337340880414982013-10-03T00:02:00.000-04:002013-10-03T00:05:26.935-04:00An Overdue UpdateIt's unfortunate that I find myself updating this blog so infrequently, even now it's at the behest of a friend. The real problem is it's a mish-mash update and doesn't give the insight into life with a child with Spina Bifida that I was so hoping to provide to pregnant couples who just got their diagnosis, or parents of an infant with Spina Bifida, or even to update those who care about my family. Getting sucked up in long days and short months is just how it goes.<br />
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Anyway, Squish is doing great. I mean that, truly I do. Over the summer he went from largely non-verbal and signing to consistently using five word sentences. It blows me away and I love his little voice. His speech therapist is really impressed with his progress. Back in May, urology took K off his prophylaxis antibiotic. He was on that because there's just no way to do intermittent cathing without introducing bacteria and germs into the urinary tract. But he was doing so well, we decided to stop it. June, July, and August all had UTI's. Each one more serious than the one before it. August was a Staph infection. So, after lots of phone calls and having records and lab results faxed, we're back on antibiotics. I'm fine with that for now, but the ultimate goal is to not need them. As far as physical therapy goes, Kemper is now in a shoe insert, not a brace. He still has some balance and gait issues, doesn't run or jump, but he's on the move and he is quick.<br />
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Kemper's third birthday is fast approaching, and with that there will be much celebrating, with Mickey Mouse, as that's his jam right now, but there will be a ton of sadness too. He will be aging out of Early Intervention and moving into Exceptional Children for preschool. I am "losing" the people that have made giant differences in Kemper's life. His case worker, Jessica has been a shoulder, a support, a sounding board, and the doorway to improving Kemper's quality of life. He's had an Occupational Therapist that helped him learn to eat solid food without gagging. He's had a physical therapist who has worked with him since he was just a year old. She has developed his strength and helped him learn to walk and climb, and taught Brett and I how to work with him daily to keep developing. Speech Therapy, I can't even believe the leaps and bounds there. We started off trying to get him to consistently use the same vowel sounds, now he's saying, "I want Mickey Mouse, sausage, and fizzy juice, Mommy!" Aging out of this program brings me to tears. Not because he won't have access to therapy or I won't have a new case worker, but because I have a true love and appreciation for these people and how they have touched our lives. My son is doing all these wonderful things and I have such gratitude for these people for helping him. I'm tearing up now just thinking about this.<br />
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I've discovered that my predisposition to anxiety has a breaking point. All parents need help, no one can take on all responsibilities, put tons of pressure on themselves and succeed forever, and I found that out over the summer too. When cracks start to show, it's time to re-evaluate and take some things off your plate. For me to be the best Mom I can be, and a healthy person, I needed to change my ideas of what I had to be as a special needs parent, a stay at home mom, and an activist. I had to rediscover who I was and what I wanted to do as a person, not a parent. I had to give up some things on my schedule that hurt. Especially not participating in this year's Walk N Roll, but I needed to do it in order to be healthy.<br />
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Brett and I are enjoying every moment of being parents, some less than others, there's some whining and crying that 2 year olds do that isn't terribly endearing. However, a pudgy little hand wrapped around your neck and a sweet little voice begging for one more hug before bed will make our hearts explode. Of course we have our schedules, Brett's job is demanding but he spends as much time as he can with our family. We have multiple therapies, doctor's appointments, and typical household demands every week that make us tired just thinking about them. But we are learning to break things down into do-able chunks so that we can really enjoy our time together and our time to ourselves. Of course with Halloween this month, being that it's truly the most wonderful time of the year, our calendar is even more jam packed, and we are insanely happy about it.<br />
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Learning to shrug off the invisible weight of everything that isn't done and all the things that I cannot do is going to be a lifelong lesson. I will always have to work on that, because tend to freak first and think later. Diligence is something that luckily comes with the territory of being a special needs parent, so I'm a step ahead on that.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com0tag:blogger.com,1999:blog-431008621505335717.post-438680810113817382012-12-13T12:58:00.003-05:002012-12-13T13:00:05.697-05:00By The Time He's Two...The day after the ultrasound that confirmed Kemper had Spina Bifida, we went to see Dr. Culler in Chapel Hill, NC. He had previously worked with the MOMS study in which the repair surgery is done in utero instead of after birth.Our Perinatologist sent us to him for a second look and he said the words that helped me pull my broken heart and shattered dreams back together.<br />
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"By the time he's two you may never even know he had Spina Bifida."<br />
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Not a guarantee, not a certainty, but hope to cling to that my baby would have a shot at typical. Thing is, back then I didn't know much about Spina Bifida so I wasn't sure what I was hoping for. All I knew was that what the Perinatologist had to say had been the most frightening, disheartening, terrible future for our baby. <br />
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Turns out, that's pretty normal when you're delivered the Spina Bifida diagnosis. I believe it's a combination of CYA (cover your ass) and outdated information. It takes a very long time for the standard of care to change and for information to be up to date for doctors that don't deal with Spina Bifida every day. <br />
Dr. Culler gave us a better informed, more realistic set of expectations because his career included ground breaking surgery on a fetus's spinal cord. I'm not saying that's what it takes to get informed doctors, but it feels pretty close to that sometimes.<br />
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Anyway, let's fast forward two years. Turns out that Kemper still noticeably has Spina Bifida and that is OK. Lots of things have changed, lots of things are better than we ever hoped, and I've made some fantastic friends in the SB community. I will say this, Kemper has very high functioning for Spina Bifida, his lesion is sacral, and he can walk. So, I suppose on the outside if you look at him, you see a typical child. But he's got a ton of stuff going on medically and developmentally. Again, not as much as most kids with SB, but he's still got it happening.<br />
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I continue to digress. My point is this, if you told me two years ago that there would be a point where I could cath him in an airport bathroom with people staring and not bat an eye, I would have called you a dirty liar. If you told me that I would get through sending him to the OR 5 times without fainting, I wouldn't have believed you. If you said, you're going to get to the SB Conference and meet all these people who've supported you in your journey, I would have said Kemper was far too fragile to travel. He flew twice this year and took countless car trips with me. He fell on his face, slammed his fingers in doors, threw tantrums, and all kinds of other stuff too.<br />
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This is our life. Kemper is our world and he is living. Yeah, he's got Spina Bifida, but in a way, that doctor was right. It's not the first thing we think of anymore. Yeah he wears braces, yeah, he's got a shunt, etc, etc. No big. I can't believe I reached this point, so I guess it is a big deal. I want all the newly diagnosed parents out there to know that this place exists. I'm settling in and grabbing a drink with an umbrella in it, I'll see you here in a couple of years. Until then, if you need me, I'm there.<br />
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Happy Birthday, Kiddo. :)Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com2tag:blogger.com,1999:blog-431008621505335717.post-11088217432066336722012-07-07T22:42:00.004-04:002012-07-07T22:46:17.526-04:00My First SBA Conference 2012This year I was fortunate enough to attend the Spina Bifida Association's 39th Conference in Indianapolis.People have been abuzz in all the SB groups on facebook, including my group, Living With Spina Bifida. It's been a personal goal of mine to meet some of the delightful people I've had the gift of meeting in the online Mom and SB community. It was exciting to count it down with friends and talk about meeting up in the lobby. There were so many sessions I wanted to attend, so much going on, so many doctors and speakers and vendors. The Cincinnati Children's Hospital Colorectal Center was presenting and had a booth. A million medical supply providers for catheters and orthodics, different wheelchair vendors, the ZipZac chair, armtrykes, standers, service dogs, latex allergy groups, and so on. Jean Driscoll spoke at the celebration luncheon and she is an amazing athlete and speaker. My homie Erica Hoke Potter won an award for her fundraising efforts for 4 before the 4th. They shined the spotlight on some really awe-inspiring people who are doing important things.<br />
