tag:blogger.com,1999:blog-142869162024-02-18T20:04:20.206-07:00Adventures in Raising a Disabled ChildRaising a daughter with 1p36 Deletion Syndrome.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.comBlogger381125tag:blogger.com,1999:blog-14286916.post-74647070216214830522019-08-04T16:12:00.000-06:002019-08-04T19:17:12.193-06:00Epilogue<div class="separator" style="clear: both; text-align: center;">
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I started this blog in <a href="http://raisingadisabledchild.blogspot.com/2005/07/in-beginning.html" target="_blank">July of 2005</a>, when blogs were popular and my special daughter, Whitney, was young and going through so much. My wife and I felt so alone as we cared for her many needs and struggled to understand what the future would bring us. I often wrote posts as a form of therapy for myself to aid in processing what I was going through. But I discovered that along, the way, others whose children were diagnosed with a 1p36 Deletion or even other medical issues, also found help in what I had shared.<br />
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Five years ago, blogs were on their way out, as social media began to take over as the dominant way of sharing online. At that same time, I found that life with Whitney was becoming more of a normal, everyday routine. In fact, I found that I really couldn’t remember life being any other way. So I stopped posting. But I left everything online as a resource for anyone who might need it.<br />
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This past weekend we attended the <a href="http://www.1p36dsa.org/conferences/" target="_blank">annual conference</a> for families affected by 1p36 Deletion Syndrome. It was a wonderful experience. We spent time with families who completely understood our journey. Many were old friends we’ve now known for years. Others were brand new. We loved talking with them and sharing how wonderful it has been to discover the many things that Whitney can do. Things the doctors told us that Whit would never do. Several new families surprised me by saying this blog is still one of the first search results for 1p36 Deletion Syndrome. And they wondered how Whitney is doing now. So maybe it’s time for a short update.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5hLh4wPfgf33FNcrWhuqbIbudlGHdanVrM5IqbfDbhA6LMMF1g4jTQQARcD4bA5oU4PVdlb7bZLqwAgnKLN-RT9LXD4vaZIRVbH5o9IwF1zzu-GXmIUOyugJ-6BizgujjtSNv/s1600/IMG_4012.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1203" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5hLh4wPfgf33FNcrWhuqbIbudlGHdanVrM5IqbfDbhA6LMMF1g4jTQQARcD4bA5oU4PVdlb7bZLqwAgnKLN-RT9LXD4vaZIRVbH5o9IwF1zzu-GXmIUOyugJ-6BizgujjtSNv/s320/IMG_4012.jpg" width="320" /></a>The little girl I used to write about has now become a young woman. She is 15 years old and will start high school this fall. Whitney has been blessed with very good health considering the genetic info she’s missing. She doesn’t have any more seizures. Her strength and muscle tone aren’t too bad. She walks and runs and even dances. Just maybe not in quite the same way I’d envisioned before her diagnosis. She still has some moderate hearing loss but that doesn’t stop her from loving music. She goes to choir at school with the typical kids and loves singing along in her own way. She doesn’t quite form the words and she doesn’t quite carry the tune, but it’s still great singing to us.<br />
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For so many years, feeding, growth and weight gain were a battle we fought. These days, Whit is a picky eater, but she does eat well when she chooses to. And she’ll even raid the fridge and pantry to eat something when she feels like it. Just like a typical teen. Just yesterday we caught her at the kitchen table with a salad she’d put together herself with lettuce and ranch dressing she got from the fridge. And she consumes more potato chips than anyone else in the house! Whit’s growth curve is well below what a typical child’s would be, but she’s healthy and didn’t ever need a G-tube or other feeding device.<br />
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Whitney loves to participate in activities with other teens her age at the church we attend. She knows the girls and interacts with them in her own Whitney way. She has a small toy horse and a small toy tiger that she often takes to activities and invites the girls to pet. It’s kind of a Whitney greeting and the kids are all good about petting the horse or the tiger.<br />
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Whit also loves camping and being in the outdoors. She signs for camping and we try to get out a couple times a year. She also loves going for walks. Her strength and ability to walk has improved significantly since a surgery to straighten her left leg last spring. When we see a dog out for a walk, Whitney is hard to keep up with as she runs to pet it.<br />
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We are working to find ways to make her life as fulfilling as possible. We’re not great at it yet, but we try to let Whitney make as many choices as possible. This might be with regard to what she wears or eats. Other times it has to do with activities she participates in. She ended up in choir because she asked to be there when it was time for school registration. We discovered that Whitney loves carousels, ferris wheels and roller coasters. She asked to go on a bunch of them as we vacationed in California earlier this summer. She likes to pick which animal she’s going to ride. And sometimes she picks a roller coaster so wild we have to help hold her head up on the turns. But she loves that tickle in her stomach the rides give her and she always laughs afterward.<br />
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I love seeing the person she is becoming. We celebrate the victories she wins more than with our other children because they hard-fought. But there have been a lot of them! And for that I’m grateful.<br />
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I’m also grateful to be a part of a group of peers who understand the road that my family is walking. The non-profit organization <a href="http://www.1p36dsa.org/" target="_blank">1p36 Deletion Support & Awareness</a> has done so much to connect us with other families and great information. I can’t say thank you enough to those who serve in that organization and those who participate in the connected <a href="https://www.facebook.com/groups/1p36dsa/" target="_blank">Facebook group</a>. If your child has some other struggle, I encourage you to find a similar place to share with others. It helps so much to interact with people who understand.<br />
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And so, my friends, if you’ve discovered this old blog because your child has recently been diagnosed with something that seems like it might just bring your world crashing down, please don’t forget, that there will be good times too. So many good times. Raising a special needs child is a roller coaster ride of its own. With higher highs and lower lows than almost any other ride you could experience in life. And I wouldn’t trade that ride for anything! Keep putting one foot in front of the other and before you realize it, you’ll be able to look back and celebrate all of the wonderful things you and your special child have accomplished together.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com2tag:blogger.com,1999:blog-14286916.post-355692670902459272014-04-25T12:16:00.003-06:002014-04-25T12:16:37.198-06:00Raising Awereness about Another Important Cause<div abp="133" class="separator" style="clear: both; text-align: center;">
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I've been away a bit just enjoying springtime with the family, but I got an interesting email from a reader a couple of weeks back. Her name is Heather Von St. James and she's a cancer survivor. Her story is one I wanted to share, especially because the cause of her cancer is 100% preventable. You see, Heather was diagnosed with mesothelioma; a rare and deadly cancer caused by exposure to asbestos. She's made it part of her life's mission to spread the word about the dangers of asbestos and the fact that it can be found in all kinds of products and locations around the US. Thirty million pounds of it are still being used each year in new products the US. I had no idea that was the case. Did you? It's the number one cause of occupational cancer in the US and we can help stop it.</div>
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Please take a moment and read more about Heather's journey and how we can all help by visiting <a abp="12" href="http://www.mesothelioma.com/heather/awareness/" style="color: #3376a4; text-decoration: none;">http://www.mesothelioma.com/heather/awareness/</a> And thanks for taking the time!</div>
