tag:blogger.com,1999:blog-32977568911594237672024-03-13T17:31:36.442-04:00Our Redirected FlightKellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.comBlogger107125tag:blogger.com,1999:blog-3297756891159423767.post-77194664884834265992015-10-09T15:21:00.002-04:002015-10-09T15:24:13.955-04:00Why now and why New YorkWhen Grayden was around two months old it was recommended to us by the local physiatrist to have him wear AFOs to help bring his feet into a more neutral position. At the time he was presenting with extreme Dorsi-flexion (basically, it looked like the top of his feet were touching his shins). After receiving the AFOs we put them on him one, maybe two times. They were bulky on his feet and allowed very little movement of his legs because they seemed so heavy for his little legs. My gut told me that they weren't right for him so we never used them. A little while later we were introduced to the Anat Baniel Method where I learned a new perspective regarding braces. I also learned about Dr. Jordan. Anat highly recommends Dr. Jordan because of his attention to the function of movement and his ability to provide braces that provide support where /when needed but not to "over brace".<br />
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We began sending videos of Grayden documenting how he moved to Dr Jordan so that he could help guide us regarding when/if bracing was necessary for Grayden. Each time we sent him videos he would carefully analyze them by breaking them down frame by frame and would call/write to us to explain his thoughts. We had yet to experience a doctor who so thoroughly examined Grayden's true functioning. The local doctors seemed to take a quick look at his outward appearances and his intoeing and based on a 5-10 minute exam, would make quick decisions that we felt were based on what they "typically do for kids with SB who present like Gray", rather than truly looking at his function. I remember once going to the local doctor in Grand Rapids at MFB and them asking to see how Grayden was walking. At the time, Grayden was using a push toy to help him walk and I had forgotten to bring it. The doctor gave him a stool on wheels and asked him to walk, even after I said that it would not be a good representation of what he could do, nor did I believe it would give a clear idea of his function, but the doctor preceded and then based on what was observed there were recommendations made. It was recommended that Grayden wear AFOs (ankle foot orthoses) with a twister cable to help turn his feet out. We were told that by allowing him to walk the way he was that we were causing damage to him that would need to be surgically corrected later. We were told that he had tibial torsion that would need to be surgically coreccted by breaking his bones and turning them. Yet still, my instinct told me not to listen. When I asked to see research that supported the use of the twister cables, no one could produce any for me. All that I found in my own search were 2 outdated articles done in the 70s on kids who had CP. When we asked Dr Jordan for guidance he told us that he would absolutely recommend against the use of the cables because in fact they could cause harm to Grayden at the knee joint. He also said that they pull the leg outward but it is done passively and they don't help to teach the muscle anything. So, we filled the script and got the cables and AFOS from the local orthotist (for fear I would be turned into CPS if I didn't), but never actually had Gray use them. We also switched to new doctors in Ann Arbor who were more in line with us and our thinking and agreed with what we shared regarding Dr Jordan and his recommendations. </div>
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We continued to send Dr Jordan videos every six to eight months and made our first trip to see him when Grayden was around 30 months on our way back from Philly. Dr Jordan spent three hours with us that day, closely observing Grayden's movements while he played between the waiting room and his office. Taking time to see him move in all different ways. He spent a lot of time talking to us and describing what he was observing. Dr Jordan did not believe that Grayden had true tibial torsion and showed us exactly why not. He described in detail the ins and outs of how/why Grayden moves the way he does. We left that appointment with a recommendation to continue to allow Grayden to grow and develop without the use of braces and to continue to send video. So, that is what we did. We continued to allow Grayden to grow and learn meanwhile continuing with ABM lessons. And that he did! He has grown and he has changed! </div>