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This trip had me pumped. Super pumped! However, it was a journey fraught with trouble. It was cancelled flights, bodily fluids, personal injury, and Hell on my back. I could be heard saying I was never going to leave my house again after this trip. Kemper is still out of sorts over a week later and missing a piece of his top front tooth. Thankfully it's a baby tooth, but still, a chipped tooth. I'm nursing a 2nd degree burn on my hand, and some of our clothes were thrown away. I had a big stroller, diaper bag, cath bag, carry on, a suitcase, and my car seat. It was ridiculous. And so hot, dude. Crazy hot.<br />
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I'd go again in a heartbeat though. The bond between the people in our community is strong, for the most part it was like getting together with old friends. The information and networking at the conference was absolutely worth the trip. Kids Camp was fanastical, the girls running it have a sister with SB. They were great with my son, and with the clingy Mom. (It was the first time I'd been away from him like that, c'mon, that was hard!) The tips and pointers and feeling of someone really knowing what your life is like and understanding how hard and how wonderful the day to day can be is so awesome that it makes me a little emotional. My heart was usually soaring or breaking, I cried a little, and I got some really solid information and feel like I have a plan for Kemper. That feels freaking amazing. It's like you're bursting with renewed energy to be home from conference. You have all this information and data and know what you need to work on, and it's rejuvenating to the spirit to have that burst of steam to do something great for Kemper. It feels good to have a plan and goals and ask panels of experts questions and get answers and suggestions that are working.<br />
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If someone asked me if conference was worth the hefty tag of attendance, hotel, and airfare, I'd say without a doubt YES. Also, it's pretty sweet to stay in a swanky hotel and go to receptions and have wine and catered breakfast and lunch for a few days with some really nifty peeps. <br />
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Next year will be a little different with mini conferences, but I still plan on going to whatever they have, and participating in the SBANCSC Walk n Rolls this coming year. This is my cause and I have renewed vigor.<br />
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<br />Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com0tag:blogger.com,1999:blog-431008621505335717.post-87758665479714207392012-03-29T20:18:00.000-04:002012-03-29T20:18:46.396-04:00Brace YourselvesKemper got the DAFO's, I talked about that in my last post. I was nervous about them and not looking forward to it, I tried to look on the super bright side, but I have a way with the opposite occasionally.<br />
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I took him to the orthotist's office and a giant man who looked like a cross between Mr. Clean and one of those old time-y muscle men with a mustache came in and fit him. He said they fit great, his shoes were fine, and he sent me on my way.<br />
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Well, there was the whole insurance/ CDSA/ pay out of pocket thing, which got straightened out, but there was a thing. I'm still waiting on a refund check. Lesson to myself, always call before something new to find out if it's covered. But I digress.<br />
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He came home in them, didn't care for them, I worried and fretted. Kelly, Squish's PT came out and got him to do stuff he hadn't done before. He works for a solid hour with her on standing, cruising, stepping, balance, etc. After that, we put him in the braces for an hour a day. Now we're up to 3 hours a day.<br />
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He is pretty close to independent steps. He's taken quick stumbling steps on his own, and he walks to the mailbox and back holding my hand. He will walk all over the house holding a hand to give our dog treats. He'll cruise between furniture for books and toys and cheerios. It's been pretty awesome to watch. He's making mighty strides in his strength and stamina. He can even stand up alone until he realizes he's not holding on to anything.<br />
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He's pretty much teaching me at every turn that my worrying is nothing compared to his resiliency and determination. He's like sunshine chasing my gloomy clouds of doubt away, even when he doesn't succeed at something, he tries again with a smile on his face.<br />
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I gotta tell ya, this Mommy thing is pretty cool. For your enjoyment, I've included a picture of Squish rocking his braces. He's pretty adorable. <br />
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So until next time, I wish for you to find a little bit of sunshine to wash your worries away.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com1tag:blogger.com,1999:blog-431008621505335717.post-29583806854569593742012-03-03T20:21:00.000-05:002012-03-03T20:21:51.172-05:00Surprises.I've never been fond of surprises. Surprise parties invite me to be as awkward as possible and most likely un-showered. Surprise gifts make me almost as awkward. I give my husband a list for holidays and my birthday. He doesn't care for that part of my personality because he likes to surprise me. I hate I ruin it for him by continually asking if he stuck to the list. Most of the time I end up with presents early because of the questions. I plan our getaways, day trips, doctor appointments, all that stuff... it gives me the illusion of control and surprises knock me off my game. If we do something spontaneous, it was absolutely my husband's idea.<br />
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That brings me to surprise DAFO's. That stands for Dynamic Ankle Foot Orthosis. When Kemper was in the womb we were told many times that he would be a walker. I believed it because he kicked me like he was rave dancing in my womb from the first time I felt him move until he was delivered. He wiggled and pushed and strained and ended up in a downward dog on his face in his isolette. He popped stitches because he moved so much. He crawls, he pulls up and cruises. Everyone talks about how he's going to walk and need little to no help. That was until he went to the Orthotics guy. Then the PT and this guy I just met decided he needed DAFO's. <br />
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That's a brace that goes up his shin, with straps. That was a surprise. And I didn't like it. The PT tells me, "It's temporary, when he's got this we'll cut them down to AFO's and then he'll move to a shoe insert." When you ask a PT why all of a sudden it went from shoe inserts to big honking plastic braces, it's best not to mention you fear punching people in the face for staring. That tends to confuse and frighten people who don't get me. Would I punch someone in the face really? I'm not ruling it out, but 99% of the time, I bet I could manage not doing that.<br />
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See I'm sidetracked. It's not even really staring that bugs me here. Some of it is the shock of the sudden change, which has been explained to me, but I'm still not a big fan. Then there's the whole make him wear them, look out for redness, blisters, and pressure sores. What if he hates them?<br />
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I had a cat a long time ago that I thought I could put on a leash. I also thought I could train him to use the toilet, but that's a story for another time. Well, I would put this harness and leash on the cat and suddenly, he was rigor mortis like those fainting goats. Would. Not. Move. He would have made a convincing stuffed animal in that situation were it not for the flattened ears and look of contempt in his eyes.<br />
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Is this what it's going to be like with poor Squish? I strap him in braces and he won't move? Or he goes tomato face and wails. Doing what you know is best for your child is tough enough, then add the fact it's not something I'm too thrilled about on top of the possibility that he may hate them and you have a pretty stressed out Mamma Bear.<br />
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They aren't even in yet, though, only ordered. So here's hoping I strap him in and he thinks they're the coolest. That would work. I've even tried to daydream to a Forrest Gump type scenario, we strap them on and he takes off. I'm aware that's a day dream. I'm fully expecting good and bad days. For the moment, I'm coming to terms with him needing braces. It's the only thing about him that would broadcast to the general public that he has Spina Bifida and that is the part that I think will be hard for me.<br />
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There will indeed be an update in the near future about how the braces are doing for him, how he handles them and if I punched anyone in the face I'll be sure to include the police report.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com3tag:blogger.com,1999:blog-431008621505335717.post-69038986800660498222012-01-09T21:17:00.000-05:002012-01-09T21:17:06.112-05:00The "R" WordThis post is tough. Not everyone agrees with how I feel about the word retarded. I used to be one of those people. Things change.<div><br />
</div><div>When I was a kid, it was a thing to slap your hand and forearm against your chest in a flopping manner and talk with a forced speech impediment. That was supposed to be a burn, a joke, calling the person you were talking to retarded. I don't know if kids still do it, but the thought of it now makes me cringe.</div><div><br />
</div><div>I've said this before, I used to use the word retarded in such a way that it was a slur. When you take the word and use it out of context it takes on a negative connotation. Now people will say they would never refer to a child with MR as retarded. This baffles me. Yes, they have changed all the labels, do you know why? Because the word retarded has taken on such a negative connotation. Now it's a put down, a way to call someone stupid, to refer to yourself as forgetful, etc.</div><div><br />