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Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com1tag:blogger.com,1999:blog-14286916.post-63811678854769035922014-03-24T12:34:00.000-06:002014-03-24T12:37:59.130-06:00Knee Improvements<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0WIV_39KAh0NhgTd2FjrPSl15SntJsW83kJy_PGbEFLKikyDEfit3qPduzBu9gCQxoDUvia1XYZPt5uDbwbrUz0ybFnRPjueGaqHkL4IVDAJ_M20feLHNcw3QnbUfxx82_nwp/s1600/XRay.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0WIV_39KAh0NhgTd2FjrPSl15SntJsW83kJy_PGbEFLKikyDEfit3qPduzBu9gCQxoDUvia1XYZPt5uDbwbrUz0ybFnRPjueGaqHkL4IVDAJ_M20feLHNcw3QnbUfxx82_nwp/s1600/XRay.jpg" height="257" width="320" /></a>Whitney went over two months without walking starting in January. We saw a doctor at an instacare who insisted her leg was broken and put her in a cast. But after the cast came off Whit still couldn't walk. Her knee was inflamed and swollen and she wouldn't put any weight on it. Next it was the orthopedic surgeon's turn. He looked at Whit's X-rays and said there was no sign of a break in the original films and no sign of any healing in the new X-rays he ordered. He suggested we get an MRI and look at the soft tissues in her knee. When those came back, the various ligaments and tendons also looked fine. That was a relief but we still didn't have an explanation for the pain and swelling in Whit's knee.<br />
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Next we headed to see a rheumatologist. After examining Whitney, he diagnosed her with <a href="http://www.mayoclinic.org/diseases-conditions/water-on-the-knee/basics/definition/con-20026072" target="_blank">knee effusion</a>. He ordered some blood tests to determine the cause. He was leaning toward arthritis but wanted more information. So after the blood tests came back, we've been able to rule out <a href="http://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/basics/definition/con-20014868" target="_blank">rheumatoid arthritis</a>. We're glad Whit's immune system isn't attacking her joints. But she does seem to have a juvenile form of arthritis affecting her knee. The rheumatologist has prescribed some heavy duty anti-inflammatory medicine and scheduled some follow-ups with us.<br />
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The good news is that Whit has responded pretty well to the medications along with some steaming hot baths with epsom salt. The swelling has gone down a bunch. She's been able to walk pretty confidently for the last week although she limps badly and she's pretty tired by the end of the day. In spite of that Whitney's happy to be able to get around again and she's even gone to school without the wheelchair for several days.<br />
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If things continue to be difficult for her, we can consider steroid shots for her knee. But we'll take things slowly. We'll see what the anti-inflammatory medicines can do for her first. We'll also probably try a knee brace to give her knee some extra support. <br />
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It's good to be on the road to recovery again. Thanks to everyone who's been so concerned about Whitney during this whole episode. We really appreciate it and we're thrilled that Whit is back on her feet. Hopefully, there will be more progress to come.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com1tag:blogger.com,1999:blog-14286916.post-14509923391180866842014-03-18T12:37:00.001-06:002014-03-18T12:37:15.508-06:00Willing Protector<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXzodzTPTx5JaJjVglVeH5rf8jh5MJYMuc_PfVUoVpgRTzN-5FezMXNCbfQmjU9Gbw5YVce8yrbbU5_tQirsge6iErkps8O5V9b21ZhGTVaLoIugyzHil8xOWBu3ZGLYdazkqB/s1600/IMG_2265.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXzodzTPTx5JaJjVglVeH5rf8jh5MJYMuc_PfVUoVpgRTzN-5FezMXNCbfQmjU9Gbw5YVce8yrbbU5_tQirsge6iErkps8O5V9b21ZhGTVaLoIugyzHil8xOWBu3ZGLYdazkqB/s1600/IMG_2265.JPG" height="320" width="240" /></a>Three years after Whitney was born with all of her complications and challenges, Melanie and I welcomed a son to our family. We named him Liam in the hope that someday he can help be a protector for his older sister. Liam is a short form of William or Wilhelm, which means willing protector in German.<br />
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Liam is just turning seven but we're already seeing inklings of his ability to look after Whitney. The other night as I was tucking Whit in for bed, Liam came in and asked her if she would like him to read her a story. She nodded and Liam picked up Fox in Socks, one of Whitney's favorite books. Liam proceeded to sit down on the night stand next to Whitney's bed, reading and showing her the pictures. I stood quietly in the doorway to Whit's room and listened.<br />
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Moments like this are still pretty rare in our home, but Liam seems to innately comprehend that Whit needs a little extra help with things. He doesn't usually get too impatient and he's starting to understand that, even though he's the little brother, he can provide some of the help Whit needs. It's early yet, but I have high hopes that he'll be there for Whitney sometime down the road when she really needs him.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com2tag:blogger.com,1999:blog-14286916.post-11078944005973878402014-03-03T12:59:00.002-07:002014-03-03T12:59:20.044-07:00Weak in the Knees<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQc631KU63TKZGlmEwZ1-jwUIR21YeHuSVgecPeAXmgw0VWr9y1Y9l0S9C_B8wlGVuHXGALc5is1uACgPY8JibIeX550zM5cdChvHQGe92VfirrZ-TJmn7_I58B4N9Jaetctu_/s1600/Photo+Feb+17,+8+02+15+PM.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQc631KU63TKZGlmEwZ1-jwUIR21YeHuSVgecPeAXmgw0VWr9y1Y9l0S9C_B8wlGVuHXGALc5is1uACgPY8JibIeX550zM5cdChvHQGe92VfirrZ-TJmn7_I58B4N9Jaetctu_/s1600/Photo+Feb+17,+8+02+15+PM.jpg" height="240" width="320" /></a>Some of you may have noticed the date for Whitney to get her cast off came and went without an update from me. That's because things haven't been going all that well. After four weeks x-rays were taken of Whitney's knee and the cast was removed. We hoped that would be all Whit needed to get back on her feet. But Whitney's knee became extremely swollen and continues to cause her all kinds of pain. She refuses to put any weight on her leg and she can't straighten that knee. She has some motion in it and her ankle recovered from post-cast stiffness quite quickly. <br />
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So what is going on with her knee? It was off to the orthopedic surgeon to find out. He took a look at Whit's x-rays from before and after the cast and said there was no sign of a break in her tibia in either one. So someone blew it and wasted a month of time that could have been used to help Whit recover. The surgeon's opinion is that there is something wrong in the soft tissue of her knee that is causing the pain, swelling and reduced motion. He sent us off to get an MRI of the joint so he could understand better what is happening.<br />
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So one more sedation and an MRI of her knee later, the surgeon's assistant has told us Whitney has a joint fusion involving the tissues in her knee. This is better than having a problem where bone is grinding on bone. But we've still got to figure out how to get rid of Whit's pain and get her on her feet again. Her orthopedic surgeon is out of the office this week, but hopefully, next week he'll return with a plan. We've been told it will likely involve a sedated session of manipulating her knee to get things to move back into place and start working again. But we won't know for sure until next week at the earliest.<br />
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Melanie and I have been carrying Whitney around the house for six weeks now and using a borrowed wheelchair when Whit needs to go anywhere else. Our backs are both shot. Not to mention Whit's continued pain and frustration. So we're praying for a correct diagnosis and some effective treatment that will get her back on her feet soon.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com0tag:blogger.com,1999:blog-14286916.post-12624777665954690652014-02-17T12:56:00.001-07:002014-02-17T12:56:49.702-07:00Taking Responsibility<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6w-Gp2-dCi4Dyp0wjadeHpE4oT7cz3QExSMjsf9kRquZqH8Z6Ac_fPfj1C0g7YctDuYKS4Bq2QrlQ9tz34udtR0uzqsrgVcIcMfmD1tOaX9zgvFY3cj8OBsI_t4Q1Eeau5sVa/s1600/DadsAndDonuts.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6w-Gp2-dCi4Dyp0wjadeHpE4oT7cz3QExSMjsf9kRquZqH8Z6Ac_fPfj1C0g7YctDuYKS4Bq2QrlQ9tz34udtR0uzqsrgVcIcMfmD1tOaX9zgvFY3cj8OBsI_t4Q1Eeau5sVa/s1600/DadsAndDonuts.jpg" height="240" width="320" /></a>During the daily rush of helping Whitney get dressed, off to school on time and countless other things, it's easy to set aside teaching important lessons. Melanie is better than I am about taking advantage of teaching moments. So when I see something new it often comes as a surprise. Even when it's been something Melanie has been working on for some time.<br />