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This summer we began talking more to Grayden about Spina Bifida to help give him an understanding about what that means for him and to give him the language to answer questions when people get curious. During our discussions he started asking us about bracing for his feet and if there was something we could get to help his legs turn straight. I contacted Dr. Jordan to let him know that Grayden was asking and to see if he felt it was time for another in person evaluation. He agreed that it may be time to see him again so we called and scheduled.</div>
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So, here we are today with our first true set of AFOs and elastic straps. So, why now you may be wondering? What makes him "ready" now? And so here is my attempt to explain the brilliant mind that is Dr. Jordan and what he explained to us. I should also add, another really great thing about Dr Jordan is that he does not just recommend braces and send a script to another office to fill, he works very closely with his orthotist in his very own office to design and create them and is there when you pick them up to ensure they look and fit the way that he envisioned. </div>
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So here is my attempt at explaining and summarizing, although there is a lot more detail to it.....(you would think bc I'm an OT that I would totally grasp all of this....I'm forever a student:))<br />
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Both the hamstrings and the glutes extend the hip and bring it forward. The hamstrings extend and internally rotate and the glutes extend and externally rotate the hip. We will use the elastic straps as a sensory component to help encourage Grayden to activate his glutes instead of using his hamstrings so much. We are not trying to force the muscles out, rather the straps will put tension on the muscles that internally rotate to say "slow it down, okay, you've got this other muscle, now use it". Around the age of 5-6 the spinal cord matures and the last bit of peripheral fibers are sent to the glutes, so if we would have tried this when he was three it may have looked good but there would have been little benefit because he would not have had the nerve supply needed to that muscle. So again, the straps will help provide a Sensory feedback, they will not force, but rather create stability and resistance to slow the movement down to illicit the use of the glutes. The AFO will provide a better landing for when he steps. Kids can still work around the straps so we don't know what Grayden will do with them. Only time will tell. </div>
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On the first trial in the office, Grayden did not like the straps and AFOs. It is a new variation of movement that he is not used to. Dr Jordan said it will be like stepping off a boat when he takes them off or puts them on. He will have to readjust to the feeling of how to move. The elastics will be used as a training tool and are not meant to be worn all of the time. Wish us luck as we figure out how and when to use them and as we encourage Grayden to explore this new variation! </div>
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Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-69800779769279698602015-07-14T21:53:00.001-04:002015-07-14T22:20:09.392-04:00Five year ago....<div class="separator" style="clear: both;"><br></div>When I was given the go ahead to eat following my fetal surgery five years ago, my mom, Austin and I ordered Chinese take out. I still don't really believe it, but this is the fortune that I received in my fortune cookie that night.<br>
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So tomorrow I will celebrate Grayden's fifth "butt day". But what I will be celebrating are the incredible doctors and individuals who were willing to think outside the box and take the risk to try something unheard of. I will celebrate because there are doctors/people out there that are striving to make a difference in the lives of people like Grayden. People and doctors who believe Grayden and the many other people living with Spina Bifida are worth it!! Tonight as I reflect on the opportunity we were given I am incredibly thankful, but what I know now is that Grayden would be incredible fetal surgery or not.<br>
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Thank you to all of you who supported us during this time 5 years ago and those of you who continue to cheer us on as we travel this journey. We are blessed beyond belief to have some pretty amazing people in our lives!Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-87999565773658027452014-09-14T08:20:00.001-04:002014-09-14T08:26:32.968-04:00Three Months<div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz7TyXyze2q6XZjN6g6kDduRUBkUnh5XgqUvJghJBKs_oYqd3PP5g4FTSMV9c7wyXOoRDkmEfqkImdehcsUvk0jIBTS4J4h5TwWADDskgu0dWPXF2gaULtweG7ULQoeESwfHV_N0Yvo88/s640/blogger-image--370292125.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz7TyXyze2q6XZjN6g6kDduRUBkUnh5XgqUvJghJBKs_oYqd3PP5g4FTSMV9c7wyXOoRDkmEfqkImdehcsUvk0jIBTS4J4h5TwWADDskgu0dWPXF2gaULtweG7ULQoeESwfHV_N0Yvo88/s640/blogger-image--370292125.jpg"></a></div><br></div>It's hard to believe that Kinsen is three months old already. He has definately been my baby that loves to be held. He is not yet on a consistent daytime schedule, but is my best night sleeper. He started sleeping for 8 hour stretches about a month ago! Kinsen is well loved by his older brothers and gets more smiley everyday! He fits our family so well and makes us feel so complete!<br>