</div><div>The odd thing is how vehemently people will argue to be able to continue using this word in a hurtful way. Arguing syntax, arguing definitions, posting the dictionary entry. The word has it's place in engineering, mechanics, music, etc. Not to describe how silly you feel for forgetting your lunch. Not to call someone stupid. I suppose this is piggy backing on me posting a blog link on my wall to "Herding Cats." It's a blog written by a woman whose daughter has MR and how people use the word retard or retarded in an insensitive way. I linked it to my facebook and all Hell broke loose.</div><div><br />
</div><div>My son doesn't have MR. He's got Spina Bifida, hydrocephalus, a VP shunt, a neurogenic bladder, hydronephrosis in one kidney, reflux, texture issues with feeding, a hydrocele (hernia), and he lacks the dorsi flexion in his feet he needs to walk properly. He's already been referred to as retarded by ignorant people. He has had multiple surgeries, has OT, PT, has had UTI's, been hospitalized, and goes to the doctor so much that everyone at the front desk knows him. He has to fight so much, just like all special needs kids. These kids fight EVERY. SINGLE. DAY. for things most people take for granted. Why do people want to add to their fight by throwing around a word that can cut so deeply?</div><div><br />
</div><div>That's why I'm so passionate about ending the use of the word retarded as a put down or way to describe how slow you are getting started in the morning. I'm a special needs mother and I want to advocate for the whole community. </div><div><br />
</div><div>Why would you argue to continue being able to say something that can be so hurtful? This is the part that truly confounds me. Is it selfishness? Is it the perception of being told what to do? I don't understand it. I can't imagine anyone giving an explanation that would justify this in my mind. That's where I leave this post, I drew my line in the sand and it makes me mad as Hell that we even have to have a line. If you disagree with me, that's fine for you but this is not an agree to disagree situation for me. This is a deal breaker. I'll not suffer fools on this issue.</div>Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com6tag:blogger.com,1999:blog-431008621505335717.post-28629278640775100022011-12-17T22:34:00.000-05:002011-12-17T22:34:56.666-05:00A Year, Summed Up.I've been really neglectful of my blog and while my dear readers, all 3 of you, may have given up on me, I've realized that I need this. Getting my clunky thoughts out is therapeutic for me. Here we go.<br />
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Squish turned a year old already. I don't know where the time went. I picked up a tiny baby, held him close to me, and when I went to put him down he had 6 teeth and liked to smack my boobs. He is a gibber-jabbering hedonist who loves to cuddle. He can get from the bathroom to the kitchen dog door in less than 20 seconds, little tushie swinging with the effort of his all fours crawl. He's gorgeous. He's sweet. He's kinda whiny and clingy. I love him.<br />
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Watching him learn and grow has been wonderful. Getting through the hospital stays, the CT scans, the UTI's, the surgeries, and that sort of thing has been crappy. He was a vomit fountain for about 4 months with reflux. I may as well have been doing laundry for a small hotel. Through it all, he's kept his easy going demeanor. I wish I were as laid back as Kemper. In the face of all adversity he's had, he meets it with a smile and just won't give up. Much like the boob smacking. I can stop him and say no all day long, he just grins at me and smack, smack, smacks.<br />
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There are a lot of people I couldn't have made it through the year without. There's no way I can properly show my appreciation to them. So, I'm using this blog post to repeat some of the best advice I've gotten through the year and give some of my own to people who may be in the same spot I was last year this time.<br />
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<b>Great Advice: </b>(As I see it.)<br />
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<b><u>Have a support system.</u></b> Yeah yeah, everyone says that. It's true, you need it. But you need people who are familiar with Spina Bifida. So, if no groups are available locally, go to the internet. It could take almost a year to weed out the people that you ONLY have SB in common with and make some friends. I'm so glad I did. I have some true homies. There are groups on babycenter and facebook for Spina Bifida. Hell, I even run an SB group on facebook! <br />
I'm telling you it's the friends you make that will be your rock. Sure your family means well, sure your friends are supportive, but these people know what you're going through. They've been there and most of them are willing to offer advice and support.<br />
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<u style="font-weight: bold;">Do not let a digitized ribbon confuse your heart.</u> I know lots of people that I didn't know before I had a baby. Many of them are new moms like me. Many others are people I met through SB resources. Some of them are just ridiculous people with nothing to contribute but sucking the very life out of you. Don't let them. Come SB awareness month when they plaster their facebook with ribbons, don't feel like you owe them something. You don't.<br />
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<b><u>Don't let this change who you are!</u></b> Your child needs you to be you. Don't go changing because you think you have to in order to be a great parent. A great parent is made by someone who is secure in who they are. Also, you can't live wallowing in "why me" or "my child can't..." Keep living like you did before, enjoy life so your child can too. A miserable parent makes for a miserable child.<br />
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<b><u>Trust your instincts.</u></b> Yeah, the doctor at your pediatrician's office has a degree. Yes, you should trust him on lots of things. But when it comes to Spina Bifida stuff, call the neurologist, urology, ortho department familiar with your child's care! Remember that you know your child better than the doctor who sees him for 20 minutes every so often. <br />
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<b><u>Your spouse is not you.</u></b> Sounds simple, but it's all too easy to forget. I was diving headfirst into research, books, scientific data, joining groups online, trying to reach out to local people. My husband mostly relied on the doctors and me for information. At first it upset me, but I realized that he deals with things differently than I do. He was willing to take the information as it came. I wanted to know everything NOW!<br />
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<b><u>Therapy is OK.</u></b> I'm in therapy. In the same vein as my need to have all the information lined up for me, I hate surprises, and I have an anxiety... problem. Because I'm high strung and a little scary sometimes. So, therapy is a great idea for me.<br />
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<b><u>Know your insurance.</u></b> Seriously. Stay on top of it. There's a million and one things you have to do every day, I know. But every dime counts. Don't let a misfiled form or something take money away from your family.<br />
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<b><u>Use a beach towel.</u></b> If your kid spews like a geyser... screw the burp cloths, move up to beach towels.<br />
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Alright. My little bag of wisdom is just about empty. Just remember above all else, your baby is just that, your baby. No matter what challenges lay ahead of you. You can do this because you really have no alternatives. You'll rise to meet whatever comes up and if you're lucky, you'll make some damn fine friends along the way.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com4tag:blogger.com,1999:blog-431008621505335717.post-34050070554004946062011-12-05T21:39:00.001-05:002011-12-05T21:39:11.827-05:00Photo Card<div class="sflyProductPreviewWidget" style="width:425px; height:494px;"><div class="sflyProductPreviewWidgetTop" style="height:6px; background-image:url(http://cdn.staticsfly.com/img_/share/preview/msc/widget/top.gif);"></div><div class="sflyProductPreviewWidgetCenter" style="height:482px; padding: 0 6px 0 6px; background-image:url(http://cdn.staticsfly.com/img_/share/preview/msc/widget/bg.gif); background-repeat:repeat-y;"><div class="sflyProductPreviewLogo" style="width: 105px; height: 34px; padding: 14px 0 0 14px;"><img src="http://cdn.staticsfly.com/img_/share/preview/msc/widget/logo.gif" style="padding: 0; background: #ffffff; border: none; box-shadow: none;"></div><div class="sflyProductPreviewContainer" style="height:350px; text-align:center; padding: 0;"><a href="http://share.shutterfly.com/action/welcome?sid=0CZMWrlqzbM3Ow&cid=SFLYOCWIDGET&eid=115"><img src="http://images-community.shutterfly.com/prs/v1/0CZMWrlqzbM_/0CZMWrlqzbM_dD/p/67b0de21b3127d902548/JPEG/1323139140000/0/" style="padding: 0; background: #ffffff; border: none; box-shadow: none;"></a></div><div class="sflyProductPreviewMessageContainer" style="height:55px; background-color:#f4f4e9; text-align:center; padding: 15px 0 15px 0; line-height: 19px;"><div class="sflyProductPreviewTitle" style="font-family: arial, sans-seris; font-size: 15px; color: #333333; font-weight: bold;"><span>Picture Tree Christmas</span></div><div class="sflyProductPreviewSEOText" style="font-family: arial, sans-seris; font-size: 13px; color: #333333;"><span>Design photo Christmas cards at <a href="http://www.shutterfly.com/cards-stationery/christmas-cards" style="color: #6666cc;">Shutterfly</a>.</span></div><div class="sflyProductPreviewViewCollection" style="font-family: arial, sans-seris; font-size: 13px; color: #333333;"><span>View the entire <a href="http://www.shutterfly.com/cards-stationery" style="color: #6666cc;">collection</a> of cards.</span></div><img width="1" height="1" border="0" style="padding: 0; background: #ffffff; border: none; box-shadow: none;" src="https://os.shutterfly.com/b/ss/sflyshareprod/1/H.15/111?pageName=sharekey&c1=msc&c2=blogger" /></div></div><div class="sflyProductPreviewWidgetBottom" style="height:6px; background-image:url(http://cdn.staticsfly.com/img_/share/preview/msc/widget/bottom.gif);"></div></div>Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com0tag:blogger.com,1999:blog-431008621505335717.post-28916273107575007532011-09-05T11:06:00.000-04:002011-09-05T11:06:43.503-04:00Dear Universe, That Horse Is Dead.In other words, I get it. I understand that you can't plan everything to the letter and expect it all to go off without a hitch. I've gotten that lesson in spades by now and I think I'm learning to roll with what comes. <br />