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For example, Whitney got into some things in our basement and made a big mess that Melanie and I had to clean up. Whit knew she had done something wrong even before cleanup was done and punishment time began. She came over and got our attention and signed, "I'm sorry."<br />
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Now that's a small thing, I realize. But I was so surprise and pleased. It represents the fact that Whitney, on her own, realized she had caused a problem that Melanie and I were having to handle. She realized that she was responsible and chose to apologize all by herself. She's beginning to take responsibility for her actions and apologize when she does something wrong. And she's picking it up pretty early in life, too. I think we all encounter adults who still haven't mastered this.<br />
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I'm grateful to have a daughter who is responsible, self-aware and has such a good heart. Maybe one day she'll learn not to make the kind of messes she sometimes does. But in the mean time a sincere "sorry" sure makes a big difference.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com3tag:blogger.com,1999:blog-14286916.post-24483178652283582912014-01-23T12:27:00.000-07:002014-01-23T12:27:46.807-07:00A Cast Is A Lousy Birthday Present<div class="separator" style="clear: both; text-align: center;">
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We celebrated Whitney's 10th birthday list past week. Many family members came by to celebrate and spend time with her. She got some really fun gifts. (We decided against the iPad, by the way. It seemed like a bit much for a 10 year old.)<br />
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But Whitney wasn't feeling too well during all this celebrating. On Saturday, Whitney kept telling us that her knee hurt and refused to put any weight on her left leg. Melanie took her to the weekend instacare near our house where they took x-rays in case something was broken, but everything looked okay.<br />
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We decided to let her rest her leg and see if it got any better. But by a couple of days later it was obvious Whitney wasn't improving. She wouldn't stand on it. She kept telling us it hurt and so it was time to go back to the doctor's. Thankfully, during the week we're much more able to get into our regular pediatrician's office. They took some new x-rays and spotted a break.<br />
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Sometime, most likely Saturday morning, Whitney stress fractured the top of of her left tibia. The instacare doctor over the weekend missed it but the pediatrician said this was the kind of break that doesn't happen as much in adults. He sees a lot of children with this kind of break. It usually happens in the summer, when kids are jumping on trampolines.<br />
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So it was time for Whitney to get a big pink cast. It goes from her toes all the way up to her hip in order to completely immobilize her knee and allow it to heal. Whit will have to wear it for four weeks and then they'll take new x-rays to see how things are healing. Luckily, Whit will be off track from school for most of that time. She's just been resting around the house and keeping weight off her leg. Once the cast was on, her pain went away. So now the major issue is just boredom.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_boVvD95L4Bd13EOrFC67s4fyjfb46on_SB-jNonJk5OnRmdr_2Q_8Tlsdp0Xi-yUn7SmcYQMmloe2XyW35pYg0UjDPTkP7FNAZkPFvefz2MaGR9Oje1zHTIbIjO6wJCL69iO/s1600/FirstCast.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_boVvD95L4Bd13EOrFC67s4fyjfb46on_SB-jNonJk5OnRmdr_2Q_8Tlsdp0Xi-yUn7SmcYQMmloe2XyW35pYg0UjDPTkP7FNAZkPFvefz2MaGR9Oje1zHTIbIjO6wJCL69iO/s1600/FirstCast.jpg" height="320" width="240" /></a>This is actually Whitney's second pink cast. Once when she was about 18 months old she fell from a standing position and caught herself with her arm which <a href="http://raisingadisabledchild.blogspot.com/2005/08/unlucky-break.html" target="_blank">broke both of the bones in her lower arm</a>.<br />
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I'm wondering if her bone density is an issue. So we'll have to do a good job of protecting her from falls and bumps. The only thing we can think of that may have caused her leg injury is jumping. She does that sometimes when she's excited and she was excited to play with Melanie's iPad Saturday morning.<br />
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Thanks to everyone who's sent her well wishes. Whitney is healing well, but next year we'll have to remember that a cast really is a lousy birthday present. Maybe next time she'll finally get that iPad she really wanted.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com4tag:blogger.com,1999:blog-14286916.post-14271283147393575962014-01-15T12:41:00.000-07:002014-01-15T12:41:21.171-07:00Stressed About Birthday Shopping<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ltjiKuOSkwtDuRUdkGynrOVFIKOxhoyX6QG-ENIBY0jxjTCCGNI3LWpQezrnjwZhsBZNubMY9pVVLNIyZAh7RGR6EfJnotHn_AZnpRaEjcqGgwVnTBkLkIO-1y_A654vcyfC/s1600/Gift.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ltjiKuOSkwtDuRUdkGynrOVFIKOxhoyX6QG-ENIBY0jxjTCCGNI3LWpQezrnjwZhsBZNubMY9pVVLNIyZAh7RGR6EfJnotHn_AZnpRaEjcqGgwVnTBkLkIO-1y_A654vcyfC/s1600/Gift.jpg" /></a>Christmas celebrations have come and gone. We had a great time together as a family. Whitney's tenth birthday is now fast approaching. It's such a big milestone and I'm feeling a bit of panic over what gift to get her. I've been trying to be in less of a rush and notice the things that Whitney enjoys in life. The things that make her smile are so simple. She loves tickle fights. She loves music. Especially when I sing to her. (Which is hilarious if you've ever heard me sing. Did I mention she has moderate hearing loss?) She loves to listen to music on the big, old iPad the kids share. And she also loves to watch shows that have her favorite songs in them. She'll skip straight to the place with the song she likes and then play it over and over. She's always asking for that iPad to pass the time. It's been that way ever since her old, hand-me-down iPhone died a few months back.<br />
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Whitney doesn't really care for typical age appropriate play. She really doesn't care about her clothes or hair. Although she does like books. So maybe there's an idea there. <br />
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If I could ask her, she'd probably say she'd like to have a Mini iPad all her own. That would give her the music and shows she likes and she could even load some books and her speech software. And she wouldn't have to share it with anyone else, which might prevent some fighting. But that's a pretty big gift for a ten year old. And I don't know that I want to encourage something that would allow her to withdraw more often from family interactions. I guess I'm just stumped because I can't think of anything else.<br />
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I'll have to think about this decision a bit more. But time is running out. Someone please tell me that gift giving for her will get easier someday!Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com0tag:blogger.com,1999:blog-14286916.post-85130676741721525512013-12-16T11:00:00.000-07:002013-12-16T13:21:07.903-07:00School Plans and the Soft Bigotry of Low Expectations<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg50sM0MijQDfZjzNrW4qadXruKXhGLqiKsbNfE6DpFs2NavAPiOzIdaUrQeEaEfv2Gnu_qgdADw0V9V3yM9nXl5K-4MBg31G8rgzpKKKVy9lpvL0KlKPYlVqDJLd_EHVabak6s/s1600/Whitney2013.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg50sM0MijQDfZjzNrW4qadXruKXhGLqiKsbNfE6DpFs2NavAPiOzIdaUrQeEaEfv2Gnu_qgdADw0V9V3yM9nXl5K-4MBg31G8rgzpKKKVy9lpvL0KlKPYlVqDJLd_EHVabak6s/s1600/Whitney2013.jpg" /></a>I read a blog post recently that got me thinking about Whitney's upcoming school choices. The post was about a special needs mom that never gave up on her son despite his paralysis and how he became a successful writer in the end. You can give it a read <a href="http://middleagedmormonman.com/home/2013/12/a-mothers-hope.html" target="_blank">here</a>, if you'd like. I was really inspired. In the post I read a phrase that got me thinking: "the soft bigotry of low expectations."<br />