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I am loving every minute of this newborn stage and trying to soak it all in, as Kinsen will probably be our last baby. <br>
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As for the big brothers....<br>
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Zander had been looking forward to becoming a big brother for a second time since we told him we were having a baby. He made the sweetest card for Kinsen to bring to the hospital and also one for Dr. LaGrand telling him thank you for taking such good care of us. Zander had asked a lot of very specific questions about the birth throughout my pregnancy and the morning of, he told me at breakfast that he was worried about me. He has such a sweet heart and is definitely the protector of both of his little brothers. He tolerates and accommodates so much and sometimes I think even too much. He has been so conscientious of Kinsen, trying to be super quiet if he is sleeping and letting me know as soon as he makes a peep that he needs me. <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikX63vcCvgYTTa6H7PTRfGvL2RqcbBL8aUd4lZlYhEDljz2Sg-vU7CYdsJxwvxKVE2-LqLh4A8KURhEZaLjBhCzfGblIRyTupmrKk7d-TBguEHfpIfwcCssosgsROWqNzzeHPsYS3GYI0/s640/blogger-image--1897468353.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikX63vcCvgYTTa6H7PTRfGvL2RqcbBL8aUd4lZlYhEDljz2Sg-vU7CYdsJxwvxKVE2-LqLh4A8KURhEZaLjBhCzfGblIRyTupmrKk7d-TBguEHfpIfwcCssosgsROWqNzzeHPsYS3GYI0/s640/blogger-image--1897468353.jpg"></a></div><br>
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Grayden has totally shocked me on how he has responded to Kinsen. Prior to his birth he would tell everyone and anyone that he did not want a little brother and that I was not going to be allowed to hold Kinsen because I could only hold him. I was very worried about how he was going to adjust to it all. The few times we were around infants he acted horrible and didn't want me to even look at the babies. To my surprise, Grayden has been great about Kinsen! He was a little hesitant at the hospital to pay him too much attention and spent a lot of time by my side holding my hand and avoiding Kinsen all together, but since we have been home he has been so interested in him. He is constantly wanting to kiss him and wanting to help with things. He will also tell me the minute he makes a peep that I need to pick him up. He is also full of questions about Kinsen. <br>
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I am loving our family of five! This past week has been great. My only wish is that both parents could take maternity leave because having Austin home this week has made the transition much easier. I am not looking forward to him returning to work next week. <br>
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<br></div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-7498296810431193282014-05-11T10:07:00.000-04:002014-05-11T10:07:52.748-04:00Fair99 percent of the time I do not even think about Spina Bifida. It doesn't cross my mind and most days, parenting Grayden is no different than parenting Zander. Don't get me wrong, parenting in general is hard and is definatly a learning curve, but the same things that I worry about for Zander, apply to Grayden. But some days, out of nowhere the wind is taken out of our sails and we are forced to have to think about SB and decide how to navigate. We are forced to have to pull out our roadmaps, consult with our friends, and put on our advocate hats. Friday was one of those days. <br />
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I have to start by saying that growing up, I was never good with things not being fair, mostly if it had to do with my sister. Maybe it was a second born thing, but I hated it when things didn't feel or seem fair. I thought that I had gotten better with the whole idea of "sometimes life isn't fair", and that I had matured over the years, but now that something doesn't seem fair for my child, well it just plain sucks!<br />