The thought that this is all preparing me for something bigger kind of makes my head hurt because <b><i>I</i></b><i style="font-weight: bold;"> don't like it </i>when plans go awry, but I'm trying to accept it. <br />
Recently, my family had plans. My sister had plans for a great summer with her family, enjoying the pool with her kids and doing what she loves, running. Instead she had to have shoulder surgery after being injured by a student at the school where she works. She's coping with a lot of grief in this situation, she is grieving her summer of carefree fun, her ability to be independent, her feeling of safety at work, her feeling of value from a certain co-worker, and more. I can't begin to tell you how frustrated and upset I've been on her behalf, but that doesn't begin to cover what she's been feeling.<br />
I tell you this because a couple of weeks ago, we had a big family vacation. We do it every year, my sister and her family, my Dad and sometimes his fiance (she couldn't come this year) and my family. This year, my sister had to sit in a therapy chair that did PT on her arm 3 hours a day while hooked to a tins unit. This year, she had to ask me to put her hair in a ponytail, she couldn't hold her nephew other than posing for pictures, and she couldn't play with her children. Maybe the Universe is taking her to school too, but I it sucks for her! Because on top of that, we had an earthquake that shook the condo we rented and left us scrambling to get in touch with friends and family that were in the area where the quake hit. Because if we felt it at the beach in North Carolina, we couldn't imagine what it was like where the quake was centered. Thankfully, we reached everyone in great shape.<br />
Kemper was great when we arrived, but no sooner had we unpacked he started getting sick. He was congested and vomiting without a fever. We treated him over the counter, but I have to admit, I was so happy it wasn't our carpet he was anointing, because it was nearly constant. He improved over a couple of days, but we were new parent train wrecks. Do we take him home to his pediatrician? Do we wait it out? We worried, fretted, took it easy with him, and worried some more. Then all of a sudden, he improved to the point we thought we could just relax for the rest of the week.<br />
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Then... Irene caused some issues. We had to end our vacation early because the island we were on was under mandatory evacuation orders. My husband went home to our dogs and house, which was just out of the projected path of the hurricane, and I took Kemper and fled inland to a motel room. I spent two nights there wondering if my husband and home and dogs were ok while trying to keep up with what the storm was doing. <br />
Walking in the front door was so very sweet it competed with my return after seven weeks at Duke. Home. Ah.... a breather. Then full force sick baby again. He's been back to the doctor and had an Upper GI which of course, I have to wait through the holiday weekend for results. Of course.<br />
So in my defense, I'm trying really hard to roll with the punches and continue to throw the plan out the window, but it's not easy. So not easy.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com2tag:blogger.com,1999:blog-431008621505335717.post-15115874539674783732011-08-02T18:54:00.001-04:002011-08-02T19:02:37.473-04:00You Know What Assume Means!Being proven wrong. Not something people typically enjoy, but as one of the many Moms of a child with Spina Bifida, having my son exceed expectations in the simplest of things can be joyous. Many of the Moms I've met will post a picture of their child with the caption, "Take that, Spina Bifida!" Seeing these pictures makes my heart sing, fills me with hope, and allows me to celebrate with their family. <br />
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</div><div>There have been so many instances where people have been wrong in their expectations with Kemper. I relish in these because he's busted through so many assumptions and limitations that people have projected on him based on the term Spina Bifida without considering him as an individual.</div><div><br />
</div><div>The perinatologist who told us about his diagnosis said he'd probably be paralyzed and have some mental retardation. She said his lesion was affecting 5-6 vertebrae and was very large. This is not true for my son. He has movement and sensation in his legs and feet, he's right on track developmentally, and the lesion was less than a centimeter in diameter.</div><div><br />
</div><div>Nurses in the NICU told us that he would always "ooze" poop because of the nerve damage. That he would always vomit because of neurological issues. They didn't take into consideration the antibiotics he was on that loosened his stools or that he could have reflux, which he does. When he was admitted to the hospital locally due to a GI virus, the nurse thought she was in the wrong room because he was kicking. She assumed he wouldn't be able to move his legs. </div><div><br />
</div><div>His most recent accomplishment that says, "TAKE THAT!" He can bear weight on his legs.</div><div><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-grNyzJVXfb0/Tjh9VRCTneI/AAAAAAAAAOc/5o_SQaWjVEE/s1600/Kemper+Standing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-grNyzJVXfb0/Tjh9VRCTneI/AAAAAAAAAOc/5o_SQaWjVEE/s320/Kemper+Standing.jpg" width="178" /></a></div><div> </div><div>Talk about having your heart soar. We were on cloud nine for quite some time on that one! </div><div><br />
</div><div>He teaches me about making assumptions too. We took him to the doctor a couple of days ago and I undressed him so he could be weighed. I was telling the doctor how terribly constipated he was and as if on que, he pooped. On their wall. I still don't know how the poop ended up on the wall, but I was mortified. After we got him cleaned up I picked him up, he was still naked, and I was talking to the doctor about how he doesn't pee on his own anymore. That's when he peed down the front of my dress. Talk about a flair for the dramatic to prove me wrong and teach me about making assumptions!</div><div><br />
</div><div>Every kid with this diagnosis is a kid. An individual. We take something out of them when we assume their capabilities. The only thing I really know for certain is that Kemper has my heart on a string.</div>Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com10tag:blogger.com,1999:blog-431008621505335717.post-16152001309904423442011-07-19T16:12:00.000-04:002011-07-19T16:12:47.984-04:00Strap In!Have you ever stopped in the middle of doing the 5784th thing for the week and thought "I want off the ride now!" I mean, it's not like you don't want back on, it's just a nice break to sit on the bench and have a shaved ice or an $8.00 Pepsi. Then back to the nausea inducing pace, for sure. Because that bench gets boring, and it's hot just sitting there without the whooshing wind just blowing your hair back on that exciting ride. But when the ride gets scary, overwhelming, and stressful; I know I want a break. You probably would too.<br />
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Right now, I'm kind of there. I want to sit down and leisurely have a cool refreshing break. Much like any ride that's already started, there's no way off until it's over. So I am just going to throw my hands up and scream, which should be interesting if you see me around town, just wave. There is a lot going on right now and the most anxiety inducing of all of them is a cardiology appointment for Squish. He had a flow murmur and the doctor wants to see if it's closed on it's own. If it hasn't there could be a heart surgery on the table. For the sake of my sanity and the feelings of everyone I know, let's hope this isn't the case. For that would be like that ride going off the tracks and plummeting straight into Hell for me. <br />
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Yes, I am aware that this surgery is common. Yes, Squish is a freakin' rock star. I know it would be temporary recovery. Amid all the rational thought and reason there is this... I'm scared. I don't want my sweet baby boy to have another surgery. I don't know if I could handle handing my son over to yet another anesthesiologist as I kiss him goodbye and tremble with worry over the million things that could possibly go wrong. Watching him wake up, swollen and groggy, is no picnic either. But these things are nothing compared to him howling in pain when he's awake and whimpering pitifully in his sleep. He hasn't slept well since his shunt revision. He fights falling asleep and wakes up more during the night. Is it related? Probably not. Does it make me wonder if he's afraid of what will happen to him if he falls asleep? Sometimes.<br />
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In the end, it will work out. This ride... life... will hit the bumps and smooth straight paths, and in the middle of the loop da loops somewhere you can close your eyes for a second and know that when it does end, you'll want to go again. It's getting to the top of the hill, that clank, clank, clank of being pulled up, that gives you long enough to worry. Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com1tag:blogger.com,1999:blog-431008621505335717.post-47420773823710735992011-07-16T22:21:00.001-04:002011-07-17T21:02:05.732-04:00An Ugly PlaceThe internet can be a really ugly place. Most of the time for me, it's for research, friends, meeting people, and sharing experiences. Ok, I admit there is also a piece there for time wasting funny sites and games, but mostly I use the internet constructively. So when a Mom I know from a support group was upset at the treatment her child received when he attempted to enter a store using his walker at a business near her, many of the group members were upset in turn.<br />