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Is lowering expectations a form of bigotry? How often do I tell myself, "Well, Whitney will never be capable of that. So I'll just lower what I expect of her." I hope I don't think that way very much. Maybe we do sometimes. Melanie and I know that kind of thing used to happen at Whitney's school. Some of her previous teachers were very kind and loving but wouldn't even expect her to sit at her desk during class or participate in classroom activities. She has disabilities. No big deal. Let her do what she wants. Right? Whitney got away with a lot because she has some special needs and she's cute and smiley.<br />
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Thankfully, we've been blessed the last three years where Whitney has been in a classroom environment where she was expected to sit and listen and do her work to the best of her abilities. We've been so thrilled with the difference it's made. Melanie and I are constantly thanking the educators involved because it's hard work to have high expectations for children in a special ed cluster class.<br />
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But Whitney's graduating from her little class where she's done so well in recent years. And Melanie and I worried about the soft bigotry of low expectations becoming a problem once again. We're actually considering sending Whitney to another school where we know the expectations will be kept high. We feel bad about taking her away from the classmates that she's learned to love at her current school. But based on what we've been told, the classroom situation in the next age group at the same school just isn't as rigorous as we'd like. We're not demanding tiger parents. That's not our style at all, but we do want her to continue her current pace of growth. So we're gearing up to go to bat with the district over a change in schools. Melanie and I are hoping they'll understand our reasoning and be supportive. We've got the backing of Whit's current, wonderful teacher. So that should help a lot.<br />
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We're doing our best to keep expectations high when it comes to Whitney and we're looking for more great educators who will do the same. And we're grateful to everyone who has helped keep our hopes high at school over the years.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com1tag:blogger.com,1999:blog-14286916.post-50743918084431487742013-12-13T12:05:00.000-07:002013-12-13T12:05:01.427-07:00IEP Review and Great Progress Communicating<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCuN87D3f0pwhaDBdKeN44IIhvEOr69jvwTW7VT20p6IIShhGULpovK6FD2ZrzPA92I5kx4gojyAK6JhmJ2K-DwGOH9wqUGcyXAgaz1kYOBRaCc9A_npnYI9oe3q-cnZrtnC6l/s1600/11257850635_e916e8e124_b.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCuN87D3f0pwhaDBdKeN44IIhvEOr69jvwTW7VT20p6IIShhGULpovK6FD2ZrzPA92I5kx4gojyAK6JhmJ2K-DwGOH9wqUGcyXAgaz1kYOBRaCc9A_npnYI9oe3q-cnZrtnC6l/s1600/11257850635_e916e8e124_b.jpg" height="228" width="320" /></a>We just finished reviewing Whitney's Individual Education Plan (IEP) for another year with the folks at her elementary school. This happens annually and we use the time to review our goals for Whit as well as her accomplishments. Whit has had another good year at school. She's making progress on her goal of recognizing 175 sight words when she reads. Potty training is also coming along, although many days are still a struggle. But biggest area of improvement for Whit over the course of this last year has been with speech and communication.<br />
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A year ago, Whitney's ASL interpreter was reassigned to help a child who was more profoundly affected than Whit. Melanie and I had mixed feelings at the time. Whitney had used sign language heavily to understand and communicate in the classroom. But in the year since, Whit has listened more attentively in class. She's started to vocalize more when asked a question as well as started to use her communication software more effectively. Whitney's teachers feel that this is due to Whitney having to perform all these tasks on her own now instead of being able to depend on her interpreter to do it for her.<br />
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It's exciting to see her understand and communicate more about what is going on around her. We're grateful to for the team in Whitney's classroom that works so hard for her. She's made great strides over the course of her time with her current teachers. They've expected a lot of her and Whitney hasn't gotten away with being lazy just because she has some physical disadvantages. That's spurred her on to some great accomplishments over the last three years that she's been in her current classroom. Next up, we're making plans for where Whitney will go to class in the fall and how it will affect her. More on that soon.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com4tag:blogger.com,1999:blog-14286916.post-65659085851044211262013-11-15T12:34:00.000-07:002013-11-15T12:34:02.907-07:00Fighting Awkwardness One Nose Tweak at a Time<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCquUu35a0Nl-OD8A6hxRanDNYljgXCfDr9Cl3W7ZiKBY9HEZxkCzY-a0ngRwxCtQDS12ZYKPJkhv3ZRGjDuC2Kzui7P635trGyLQ0a7CdQbTCl4MNJ5KO_-cmDXwNazZdA6QI/s1600/WhitPumpkinPatch.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCquUu35a0Nl-OD8A6hxRanDNYljgXCfDr9Cl3W7ZiKBY9HEZxkCzY-a0ngRwxCtQDS12ZYKPJkhv3ZRGjDuC2Kzui7P635trGyLQ0a7CdQbTCl4MNJ5KO_-cmDXwNazZdA6QI/s320/WhitPumpkinPatch.jpg" width="320" /></a>One of our good friends who has a little boy with <a href="http://www.1p36dsa.org/">1p36 Deletion Syndrome</a> recently wrote a <a href="http://carterthorup1p36.blogspot.com/2013/11/people-reacting-to-special-needs.html">great post</a> about the sometimes awkward reactions people have to children with special needs. Please go give it a read if you'd like to get a great account of how frustrating it can be one someone ignores or avoids one of these special children.<br />
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That post was some great food for thought for me recently. Whitney is a very social child. She loves interacting with people and I wondered if she's ever noticed that people avoid or ignore her. After thinking about this for a while I realized that Whitney simply will not let people ignore her.<br />
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You see, when Whitney was really little her grandparents would come over to visit and they decided that encouraging Whit to reach out and honk their noses would be a fun game. And it was. Whitney loved it. Which was all fine and good when Whitney was a couple of years old. But Whitney will be ten in January and she has adopted the nose honk/tweak as her official greeting! And she's an equal opportunity tweaker. She'll grab the noses of church leaders on Sunday, the principal at her school and various of the doctors and nurses she sees.<br />
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We're still trying to teach Whitney about personal space and that there's a time and a place for tweaking someone's nose. But be warned, if you are trying to ignore my little girl or avoid her. Because she'll probably march right up to you, grab your nose and begin to laugh her head off. There's just no avoiding a hilarious little girl like Whit. My advice, don't even try.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com2tag:blogger.com,1999:blog-14286916.post-6956196186236690132013-11-06T12:43:00.001-07:002013-11-06T12:43:21.818-07:00Halloween and Making Her Own Decisions<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvIHh1cD2Wv1TXqZSfeV_JR1h9r4adEwM9G3ZTmSO2hTlC89irH1rceBagjvS3IvhYQWbe0nRVNWazcvrFdr869qRK5jcNOuINwPyx4508cDi1NCAYFNujkfXNqDxozu6bV9vT/s1600/Halloween.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvIHh1cD2Wv1TXqZSfeV_JR1h9r4adEwM9G3ZTmSO2hTlC89irH1rceBagjvS3IvhYQWbe0nRVNWazcvrFdr869qRK5jcNOuINwPyx4508cDi1NCAYFNujkfXNqDxozu6bV9vT/s320/Halloween.jpg" width="320" /></a>Getting ready for Halloween this year was a lot of fun for Whitney. Melanie and I are trying to let Whitney make more decisions for herself about things these days. So we let Whit wander the local costume shop when it came time to pick a costume. She finally settled on an outfit she thought looked cute. Melanie and I didn't even recognize it but she chose a <a href="http://disney.wikia.com/wiki/Sugar_Rush_Racers">Sugar Rush Racer</a> costume from Wreck It Ralph. And she was very happy because of how pink it was. The other finalist from the costume shop was a My Little Pony costume. Also, very pink. That seems to be a consistency in her taste lately.<br />
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When Halloween came, Whitney also knew enough to be very excited about trick or treating. She carried her own candy bucket (until it got too loaded down with candy) and even vocalized her own "trick or treat" and "thank you" at each of the neighbor's houses.<br />
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These are just little things but it's so fun to see the progress in her life.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com0tag:blogger.com,1999:blog-14286916.post-21981130269745350542013-10-10T12:27:00.001-06:002013-10-10T12:27:25.351-06:00Parenting and Worrying<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi15EPFauboQ_Re_2TmJlhCdkBbb1yawuqXWwqtOOD7njyyhNnr9ZvpXWVlI0pNj_XTd5FoR8tgpK1RqoTxgizSyMpERfmqqjJTYCpN-SSoBUJscs5L4EWBKLuN_MwAw47j_qI3/s1600/LiamChair.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi15EPFauboQ_Re_2TmJlhCdkBbb1yawuqXWwqtOOD7njyyhNnr9ZvpXWVlI0pNj_XTd5FoR8tgpK1RqoTxgizSyMpERfmqqjJTYCpN-SSoBUJscs5L4EWBKLuN_MwAw47j_qI3/s320/LiamChair.jpg" width="320" /></a></div>
I haven't posted anything in almost a month. I don't think that's ever happened before. Melanie and I have turned a bunch of our parenting energies from Whit to her little brother Liam lately. Whitney is doing very well, and so is Liam for that matter. We just have some things we're working through with regard to his behavior at school and his ability to concentrate on his classwork.<br />
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But everything going on in my children's lives got me to thinking about parenting in general. Do we as parents ever really stop worrying? I had the typical first time parent worries before Whitney was even born. Then, when she arrived, Melanie and I worried that she wasn't going to make it. Then we worried about getting her out of the hospital. Then we worried about her <a href="http://raisingadisabledchild.blogspot.com/2005/07/search-and-seizures.html">seizures</a>. And when she got her <a href="http://raisingadisabledchild.blogspot.com/2005/07/brief-primer-on-1p36-deletion-syndrome.html">1p36 Deletion Syndrome</a> diagnosis we really learned what it meant to worry.<br />
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As time has progressed and Whitney has thrived, my worries have turned to her younger brother and making sure he's reaching his potential too. There was a point when I thought, "Having a typical child won't be nearly as worrisome as what I've gone through with Whitney."<br />
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The actual truth is that each of my children fills my heart with anxiety for their wellbeing and success. Sometimes when I talk to Melanie on the phone on my lunch break, that's all we discuss. So I guess, as I think this over, I've realized that life as a father will never, ever be worry free. And that's okay. I just need to learn to cope with concern and enjoy the moments.<br />
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Despite the challenges in my children's lives, I got to spend the evening relaxing with them yesterday. We had dinner and finished up a bit of homework. We had time to read some stories and Liam sang me a Halloween song he's learning in school. We wrestled and tickled each other for a while before bed. It was so nice! Just doing normal fun stuff with my children helped force the longer term concerns into the background. At least for a little while.<br />
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I guess parenting, special needs or not, will always be a challenge. But stopping for a moment to enjoy my children seems to be a great way to keep the worries at bay.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com1tag:blogger.com,1999:blog-14286916.post-77268150414336666492013-09-17T15:14:00.000-06:002013-09-17T15:14:18.080-06:00At the Theater<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirVdUuHLPJbaiJ-PN5RAxV_FrHQpnj9Iq9TrUP_N7uf_N7b4NfnG5W0euxGZFFalvq__myRUhd9rYBbrLZ-N2EqVn6cPstAV3SjVOzYSmnW2PhWed-8p2kA0c8f-XDve4lvqVG/s1600/Photo+Sep+16,+6+37+00+PM.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirVdUuHLPJbaiJ-PN5RAxV_FrHQpnj9Iq9TrUP_N7uf_N7b4NfnG5W0euxGZFFalvq__myRUhd9rYBbrLZ-N2EqVn6cPstAV3SjVOzYSmnW2PhWed-8p2kA0c8f-XDve4lvqVG/s320/Photo+Sep+16,+6+37+00+PM.jpg" width="240" /></a>We try not to let disabilities in our family keep us from getting out and enjoying life. I mentioned last time, that sometimes getting out brings with it a certain amount of anxiety. Other times we just know that getting out and some doing things will be a perfect hit. That things will go well. And that's the way things went on our outing last night.<br />
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The <a href="https://www.hct.org/Online/">Hale Centre Theater </a>holds matinee performances of their plays that are kid friendly. The current production is Disney's Tarzan. Whitney is a hug<br />
e fan of the music for this show because it's percussion-heavy. So Melanie got our family tickets.<br />
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As Whit came into the theater and took her seat, we could see she was curious about the sets and lighting. And as the show began she started bouncing in her seat and clapping. She recognized the music and the story right away. Through the whole show she was captivated and excited. She clapped and hooted. Her favorite number was when the gorillas were trashing the camp. I'm pretty sure I heard her trying to sing along during that scene.<br />
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After the show the cast greeted us and Whit got to say thank you to Tarzan and Jane. She was just beaming the whole time. And I have to say, sometimes it feels so good to get out and help Whitney experience something that the "normals" get to do. On evenings like this, her smile of joy says it all.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com0tag:blogger.com,1999:blog-14286916.post-16468650141910797862013-08-30T12:26:00.001-06:002013-08-30T12:26:11.728-06:00Bowling for Friends<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq1isJSh81EuTeylHmeTJtiCh8aL2sbMT80k2XApdaLC_RNjxEbMmkkobPo1djM8_nV_IGaej5sz84y6llzrmsFZ-7SE4l9_aEpuCTgap15x9Ugpv0Tu0yt-PGqtgYEVkqDnlb/s1600/Bowling.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq1isJSh81EuTeylHmeTJtiCh8aL2sbMT80k2XApdaLC_RNjxEbMmkkobPo1djM8_nV_IGaej5sz84y6llzrmsFZ-7SE4l9_aEpuCTgap15x9Ugpv0Tu0yt-PGqtgYEVkqDnlb/s320/Bowling.jpeg" width="320" /></a></div>
Heading out into public for some family fun can cause anxiety for parents of a special needs child. I always wonder about how those we come in contact with will react. And will those interactions ruin a family outing. People are generally kind but an evening is easily ruined by inconsiderate stares, pointing and questions. But sometimes people's reactions can absolutely make your day as well.<br />
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Melanie and I decided to take the kids bowling for a family activity this week. I met them after work at a local bowling alley and we proceeded to get our shoes, bowling balls together and head to our lane. We were pretty early and I was relieved to see that the lanes around us were empty. Whitney would be free to wander a bit and be herself without getting in the way of someone else's game.<br />
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But as we bowled and the night went on, the place filled up. A family was given the lane next to us. As they got set up, I could see they were out for a family night as well. Whitney was instantly in their faces waving hello and trying to honk their noses. Whitney just loves people. I explained Whit's disabilities to them and apologized. But they were kind and said they completely understood. They had a nephew with autism.<br />
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That short interaction would have led to a fine conclusion as we got back to our bowling, but the members of this kind family reached out to my kids. Anytime Whitney, Liam or Avery finished their turn, this nice family gave them a high five or "knuckles" and cheered for them. Before I knew it, Whitney and Avery were sitting on the adult daughter, Missy's lap and talking. Missy complimented Whit and Avery on their cute clothes and hair. The girls were just beaming. Melanie and I were able to relax more than we had in a while and enjoy the evening. This kind family even shared a few nachos with Liam.<br />
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When we had finished our last game, I shook the other father's hand and thanked him for his family's kindness. To them it was no big deal, but this family made our day. Those without someone in the family who is "different" will likely never know the apprehension that sometimes comes with going public places. Will people stare? Will they point or just ignore us? We've come in contact with so many over the years who are kind and accepting. And some who even go the extra mile. I give thanks for that!Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com2tag:blogger.com,1999:blog-14286916.post-15713744005514447342013-08-23T12:23:00.000-06:002013-08-23T12:23:02.468-06:00Whitney Chooses No More Diapers<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAG_BVT2w07_rjyLkM8e3tM1hNe6CSqaeTscd1qyoC4ZPv0_AI33bHh1j_738gS5mU1DKTZdmzEhKvzdJgNtYuyNl04GBnC39ypog2qYELvKVEDfgkHBBsxXLZuIKgcKH8keW_/s1600/Whitney4th.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAG_BVT2w07_rjyLkM8e3tM1hNe6CSqaeTscd1qyoC4ZPv0_AI33bHh1j_738gS5mU1DKTZdmzEhKvzdJgNtYuyNl04GBnC39ypog2qYELvKVEDfgkHBBsxXLZuIKgcKH8keW_/s320/Whitney4th.jpg" width="320" /></a></div>