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A news station local to this person picked up the story and ran it on the news and their website. Websites are open to comments. Sadly, a lot of these comments were either intentionally mean or really ignorant. When I voiced my opinions, a person claiming to be a relative of the business owner actually blamed me for my son's Spina Bifida, saying that according to other sites I have, I drank and did drugs and it was probably an unplanned pregnancy. While that is certainly not true, I couldn't believe someone I don't even know could be so upset by my opposing opinions on the internet that they would lash out so personally.<br />
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It seemed impossible to me that people were getting so vicious regarding what I see as a clear cut issue and regarding a child. How can people NOT understand this is discrimination? My point of view is up close and personal so I took a step back... am I being overly sensitive about it? The conclusion I came to is that no, I'm not. ADA guidelines require businesses to be accessible to people with disabilities, it's Federal Law.<br />
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Then I realized that I'll be facing this sort of attitude on my son's behalf for a long time, but he'll face it for the rest of his life. I'm profoundly saddened at the thought. He's a sweet, lovable baby right now and with a lot of work and a little luck, I hope to see him grow into a bright young man of good character. But there will always be people who will think of him as "less than" a person. Those people are wrong, their attitudes stink, and a little education, if they are willing, would go a long way. That won't always be an option, I understand that. It's unfortunate that so many are comfortable with their closed minds and ignorance.<br />
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While the experience has led me to realize that anything can be taken out of context, some people are just jerks, and being open leaves you exposed to those jerks. I'm thankful for the thick skin I'm developing, but I think I'll lay off the comment boards for news stories as I've found that the loudest voices there are the ones with the most tightly shut minds.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com6tag:blogger.com,1999:blog-431008621505335717.post-36746200211025666452011-06-03T12:48:00.000-04:002011-06-03T12:48:33.412-04:00Nowhere LandBeing a part of the SB community has been my saving grace time and time again. There have been people to educate and comfort me, to tell me what to expect, to remind me to count my blessings, to listen when I rant and to listen to when they need to rant. The importance of this community in my life is vast. My desire to give back is also strong.<br />
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However my family doesn't always fit in with the community. Adults with SB grow weary of parents asking the same questions over and over about their children. My son is someone with SB who is expected to walk. My son has only had 4 surgeries, and that may seem like a lot, but it can be a drop in the bucket for many in the SB community. We met a 12 year old who gets around in a wheelchair and has had 42 surgeries at clinic. How does one run to people with such patience and strength to whine about a shunt revision? The truth is, many of my peers in this community have much more to deal with on a daily basis. I do not have the energy or patience yet to tolerate rude strangers for the sake of being an ambassador for SB. Many people I've met in the SB community grit their teeth at the stares and intrusive questions and take time to educate people.<br />
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My family doesn't fit in with the non SB community either. "He's all special and stuff," a family member said to me once, despite having no ill will behind it, it sticks with you. Other women with babies around the same age post things about wishing their baby wasn't mobile, pushing them over with their foot because they aren't ready for them to move so much, or saying they aren't ready for the milestones. I feel a twinge every time I read something like that, but I'm unsure how I'm supposed to react. I rejoice every single toe wiggle, wobbly attempt at sitting up and anything remotely crawl like. When you look at Kemper's pictures, everything seems fine, his development for the most part, is on track. But it makes my chest hurt when people I love say, "You'd never know anything was wrong with him."<br />
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Lets get something straight, there is nothing wrong with Kemper. He is not "special." He is living with SB and has needs that coincide with that. Will I be angry if you use the word cripple in front of me? Yes. Thankfully when this did happen I was able to take a breather and come back to discuss it calmly, finding out that the person who used it has family with disabilities who used the word cripple to describe themselves. She meant no offense. Will I dislike it if you use the word retarded the way I used to, without cause or care of how it may affect someone who overhears? Yes. While Kemper's SB is a physical disability, my way of thinking has changed. The world is bigger than my family, than the SB community. Everyone deserves privacy and respect.<br />
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Still, this leaves us in a perceived no man's land, stuck somewhere between communities. I'd like to say there are no lines, but there are. Maybe one day I'll find my niche in blurring those lines. But for now, I'm struggling not to rage on people who stare at Kemper's head incision. Thankfully, no one has asked about it while we're out in public.<br />
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Truth be told, I don't look very approachable, but I never thought it would serve me so well. Later on down the line, when I've figured out how to handle these things, perhaps I'll greet stares with a smile. But I kind of doubt it. So, I'll just take a deep breath, enjoy my baby, and do what comes naturally, not worry about fitting in.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com10tag:blogger.com,1999:blog-431008621505335717.post-18695686268730220792011-05-27T13:29:00.001-04:002011-05-27T16:25:25.043-04:00The Revolving DoorI'm still playing catch up here! Sorry about that! I used to think that people were exaggerating how tiring, needy, and time consuming newborns are, I have since learned that they were actually holding back. I've never been so tired in my life. I've never worn my hair in a ponytail for 6 months before, either! <br />
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Sorry, the point of this post isn't for me to rehash how rough having a baby is, but to catch up on my Squish! So we got him home from the hospital and had about 4 days before we had to take him back. He had a GI virus. He spent 2 nights and was home again.<br />
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About 3 weeks later, he developed a truly nasty UTI and was in the hospital for 5 days. I lost all composure at that point. It was a deep, dark hole thinking that this was going to be our lives. In and out of the hospital, back and forth to the doctor, watching Kemper be poked, be sick, be sad. I had to be peeled off the floor of the hospital bathroom, sobbing so hard I was unable to see or speak. Brett was beside himself, the doctor and nurses were concerned, and I realized I couldn't cope with everything he was going through on my own.He got out of the hospital, I started counseling. Things started to get back to normal. He started to thrive and it was awesome to watch.<br />
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Don't get me wrong, we've had a few ER trips, a few big scares, some tears and some anger, but overall, we're all doing well. I took Kemper to visit my sister's family and while we were there, his shunt site started to swell. He started to vomit a lot. I took him to Duke and he had to have a shunt revision over Easter weekend. But, we made it home on Easter and he even felt well enough to sit up for pictures.<br />
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This kid has been in the hospital or at a follow up appointment at Duke for every holiday since he was born in November. He was even in the hospital for the Super Bowl! It's Memorial Day weekend now, and I'm hoping he'll break that streak. Fingers crossed everyone!<br />
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That tough baby is growing, learning, hitting milestones and somehow making my heart grow with him. I've never been so full of joy. My husband and I are both in awe of this little child and the way we feel about him.When I walked into the kitchen and came back and he was across the living room floor from where I put him, I jumped up and down. He giggled at me. When he pulled his paci out of his mouth and passed it between his hands before dropping it and shrieking with glee, I clapped. When he started trying to push his body to crawling position, I was dumbfounded and rubbed my eyes. He looked back at me grinning and tried again as if to say, "Yeah, Mom, I'm doing this... get ready to be amazed."<br />
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Without our friends and families, this would be nearly impossible. Our families have supported us, despite any disagreements, hiccups, or hurt feelings, at the end of the day, we are there for each other. We have felt the kindness of strangers, the compassion of acquaintances, the love of our friends and we're so thankful. We've also felt the grace of God, whatever you envision him to be. We believe we are being watched over.<br />