I've written about potty training seven different times over the years. The first time was six years ago. Melanie and I have worked with Whitney off and on since she was three years old. Usually our efforts end in frustration for us all. In fact, things were so difficult that this past spring, at the age of nine, Whit was <a href="http://raisingadisabledchild.blogspot.com/2013/02/diaper-conditioned.html">actively avoiding using the bathroom</a>. So we kind of threw our hands in the air for most of this summer.<br />
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Then Melanie decided to give the whole thing another push before school started. She used the <a href="http://www.amazon.com/Wet-Stop-W103-Wet-Stop3-Bedwetting-Alarm/dp/B0013LRVWA/ref=sr_1_1?ie=UTF8&qid=1377281189&sr=8-1&keywords=potty+training+moisture+sensor">wearable moisture alarm</a> we had from previous attempts and some padded underwear to make accidents less of a worry to clean up. The alarm actually helped Whit recognize what her body was doing and learn to hold it until she could get to the bathroom. That was a huge help. And pretty soon she was even telling us when she needed to go. It's been a couple of weeks now and Whitney is down to having just one or two accidents a day most of the time.<br />
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I think the main reason we're now having some success is that Whitney made the decision that she wanted it. Before, she wasn't interested or she was even actively fighting it. But now she tells us when she needs to go and patiently waits until we can get her to a bathroom. Other times, her alarm goes off and Whitney realizes it and comes to find us. It's been a long time coming but we're cautiously excited that this might finally be the time. <br />
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School has just started back up now and we're hoping the potty training will just become part of Whitney's normal routine. So far she's ridden the bus to and from school without accidents and everything. Our fingers are firmly crossed that this will continue.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com2tag:blogger.com,1999:blog-14286916.post-5069056093314554162013-08-15T13:23:00.000-06:002013-08-15T13:24:21.683-06:00iFixit Saves the Day<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOATvoxCjCCNGzNNY6aQTa_kxSGvOWdMOMRmc3dvC3pt1NDKPPmrjtWIffz7dHRJKOlGcsZy5LmIUOOIG1v7P-kZPliospVmJhmcM-OQsuu_NhL2cCVgRSWYl8EvUs7wdHTAlk/s1600/Photo+Aug+10,+1+21+43+PM.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOATvoxCjCCNGzNNY6aQTa_kxSGvOWdMOMRmc3dvC3pt1NDKPPmrjtWIffz7dHRJKOlGcsZy5LmIUOOIG1v7P-kZPliospVmJhmcM-OQsuu_NhL2cCVgRSWYl8EvUs7wdHTAlk/s320/Photo+Aug+10,+1+21+43+PM.jpg" width="320" /></a></div>
Whitney uses an old iPhone with <a href="http://www.assistiveware.com/product/proloquo2go">Proloquo2Go </a>to communicate with family and friends who don't speak sign language. It's becoming her primary means of communication. Over the years, this survivor of a phone has taken swims in a sink and a drinking fountain and even <a href="http://raisingadisabledchild.blogspot.com/2012/04/iphone-adventure.html">got a battery replacement</a> after the old one got so used it wouldn't hold much of a charge. I used parts, tools and a repair guide from <a href="http://ifixit.org/">ifixit.org</a> to make the repair back in April of 2012 and things came out great. Whitney was thrilled to have her phone back and I shared the experience with the iFixit team on <a href="http://ifixit.org/2080/fixing-my-daughters-voice/">their blog</a>.<br />
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Everything was going great until that summer when Whitney's poor battered old phone got dropped in the driveway during a visit to grandma and grandpa's house. The screen was shattered and we figured the phone was a goner. I tucked it away in my gadget drawer figuring that was the end of it. Thankfully, we were able to get an iPad on loan from Whitney's school to continue her speech exercises. But that big old iPad with a rugged case on it just wasn't as easy for a little girl to carry around with her and it wasn't the same as her old iPhone friend. It didn't even fit in the drinking fountain.<br />
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Then a few weeks ago, Gwendolyn, the new host of iFixit's YouTube videos contacted me and asked if it would be okay to talk about Whitney and I and our iFixit story in their 10th anniversary video. I was excited and said, "Of course." You can see the great video they produced below:<br />
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I thanked iFixit for the chance to be a part of their anniversary and also half-jokingly asked if there was a discount on screens during the special occasion. Then after the video above posted, a package arrived in the mail. The iFixit folks had sent a new screen for Whitney's phone at no charge! The next free moment I had, I broke out my tools again and used their repair guide to install the new screen in Whitney's old iPhone friend. It worked just like new again. We gave the phone back to Whitney and she walked around the whole rest of the day excitedly telling people about how her phone was broken but now it was fixed. Our whole family is grateful. So Melanie helped Whitney and I make this video to tell Gwendolyn and everyone at iFixit, thank you for saving the day:<br />
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<object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://i1.ytimg.com/s_vi/4e2O0wownu0/default.jpg?sqp=CODTtJAF&rs=AOn4CLCWFKahxWgnufeB6RSC6jnhjYo5Fw" height="266" width="320"><param name="movie" value="http://www.youtube.com/v/4e2O0wownu0?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="http://www.youtube.com/v/4e2O0wownu0?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object></div>
<br />Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com6tag:blogger.com,1999:blog-14286916.post-76186584480186238122013-07-31T13:11:00.000-06:002013-07-31T13:11:08.394-06:00The Trouble with Eardrums<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOnxMst50rMPFcM7U0JHdrQAQDvmxobjvqKMxIv9iufs6F0CGfDeAb6eJuBbVrgJwHEaRagxdOg6D75zotSjZuU404OO0_hK79Py9wmj4jbrWP1Qig1FBDkL8YVOROjpcnHH_C/s1600/Whitney.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOnxMst50rMPFcM7U0JHdrQAQDvmxobjvqKMxIv9iufs6F0CGfDeAb6eJuBbVrgJwHEaRagxdOg6D75zotSjZuU404OO0_hK79Py9wmj4jbrWP1Qig1FBDkL8YVOROjpcnHH_C/s320/Whitney.jpg" width="213" /></a>Whitney was in for surgery again this past Monday. It marked ear surgery number five for my little lady. Whit's ear, nose and throat specialist was concerned about the constant ear infections she continues to have. In his office he wasn't able to really see the condition of her eardrums or her last set of tubes. He recommended surgery to go in and assess the situation. If the old tubes weren't doing the job, new ones could be put in. Or if removing the tubes and stitching the eardrum closed would be a better option, the ENT would do that.<br />
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So it was off to the local children's hospital and after several hours of delay Whitney was in the operating room. She was in for under twenty minutes. During that time, the doctor found a blockage in Whit's right tube. So that one got replaced. But when he started work on her left ear, the doctor found that previous surgeries and infections haven't left much of an eardrum at all. Her previous tube was gone and in its place was just an inflamed hole. It's not likely that Whitney has much hearing left in that ear and the doctor is worried that the bones that mechanically conduct sound waves from the eardrum to the inner ear are also in jeopardy because of all the infections over the years.<br />
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We'll meet with the doctor in four weeks for a follow up. We'll need to look into whether we allow some reconstructive surgeries or whether it will even be worth putting poor Whit through a bunch more pain for something that might not benefit her very much.<br />