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While we know that this is not the last trip to the ER and probably not his last surgery, we feel more prepared to get through them. We know that the doors to the hospital work both ways and when you go in, you still get to come out.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com2tag:blogger.com,1999:blog-431008621505335717.post-87261667821949769692011-03-20T14:52:00.001-04:002011-03-20T14:52:39.911-04:00Squish<object width="425" height="425" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab" classid="clsid:d27cdb6e-ae6d-11cf-96b8-444553540000"><param name="movie" value="http://images-community.shutterfly.com/flashapps/flashslideshowphotobook/slideshow_pb.swf"/><param name="flashvars" value="xmlURL=http%3A%2F%2Fws.shutterfly.com%2Fpsdata%3FprojectGUID%3D0CZMWrlqzbM_cW%26uid%3D003063595102%26size%3D0%26ts%3D1300647116000%26height%3D425%26width%3D425&size=0&ob=0&fc=0&ss=0&sb=0&ft=0"/><param name="menu" value="false"/><param name="quality" value="best"/><param name="wmode" value="transparent"/><param name="allowScriptAccess" value="always"/><param name="allowFullScreen" value="true"/><embed width="425" height="425" align="middle" pluginspage="http://www.macromedia.com/go/getflashplayer" type="application/x-shockwave-flash" name="wrapper" quality="best" menu="false" allowfullscreen="true" allowScriptAccess="always" flashvars="xmlURL=http%3A%2F%2Fws.shutterfly.com%2Fpsdata%3FprojectGUID%3D0CZMWrlqzbM_cW%26uid%3D003063595102%26size%3D0%26ts%3D1300647116000%26height%3D425%26width%3D425&size=0&ob=0&fc=0&ss=0&sb=0&ft=0" src="http://images-community.shutterfly.com/flashapps/flashslideshowphotobook/slideshow_pb.swf"></embed></object><p style="width:425px;margin-top:0;text-align:center;"><a href="http://share.shutterfly.com/action/welcome?sid=0CZMWrlqzbM3GQ&eid=115">Click here to view this photo book larger</a><img width="1" height="1" border="0" src="https://os.shutterfly.com/b/ss/sflyshareprod/1/H.15/111?pageName=sharekey&c1=photobook&c2=blogger" /></p>Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com0tag:blogger.com,1999:blog-431008621505335717.post-58328556340938740642011-03-18T13:16:00.001-04:002011-03-18T13:47:36.811-04:00Seven Weeks and One DayThat's how long we were in the hospital. Seven weeks and one day. That's a long, long time. Five of those weeks were in the NICU. The last Two and a day were on the pediatric floor, where I got to learn to be Squish's Mom.<br />
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The day after he was born, he went in for surgery. Dr. Fuchs, a pediatric neurosurgeon came to see us and report that it went very well. When we were allowed to go see him, he still had a ventilator tube in.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-KaPeYIZSOc4/TYOZy2qogdI/AAAAAAAAAIE/mQu821-DrY4/s1600/All+pics+from+phone+097.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://lh3.googleusercontent.com/-KaPeYIZSOc4/TYOZy2qogdI/AAAAAAAAAIE/mQu821-DrY4/s320/All+pics+from+phone+097.jpg" width="320" /></a></div><br />
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That was the first of many ways I saw him that just broke my heart. So tiny and helpless, covered in tubes and tape and leads. However, he proved to me that he was much stronger than I was giving him credit for, he was awake and hungry within an hour. My husband's parents were there, my Father got to see him, and his fiancée surprised me by visiting with her mother! It was wonderful to share the joy of my baby's birth.<br />
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So much of the first two weeks is a bit blurry thanks to pain medication, but there was a lot of sitting bedside, a lot of pumping breast milk, a lot of smiling and tears. We got to feed him, talk to him, sing to him, endlessly touch and count toes and fingers and stroke his soft baby skin. We also learned how to diaper a baby with a back incision right above his little baby butt. You flip it backwards, fold it down and fasten, and for added fun, we did it while he was on his tummy with a catheter in! I cried many times on the way out to the car because I had to leave him. I felt like I was just playing Mommy and visiting him, that he wasn't really mine and we'd never get to take him home. <br />
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On Thanksgiving, we got to hold him for the first time! That was a memory I'll never let dull... I relive it all the time. The sweet weight of his body against me, the sound of his soft breathing, the feeling of his fine hair against my cheek and the tears I cried into it. This little squishy baby, so fragile but so darn tough really was mine.<br />
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On December 1st, Squish had to have a shunt placed in his brain. The ventricles of his brain were collecting fluid and a shunt keeps them drained. It's a tube that goes into his brain and connects to a valve that is under the skin behind his right ear connected to another tube that runs under the skin down his neck, under his collar bone and into the cavity of his abdomen. This was harder than the back surgery. I knew that a shunt meant constant vigilance about making sure it was working, watching for signs that it isn't working and many of those signs are the same as a regular illness in a child. Plus, it's never easy to think of having your newborn's brain poked around in... so it did make for a very tense wait.<br />
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After three weeks in a motel, my husband had to go back to work and left me with his parents. We moved into an apartment and I began withdrawing. I would have polite conversation with my in laws and use pumping as an excuse to sit alone. Any time I was not at the hospital was time I was waiting to go back. I called the NICU several times a day, before I went and after I got back to that apartment. I was dropped off in the morning and picked up in the evening because my car went back with my husband. When it snowed, I had to wait for them to feel safe to drive. I lost my self reliance, I couldn't even go to the store without asking for a ride. I was also very lonely but didn't want company. I would sit at Kemper's bedside and cry, feeling sorry for him and myself and my husband. My in laws were very helpful, but I still felt quite alone. After a while, people began visiting, friends and family came and spent a few hours. Sometimes it felt like work to have visitors, like I was supposed to be entertaining, sometimes it was easy and just felt great to have someone I related with to talk to.<br />
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Two weeks went by and Kemper had to have a blood transfusion, his back opened up, they wanted to do a skin graft, but when he was in the OR, the surgeon decided more sutures would be sufficient. Kemper wiggled around so much he popped some of those sutures out! He had been on his tummy so long, and he was tired of it! Then the day came they told us he was going out on the pediatric floor. I was terrified. This meant less nurses, a door between the nurses and him and less careful monitoring. It also meant I could stay with him. At first, I was really scared because I didn't think I could do it. Everyone told me I needed to sleep, I couldn't stay at the hospital 24/7 and I bought into that. I spent the first night of his stay at the apartment, I never slept. When I arrived at the hospital, I found Kemper in his crib in a filthy diaper with poop all over his incision, and dried poop all over the blankets. After some very intense conversations with charge nurses, directors and patient visitor relations representatives, I vowed not to leave him again, and I didn't. He was never alone after that. I went to dinner with my friend Audri on New Year's Eve, and the nurse kept him with her the whole time.<br />
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During this time, I felt whole again. I was Kemper's Mom! I didn't have to ask to pick him up or feed him, I gave him medicine, bathed him, comforted him when he was upset, and learned how to be a Mother to a tiny baby. It was grueling, but it was heaven to be there with him. Toward the end of our stay, I succumbed to some Postpartum Depression. I was irritable and cranky with everyone but Kemper, I was really hard on myself about making the right decisions for him. I needed space, and when I got it, I felt better.<br />
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Then came the time we had all been waiting for... he was going to get to go home! I got three days notice, my husband came and stayed until the day Squish was released! He did a car seat tolerance test, passed beautifully, and was discharged! He still had to sleep side to side and because of that, he was on an apnea monitor at night. But we were going home!!! However... it was snowing. So we got a motel room and waited for the weather to clear. I didn't care, we weren't in the hospital! We were together as a family, just a regular old family and it was wonderful.<br />
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I rode in the back with Squish the whole way home and watched him sleep. I was amazed. He's sleeping and he's not in the hospital! He's feeling the sun on his face for the first time. I took picture after picture. When we arrived, I went in and one of my dogs didn't recognize me. I wonder if it was just because I was so tired that I wasn't behaving like myself. She quickly realized she knew me and all was right with her world again. We all got settled in and Brett and I piled up on the couch with Kemper and just sat there, smiling, watching him, playing with him. We had our son, we were home. All was right with my world again, too.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com4tag:blogger.com,1999:blog-431008621505335717.post-44270170050549353932011-01-31T22:31:00.000-05:002011-01-31T22:31:54.038-05:00And Baby Makes Three<div class="MsoNormal">It has been an intense couple of months!<span style="mso-spacerun: yes;"> </span>I fully intend on updating the blog and will do it in three parts.<span style="mso-spacerun: yes;"> </span>This blog entry will cover delivery, the next will cover the hospital, and the third will cover coming home and going back to the hospital!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">After that, I hope I'll have more regular updates and pictures!<span style="mso-spacerun: yes;"> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So our original date for Kemper's delivery was November 18th.<span style="mso-spacerun: yes;"> </span>We packed, we prepared, we got excited, and we took our dogs to the bather so they wouldn't be stinky when we got home. One of them was injured to the point of needing surgery.<span style="mso-spacerun: yes;"> </span>I cried, worried, made arrangements for boarding and surgery and we left.<span style="mso-spacerun: yes;"> </span>We got to our motel room and tried to settle in.<span style="mso-spacerun: yes;"> </span>The excitement and uncertainty kept us from sleeping.<span style="mso-spacerun: yes;"> </span>At least I want to say that's what it was, not the totally ghetto motel we picked sight unseen due to super cheap rates.<span style="mso-spacerun: yes;"> </span>We actually didn't want to pull the covers down to sleep in the horribly uncomfortable bed.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We got to the hospital and after hours of waiting around the amniocentesis results came back 3 points shy of what they needed to be.<span style="mso-spacerun: yes;"> </span>Bummer.<span style="mso-spacerun: yes;"> </span>We packed up and came home.<span style="mso-spacerun: yes;"> </span>Our families packed up and went home.<span style="mso-spacerun: yes;"> </span>Brett's brother had to fly back to <st1:state w:st="on"><st1:place w:st="on">Oklahoma</st1:place></st1:state>.<span style="mso-spacerun: yes;"> </span>I waited to hear from the coordinator about what our next step would be.<span style="mso-spacerun: yes;"> </span>She called the next morning and told us to be back at the hospital Monday morning, no amniocentesis, no waiting.<span style="mso-spacerun: yes;"> </span>He would be delivered that day.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So, we went back up Sunday night and got a room at a different motel, twice the price, twice the comfort, and no fear of being mugged.<span style="mso-spacerun: yes;"> </span>We did the same sleepless anticipation in a super comfy bed.<span style="mso-spacerun: yes;"> </span>The next morning we had grins so big our cheeks hurt in between periods of anxiety and when we left the motel, Brett promptly backed the car right into a delivery truck.<span style="mso-spacerun: yes;"> </span>To his credit, it's usually me that wrecks cars.<span style="mso-spacerun: yes;"> </span>After we picked up the pieces of my tail light, it was hospital and baby bound!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The hospital was a beehive of activity.<span style="mso-spacerun: yes;"> </span>There were a million people in and out introducing themselves, forms to be signed, needles stuck, blood work done, the first of many horrible hospital gowns worn, and finally at 2:17pm, we heard our baby cry.<span style="mso-spacerun: yes;"> </span>Talk about a defining moment!<span style="mso-spacerun: yes;"> </span>Brett and I both cried from joy and the power of hearing your child for the first time.<span style="mso-spacerun: yes;"> </span>It was what I would describe as the moment everything else in my life has been leading up to.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Because of the lesion, the nurses took him into the next room while the doctor started putting me back together.<span style="mso-spacerun: yes;"> </span>They did let Brett go in and see him, and he took a picture and brought it back for me to see.<span style="mso-spacerun: yes;"> </span>He already had sterile dressings put over his back and I never saw the actual opening.<span style="mso-spacerun: yes;"> </span>The picture was of a squishy, sqwooshy baby boy with tons of dark hair and little hands reaching up, face frozen in a cry.<span style="mso-spacerun: yes;"> </span>Brett told me he was kicking, moving his feet and toes and that he was perfect. </div><div class="MsoNormal"><br />
</div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/_0nB1S5wZ9G0/TUd-Ysi9EpI/AAAAAAAAADw/EF1xp_b5qpU/s1600/First+Picture+of+Kemper.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="http://3.bp.blogspot.com/_0nB1S5wZ9G0/TUd-Ysi9EpI/AAAAAAAAADw/EF1xp_b5qpU/s320/First+Picture+of+Kemper.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a few minutes old!</td></tr>
</tbody></table><div class="MsoNormal">I didn't get to see him until about 9 that night, I was beyond anxious.<span style="mso-spacerun: yes;"> </span>I pestered everyone about going to see him and was bargaining about what they wanted me to do first.<span style="mso-spacerun: yes;"> </span>When they said I could go, the wheelchair couldn't get there fast enough.<span style="mso-spacerun: yes;"> </span>Then Brett couldn't push it fast enough.<span style="mso-spacerun: yes;"> </span>My feet tapped on the foot rests with anticipation.<span style="mso-spacerun: yes;"> </span>The minute I had to scrub my hands and arms to enter the Intensive Care Nursery was torture.<span style="mso-spacerun: yes;"> </span>Never mind I was in a hospital gown and fuzzy pink bunny slippers, swollen and loopy, I would have gotten up and used my IV pole to vault myself to Kemper's bedside at that point!!<span style="mso-spacerun: yes;"> </span>Seeing Kemper was my singular thought.<span style="mso-spacerun: yes;"> </span>The memory of it is hazy because of the medication, but I did deem Kemper "My Squishy" that very night.<span style="mso-spacerun: yes;"> </span>He held fingers and made little noises and captured our hearts.<span style="mso-spacerun: yes;"> </span>He was lying on his side at that point, seemed content and was just super cute from the word go.<span style="mso-spacerun: yes;"> </span>I kept thinking, he doesn't look anything like that 4D ultrasound!<span style="mso-spacerun: yes;"> </span>We only stayed an hour since my eyes wouldn't stay open despite strenuous effort on my part. I didn't see him again until after the closure surgery, and that will be in Part 2.</div>Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com2tag:blogger.com,1999:blog-431008621505335717.post-12205140720873845802010-11-11T15:55:00.000-05:002010-11-11T15:55:35.105-05:00One Week to Baby!Time has flown by, just flown. I feel like I've been pregnant for about 20 minutes. Well, when I'm not thinking about all the lack of sleep and discomfort, you know. I'm so excited. My husband is so excited. We sit together and talk about what he'll look like, how we think he'll do through surgery, our worries, and how we can't wait to hold him. We're packing and tying up last minute details. We're trying to get everything straight with our families and friends that want to be there for us.<br />
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I can't believe I have to say goodbye to my belly already. He's safe and well cared for in there, except for the occasional fast food meal, and we're both pretty cool with him hanging out where he is. I wonder if I'll miss the random pokes to the ribs or those jabs to the bladder. Right now I know he's not too hot or too cold, he's not hungry, I'm sure of that one. But all the guessing and trial and error starts soon, and while I can't wait to hear his voice, I know I'll want to fix whatever is making him cry, and I'll have a list of things to tick off trying to figure it out. I am a novice, it will be confusing, but we'll figure it out.<br />
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We could not have been more blessed with support for this birth, my husband's parents, his brother, and my father will all be there for us. If any of them are fearful or discouraged by Kemper's Spina Bifida, you would never know it. That's what we need right now. People that can support us through this, then ask questions and share concerns. I have some really wonderful friends that will be there too, bringing food, running errands, and just being there for us. I feel so lucky to have so much love and support.<br />
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I wish though, that my Mom were alive to share this with, that she'd been able to be at mine and my sister's weddings, the births of my sister's children, to meet my wonderful husband whom she would just adore. For my family to have known her gentleness, to hear her colorful stories about growing up on a farm, to hear her laugh... would have been wonderful. I know she is watching over me and my husband, I know she won't miss a thing the day Kemper is born. When Brett proposed to me so long ago, he took me to the beach where my Mom's ashes are scattered. It was overcast and drizzling and I remember sitting in the sand just kind of talking to her. A few minutes later the clouds opened up right above us and the sun came shining down just around us. I felt like she was saying "Hi! I am so happy you're about to marry this boy and I love you!" It was a powerful moment for both me and my husband. We'll be taking Kemper to that beach as soon as we can.<br />
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My next blog will of course, be all about the new baby. Pictures included!! So thank you all for keeping up with me, for your positivity, and well wishes. I look forward to showing off my baby boy.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com7tag:blogger.com,1999:blog-431008621505335717.post-7587395394743645762010-10-23T15:26:00.000-04:002010-10-23T15:26:39.164-04:00My Fears Rear Their Ugly Heads<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Although my feelings about Kemper remain the same, peaceful, joyous, and that all will be right as rain, my own fears are gnawing a bit. I suppose part of that is some recent upheaval in what was a very serene setting... my online Spina Bifida Kids group.</span><br />