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Thankfully, her recovery over the last few days has been pretty good. Ibuprofen has managed her pain okay and she's eating and drinking like normal. So we're relieved but disappointed and waiting to see what the next steps are. Setbacks are never fun but I give thanks that she stills hears in her right ear and with hearing aids she can enjoy her favorite music, <a href="http://www.amazon.com/LeapFrog-TAG-Reading-System-Green/dp/B003JQV9LG/ref=sr_1_1?ie=UTF8&qid=1375297811&sr=8-1&keywords=tag+reader">Tag </a>books and TV shows. This kind of thing is humbling, but since we've been through seizures and other serious health issues, we can put things in perspective and keep moving forward.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com2tag:blogger.com,1999:blog-14286916.post-66455219174156227822013-07-17T15:51:00.001-06:002013-07-17T15:51:21.746-06:00Summertime Progress<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHonp5r_mNbYhE9tSkhlYacDsfPpGwPDZ6SA9k8bO8eAVeDDPtxc49nFvXRHKEjXwUfagHksU_3FW2hrjz4ovfi-Q5EK-u2rzZJfbk6POvocuHUWr92U7njVJHQhnSYmhmuS93/s1600/IMG_1107.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHonp5r_mNbYhE9tSkhlYacDsfPpGwPDZ6SA9k8bO8eAVeDDPtxc49nFvXRHKEjXwUfagHksU_3FW2hrjz4ovfi-Q5EK-u2rzZJfbk6POvocuHUWr92U7njVJHQhnSYmhmuS93/s320/IMG_1107.jpeg" width="240" /></a>Whitney is out of school for the summer and getting into new kinds of trouble. Melanie and I are usually pretty prepared for most things. It's when she's doing new things and progressing that she sometimes gives us mischievous surprises.<br />
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The first of these has been taking showers. Not the kind where we help get the water ready and help her get clean. I'm talking about the kind where Whitney sneaks into the bathroom when we're not looking and turns the shower on herself while she's fully clothed. She's done this a couple times in the last few weeks. And by the time Melanie can get to her, Whit is usually soaking wet and smiling about what she's accomplished. I don't think we mind the interest in showers too much, but it'd be nice if she could learn to take her clothes off first.<br />
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But there's progress on that front too. Melanie has been working with Whit to teach her to take off her clothes at bedtime. She's made the most progress with her shirt. We know this because Whitney has taken to running around the house topless. I'll be sitting someplace reading and she'll wander by with no shirt, sporting a proud smile. Melanie finally got fed up one day and told her to go find her shirt and put it back on. To Mel's surprise Whitney disappeared and returned a few minutes later wearing her shirt again. She'd followed instructions, found her shirt and put it back on all by herself. Mel says she kind of teared up for a moment just thinking about the accomplishment. Special needs parents are so good at savoring the small victories. Who cares if her shirt ended up inside out and backwards?Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com7tag:blogger.com,1999:blog-14286916.post-76194430332359825932013-06-28T12:42:00.001-06:002013-06-28T13:08:26.216-06:00Eight Years of Adventures<div class="separator" style="clear: both; text-align: center;">
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Next week will be the eight year anniversary of Adventures in Raising a Disabled Child. A year and a half after my daughter's birth and about a year after her diagnosis I decided to write about our family's experiences. You can find my first, short, introductory post <a href="http://raisingadisabledchild.blogspot.com/2005/07/introduction.html">here</a>. When I set things up I decided to label the experiences I share "adventures" to give emphasis on the positive things we'd be experiencing. I think it's important to focus on the happy moments, although I've not held back from sharing some of the challenges as well.<br />
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And now Whitney's coming up on her 10th birthday! It's hard to believe. As time has gone by, I've posted less than I did in the early years. I think some of the reason for that, is that raising Whitney has just become life for Melanie and I. It's gotten much harder to distinguish the distinctive "raising a disabled child" experiences from everyday parenting. It's just what we do now. Without even a second thought. But I still find so much inspiration that it's hard not to share.<br />
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As I look back on those first posts, I can see how at how earth-shattering Whitney's 1p36 Deletion diagnosis was for our family even a year after it happened. It makes me glad that I've been writing all these years. Because the central theme of my family's adventures is that there's hope. When a child is diagnosed with a disability, or special needs, as we say now, it dumps life upside down. But life doesn't end when a diagnosis comes. In fact, it's probably just getting started. Need proof that it's going to be okay? Here's a record of eight years of tears, joys and laughter for you to enjoy. And we're just getting started here too...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivaz9OIsufsHrDLqlsCocDtrpNPF0_OsBoRU4Hau-SCN2wgukQ3LqEfyK4PYkdiKOCyZJGlUxylzJqvLBfDS5KNO7TWCQyvfZwEMCmNlOqfo5IXObFHAimLC59Q13SQecxq0qx/s390/WhitneyWinner.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivaz9OIsufsHrDLqlsCocDtrpNPF0_OsBoRU4Hau-SCN2wgukQ3LqEfyK4PYkdiKOCyZJGlUxylzJqvLBfDS5KNO7TWCQyvfZwEMCmNlOqfo5IXObFHAimLC59Q13SQecxq0qx/s320/WhitneyWinner.png" width="291" /></a></div>
<br />Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com2tag:blogger.com,1999:blog-14286916.post-3402290539329613352013-06-14T12:21:00.001-06:002013-06-14T12:26:06.084-06:00Motivating Mommy<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHhK4e_kl5Dc_yUL296gRkREwIIt3FWm1YCI2GNbzGNRsfa4yp0SQFrTN6W3wa2mLz7HyRQrm7WCu7lPw7nNKRO8GqdESGtqMxWpcwp5z6BhPIvB5FK7HaKaGvjmK-rFiR5H5v/s1600/FieldDay.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHhK4e_kl5Dc_yUL296gRkREwIIt3FWm1YCI2GNbzGNRsfa4yp0SQFrTN6W3wa2mLz7HyRQrm7WCu7lPw7nNKRO8GqdESGtqMxWpcwp5z6BhPIvB5FK7HaKaGvjmK-rFiR5H5v/s320/FieldDay.JPG" width="320" /></a>Things have been pretty quiet for us the last few weeks. Whitney had a follow up appointment with the endocrinologist to make sure things were balanced out and looking good. The tests all came back normal, which is always nice to hear.<br />
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She is getting closer to wrapping up her school year which means field trips. I got to join in the fun as her class visited the zoo earlier this week. The class went to a nearby fire station yesterday. And she also had a great time at her annual special ed field day.<br />
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Speaking of exercise, Melanie is training to run a 10k race coming up in July and Whitney has decided to help her out. Mel always runs with some music in a playlist on her phone for motivation. You've got to have some fast paced music to make it up the hills near where we live. And we all know how much Whitney loves stealing people's phones and playing music. She's also getting very sneaky about it.<br />
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So Melanie was out for a training run this past week and had her running mix on. When all of the sudden <a href="http://www.drjean.org/">Dr. Jean and Friends</a> starts blasting in her headphones. Melanie furiously hit the skip next button and kept running. Only to find Christmas music! Turns out our sneaky little music lover thought Melanie's workout mix could use an infusion of early childhood development songs and some Christmas favorites, so she added them to the playlist on Mel's phone. Intentional or not, it looks like Whitney is turning into quite the little prankster.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com0tag:blogger.com,1999:blog-14286916.post-69831813902656549502013-05-22T12:18:00.001-06:002013-05-22T12:18:09.294-06:00The Interpreter Dilemma<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOz5rNB0CdtDyzLkxohnjPqzWcjcSXdh8YqshJT1HkPmwyrSm4PUcr7bYY90S6a-TJIZmIzOlzzbFSexTh5wiCWrmYx5dGTds2Z89XxeUGheqBMbDNAKaTdnBHNqUdQws5PAjz/s1600/Whitney2013.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOz5rNB0CdtDyzLkxohnjPqzWcjcSXdh8YqshJT1HkPmwyrSm4PUcr7bYY90S6a-TJIZmIzOlzzbFSexTh5wiCWrmYx5dGTds2Z89XxeUGheqBMbDNAKaTdnBHNqUdQws5PAjz/s320/Whitney2013.jpeg" width="320" /></a>From very early on in her school career, Whitney has had an interpreter assigned to her. Her interpreter stays with her throughout the school day and signs what's being said in the classroom. It takes a lot of patience and dedication. We know that Whitney divides her attention between the interpreter and her actual teacher who is speaking to understand what's going on in class. But she's always used a mix of what's being spoken and what's being signed to pick up on everything.<br />
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This past school year we've started working with an <a href="http://raisingadisabledchild.blogspot.com/2011/05/talking-with-ipad-and-proloquo2go.html">assistive speech device</a> (An iPad with special software) instead of encouraging Whitney to sign. Our hope is that this will increase the amount of people who can understand Whit. The other side of that equation is the need for Whitney to hear and understand more without having someone sign it to her all the time. So Melanie and I have decided that Whit can go without an interpreter assigned to her in class this fall in 4th grade. This may be an adjustment at first, but there will still be others in class who can sign to her if she doesn't pick up on something. And we're hoping this will help her to focus on who is speaking a little more.<br />
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But it's been a really hard decision to make. We will really miss the wonderful, dedicated people who have worked so hard with Whit over the years on understanding sign and consequently understanding the world around her. And it's been part of Whitney's classroom routine for years now. I think ASL will always be a part of our home and family. But I think it's really time for Whitney to listen and to speak. Melanie and I believe she's capable of both. I guess it's just finally time to take the plunge. I'll be sure to let everyone know how she does. We've already been practicing more with the the iPad at home. I think it's going to help this young lady to better speak her mind.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com2tag:blogger.com,1999:blog-14286916.post-4738966014012139602013-05-08T11:49:00.001-06:002013-05-08T11:49:33.298-06:00Fridge Lock and Other Helpful Special Needs GearThanks to everyone for the suggestions on how to secure our fridge against our snacking young lady. Melanie ordered this simple <a href="http://www.amazon.com/gp/product/B000H3SSOK/ref=oh_details_o01_s02_i00?ie=UTF8&psc=1">adhesive fridge lock</a> on Amazon. It installed easily and so far it's done a great job of stopping Whitney the fridge raider. It's a bit of an inconvenience, but having to unlatch it each time I get in the fridge is easier than cleaning up the mess of having the fridge unlocked.<br />
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Whitney has also graduated from a full car seat with a five point harness. She now rides in style in a pink <a href="http://www.amazon.com/gp/product/B001B91ZC6/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1">Disney Princess booster</a> and she really loves it. But immediately we realized that it's far to easy for her to reach down and push the button that undoes her seatbelt. And since she rides in the back seat of our minivan, we can get back there and quickly buckle it again. Luckily Melanie found these simple <a href="http://www.amazon.com/gp/product/B000UXOER2/ref=oh_details_o01_s02_i01?ie=UTF8&psc=1">seat belt locks</a> to keep Whitney buckled up while we're on the road.<br />
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As we go forward, I'm sure we'll find other interesting situations we'll need to be prepared for. But I'm grateful for the special needs parents who have gone before. And thankfully, they have created the demand for interesting products to help keep Whitney safe and sound.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com0tag:blogger.com,1999:blog-14286916.post-8641105277681041502013-04-16T12:41:00.000-06:002013-04-16T12:41:16.361-06:00Raiding the Fridge<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD3nTN9BUb4WgU3Jgf9pfAUMOx8NeYc8jdMuHRyEeV9TeKeIi67dMP9mr4l7U_EBE_21ohifHk0shtTbA5tvNoq5K7m4i63JjgdQ1Sl9tQI-oqCG5HpiSpIG_l4nIAaOUNhivQ/s1600/Fridge.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD3nTN9BUb4WgU3Jgf9pfAUMOx8NeYc8jdMuHRyEeV9TeKeIi67dMP9mr4l7U_EBE_21ohifHk0shtTbA5tvNoq5K7m4i63JjgdQ1Sl9tQI-oqCG5HpiSpIG_l4nIAaOUNhivQ/s320/Fridge.png" width="177" /></a>Whitney is determined to do more and more things independently. Sunday morning while Melanie was getting ready for church and I was at meetings, Whitney decided to try her hand at fixing herself a snack. She's attempted this before by finding crackers, cereal or something else left out on the counter in the kitchen. But this time she really outdid herself. She tugged at the door of the fridge but just couldn't manage to pull it open. So she tugged at the freezer compartment door above it. This was a longer reach for her, but because it's a smaller door, Whit managed to get it open. <br />
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Once she got the freezer compartment open, she was pleased to find two of her favorite things inside: bologna and dinosaur shaped chicken nuggets. Both frozen solid of course. She pulled her loot out of the freezer and headed for the basement where she could enjoy her snack in peace.<br />
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When Melanie found her several minutes later, she was relaxing in the family room trying to gnaw through the packaging on the frozen bologna. The dinosaur nuggets were already open and Whit had apparently eaten her fill of those before Melanie arrived on the scene. Whitney appeared proud of herself but kind of perplexed about why the bologna was so cold and hard.<br />
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Mel put the bag of nuggets back in the freezer and life went on. Until yesterday, when Whit's little sister, Avery, asked to have some dinosaur nuggets for lunch. Melanie reached into the bag and pulled out all kinds of headless dinosaurs that Whitney had put back after decapitating them during her snack.<br />
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So now we will either need to find a way to better secure the fridge and its contents or maybe I'll just teach Whitney how to use the microwave too.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com4tag:blogger.com,1999:blog-14286916.post-20192432126604313992013-04-05T14:06:00.001-06:002013-04-05T14:06:20.984-06:00The Razor Misadventure<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNSXTJcfNV5SGlWDLD-Juthzh_pjXnNiMsuitsP04lKuc2-yBiDvG8UM-6qPjPhIniCQ5ioars_17OIzovxyyLwmelhyphenhyphen7ZhcD7IwCMve5-AGLDG9AYNUxEzGK3e7HX_Tp22XyL/s1600/8612718932_d233c7b809.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNSXTJcfNV5SGlWDLD-Juthzh_pjXnNiMsuitsP04lKuc2-yBiDvG8UM-6qPjPhIniCQ5ioars_17OIzovxyyLwmelhyphenhyphen7ZhcD7IwCMve5-AGLDG9AYNUxEzGK3e7HX_Tp22XyL/s320/8612718932_d233c7b809.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Whitney and her sister, Avery, getting ready for bed</td></tr>
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Whitney is a sweet young lady with a very curious mind. Sometimes her curiosity gets her into some interesting situations. I've taken to calling them misadventures. Here's an interesting example.<br />
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I shave in the morning using an electric rotary razor. Some mornings when Whit is awake, she comes into the bathroom and watches me shaving before I head out the door. Well, curiosity must have gotten the best of her with regard to my razor, because I turned it on one morning this week as I was getting ready for work and it did rattled and sounded funny. I pulled off the top and found a couple of long brown hairs. I pulled them out but decided I'd better look inside the individual heads. And I'm glad I did. Inside of each one, was a ball of Whitney's long, light brown hair. I couldn't believe how much was in there. I got things cleaned up and the razor worked fine. But the mystery of how the hair got there remains.<br />
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The only thing Melanie and I could figure out is that Whitney got into our bathroom unseen at some point the day before. She'd gotten my razor out of the drawer and removed the cover. Then she'd managed to turn it on. Whitney knows she doesn't have hair on her face, so she must have decided to hold it up to the hair on her head. I can only imagine the unpleasant surprise she must have gotten when the rotary blades got a hold of her long hair and began to pull it in. Luckily, she was able to get it turned back off. Then she must have decided to put the cover back on and put it back in the drawer so no one would know. She didn't try to tell Melanie or me about it and thankfully, and the whole episode must have only lasted a couple of minutes. We couldn't see patchy areas in her hair. So the surprise hairballs were left waiting for me the next morning.<br />
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I'm really glad she wasn't hurt and I've got to admit, seeing where that little girl's curiosity leads her is pretty funny. And, luckily, we've all got a pretty good sense of humor around our house. With some of our adventures, it comes in handy.Natehttp://www.blogger.com/profile/17394193811848413412noreply@blogger.com0