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</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I know that some people would choose to abort their baby when faced with a diagnosis like Spina Bifida. I can't say I agree with that, as it was never something we considered for my husband and I, but I am pro-choice and can't be a hypocrite. The thing about this is, a very confused and misguided woman continually asked us over and over about aborting. Everyone on that board chose to keep their baby, there are pictures and personal posts about their children and all the wonderful things they've accomplished. No matter what was said to this woman, she argued statistics on termination, on the burden or sacrifices of caring for a child who has Spina Bifida. It's a personal insult to the women who are proud of their kids to continually argue for termination. She has a decision to make, she doesn't need to justify it to anyone.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Being pregnant with a baby with Spina Bifida too, I tried to be compassionate. Everyone tried to quell her fears with personal stories of their childrens' successes and what wonderful kids they are. She countered that she'd received email from women who wished they'd terminated. She made a poll on the internet so complete strangers could vote for whether she should terminate or not. She lurks the board and jumps in occasionally, and she posts negative things on her blog about our group. I had to stop visiting her blog and chose not to keep up with her, just to pray for her.</span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Why am I even bringing this up? Well, it made me think about what my family faces... everyone feels entitled not only to their opinions, but to shove them down your throat it seems. I'm afraid of my child being stared at, talked to like he's a thing, or ignored. I'm afraid that we'll go to doctors who will not push for progress but resign my child to wherever he is because he has Spina Bifida. I'm afraid that my temper will get the better of me and I will not be a "good will ambassador" for awareness, but a frothing at the mouth she-devil when faced with a perceived slight on my child. I'm afraid that I will become hyper-sensitive, lose my sense of humor, and go the route of the uber politically correct. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Right now these are my biggest fears. I don't even know what's going to happen with Kemper because every child with Spina Bifida is different. We know he will walk, with or without braces, but that's all that we've been told for sure. I will never view caring for him as a sacrifice or burden. If you feel that way about your kid, it's not because of disabilities, it's because you feel that way about your kid. Whenever someone tells me how hard it's going to be, my blood boils. They don't know that. Will the NICU be hard? Heck yes! Will we get through it? Yes! And anything we have to do to take care of him will just be that, taking care of our baby! </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">With his delivery being so close, I'm worried about how I'm going to do! That's kind of nuts, isn't it? I know he's going to be fine, I have more faith in that than ever, but I suppose I need to find some faith in myself. That I can be calm, graceful and still get my point across. Wish me luck!</span>Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com9tag:blogger.com,1999:blog-431008621505335717.post-13656105406691748782010-09-30T14:48:00.000-04:002010-09-30T14:48:17.733-04:00Another Bump in the Road, but What a Ride!Here we are at 30 weeks! It's incredible how fast time has passed yet the journey still feels so long. We've found out a few things over the last few weeks and as usual, it's good and not so good.<br />
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Luckily, everything is great with Kemper. At ultrasound today they said the ventricles in his brain are holding steady, no hydrocephalus! All that means is excessive fluid on his brain that could necessitate him needing a shunt placed to drain the extra fluid when he's born. But... so far so good. It could change after his closure surgery, but we're hoping and praying it doesn't. He also weighs 3lbs and 15oz! He's getting bigger fast and I can certainly feel it!<br />
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Then there's the extra amniotic fluid around him. That's due to my very recent diagnosis with gestational diabetes. I bombed the glucose test pretty spectacularly. So, now in order to control the diabetes and prevent negative effects on Kemper and myself, I'm testing my blood glucose levels 4 times a day and following a diabetes diet closely. Not anyone's idea of fun, but as my husband says, "You can do anything for a set amount of time." He's right, and that amount of time is growing very short! We're only 7 weeks from the proposed delivery. <br />
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Sadly along with the gestational diabetes and how far along the pregnancy will be, I was advised not to make a long car trip coming up, and I'm saddened by that. I was headed to my Grandmother's 98th birthday celebration. I haven't seen her in a long time and there was a lot of my family attending also that has rare opportunity to see each other. We are already planning a trip early next year to visit her with the baby and while it won't be on her birthday, I'm really looking forward to seeing her.<br />
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So I guess we're in a count down and feeling more and more ready. His nursery is almost done, the baby shower is coming up, the bag isn't quite packed but we're thinking about it! All these things to prepare for our baby to come home. Despite everything, it's much like anyone else would be preparing for their child and that is the defining characteristic, not the Spina Bifida. Our joy is enormous and we want to share it.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com4tag:blogger.com,1999:blog-431008621505335717.post-63360906585137994482010-09-13T20:53:00.001-04:002010-09-14T12:06:35.638-04:00Nothing Like We Imagined (But Life Is Like That)So here we are. Brett and I are only about nine weeks from the proposed c-section. I find myself wondering why I haven't been writing about my pregnancy the whole time. I guess one reason is I'm not a writer. Another is that I've been afraid to jinx it. Another is my propensity to go off on tangents.<br />
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But anyway, here we are. This is probably going to be a long entry due to playing catch up and laying it all out. Let's just get started then.<br />
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Brett and I tried for a long time to conceive our baby, but that's a whole other story. When we found out we were expecting, we were elated, overjoyed, and a whole host of other happy adjectives.<br />
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We were nervous about it, more me than Brett, but we made it through the first trimester and relaxed into the pregnancy, the planning, the reading, and all the daydreaming about our life as a family and our child.<br />
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Because I'm 35, we got blood draws for a few weeks to make sure things were going ok. We never really gave them another thought though. At 17 weeks we went in to the big ultrasound wanting to find out the gender of our baby. The tech did some ultrasound and told us it was a boy as she printed out pictures for us. We were just over the moon happy. Then another tech came in and did more ultrasound, then another. Then the doctor came in to look at the ultrasound. Brett and I looked at each other and knew something wasn't quite right, but we kept it to ourselves. <br />
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We were taken to a consultation room, like usual, to wait for the doctor. We looked at our pictures and talked a little, and wondered what all that was about. Then the doctor joined us with the genetic counselor. Brett got up and got a box of tissues, my eyes were wide and I didn't know what to say, I couldn't think clearly, but it was plain that things were about to go sideways. When the doctor spoke, she started with, "I want you all to know that this is not your fault, and you didn't do anything to cause this." There were literally bells going off in my head, was my baby dying, what was happening to him, why was this happening, can I run out of the room and escape this... all this was in her pause for breath. She continued, "The baby has Spina Bifida." Brett and I immediately clung to each other and sobbed, I had skirted over the pages on this in my pregnancy books because it's linked to folic acid. I'd been taking that in a prenatal since 2007. We still knew it was a birth defect, and it was serious. We composed ourselves and the doctor started to talk again.<br />
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Things got blurry at that point, and I think we finished that box of tissue. There was a lot of information and words like shunt, surgery, lesion, brain malformations, scary... scary words, and they washed over me in cold waves of disbelief. We left there and I felt wooden, like I was carrying a wounded dove, like I wouldn't survive this. Brett and I retreated to our bed and kind of set up camp there. We called our parents, my sister and shared our news and tears. We read all the information they gave us, we called about insurance and basically did anything we could do in a powerless situation. <br />
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That was ten weeks ago, almost 11, and here we are getting ready to welcome our baby into the world. The love and support we've gotten from the family and friends who know about this has been overwhelming and we feel so very blessed. I've met several people with happy, thriving children in an online SB group that has been a wealth of support and information. We've gotten a lot of answers since then, but there are still a lot of questions. We know that if our baby boy, whose name is Kemper, has good lung functioning at 37 weeks, he'll be delivered by c-section at Duke Hospital. If not, we wait a week. We know that the defect on his spine is upper sacral and very small which is just about the best thing we could have hoped for. We know he will have surgery the day after he's born to close the opening on his spine and he'll be in the NICU for a while. We also know about finding faith, having hope, loving this baby more than we knew possible, and finding peace with his diagnosis. The rest we can work out later. <br />
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We do not want Kemper to be defined by a diagnosis. We want congratulations on our son, not condolences on his condition. This blog is here for information, for an outlet, so that we can share our experience with you and maybe we all learn something. I know Spina Bifida is the most common serious birth defect, but I never knew anyone that had it, so maybe this will be a source for people who need it. Who knows about any of that. The important thing is, Brett and I are having a baby, we're starting a family, and we couldn't be more excited.Anonymoushttp://www.blogger.com/profile/04174677494622531698noreply@blogger.com9