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We are beginning to plan for next school year regarding who will be going to school where, and who will be watching Kinsen and when. My mom is retiring and has offered to watch Kinsen and Gray two days a week, which means we need to find care for them the other three days a week. One of our neighbors has offered to watch Kinsen and I was hoping to find a three day a week, all day preschool for Grayden (which is very difficult to find, as most preschools do not design their time around two working parents' schedules). I found out yesterday that the preschool that Zander has been going to since January has openings now in their three day program, so I was relieved to think that we had found our solution, until I found out that they were not willing to accept Grayden, because he does not meet their requirement to be potty trained. And to this I say "It's just not fair"! It's not fair that they can not allow him access to their program over something that he has no control over, something that we are working on, but is going to take time and problem solving.<br />
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So now I sit here trying to decide, do I fight and advocate or do I decide I don't want him there if they are not even willing to consider how they could accommodate for him? <br />
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The good news is, I love the childcare program at my school, where Grayden currently attends. His teachers are amazing and Grayden LOVES it there. He can stay there until he goes to Kindergarten, but they don't do part time care (we would pay for full time, even if he only goes three days), and the majority of the kids are between 2 and 3 years old, so I was hoping to eventually give him a preschool type experience with older kids before he goes to Kindergarten.<br />
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I am mad, sad and frustrated! I am sad for Grayden that he doesn't have the same options as Zander did for preschool! I am mad that it feels like he is being discriminated against! And I am frustrated that to even possibly get him those opportunities that I will have to advocate and fight and spend extra time. Of course, I am willing to, and I would travel to the moon and back for my kids, but sometimes it is just plain exhausting to think about! And mostly, it just doesn't seem fair, and I am just not okay with that!Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com1tag:blogger.com,1999:blog-3297756891159423767.post-19109663474913707532014-03-17T22:23:00.000-04:002014-03-17T22:29:57.538-04:00Grayden's WheelsAfter 8 months of going back and forth with our insurance, we finally picked up Grayden's new wheels today! We are so excited!<br>
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Austin and I decided last summer that we would start the process of getting Grayden some wheels. After many chats with my great friends who share this journey with me, we decided to go forward sooner than later. <br>
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We want Grayden to view the chair as one option or variation for how he can navigate his world. We want him to view it as a positive option that allows him choices. Basically, we just want him to know that no matter how he chooses to get around, that we are completely okay with it. We envision that he may choose to use his wheels for long distances, keeping up with friends, and maybe even sports. Ultimately, Gray will figure it out as he goes with what works best for him.<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnrz25oX512N6MYRxYZBSupIwxy9mnGZc1r-pz_IytHn3bCcULfY5x1vKLsCEs451C1zyerFu1MfSLoKeOWxqAXdz3cx7cJb4bq-roYMlqhzAyo4Qnf5vjKo4KPktyhe3_8V4bkY6e_P4/s640/blogger-image-461744842.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnrz25oX512N6MYRxYZBSupIwxy9mnGZc1r-pz_IytHn3bCcULfY5x1vKLsCEs451C1zyerFu1MfSLoKeOWxqAXdz3cx7cJb4bq-roYMlqhzAyo4Qnf5vjKo4KPktyhe3_8V4bkY6e_P4/s640/blogger-image-461744842.jpg"></a></div><br></div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-35545217986040585892013-12-23T21:42:00.000-05:002013-12-23T21:42:22.009-05:00Merry Christmas<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #990000; font-family: Verdana, sans-serif;">MERRY CHRISTMAS FROM OUR FAMILY TO YOURS!!</span></div>
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Every year I tell myself that I am going to send out Christmas cards, but I never seem to be able to get them out. I do really love receiving Cards and Christmas letters from all of our friends and family, so I thought I would do a close second and give a little blog update.</div>
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Grayden continues to amaze us every day. He is still attending the child care program at my school and loving all of his friends and teachers there. He also continues to work with Ms. Rene for his ABM lessons monthly. .Grayden lights up any room that he walks into and loves to be the center of attention. He loves music and dancing and tagging along with his big brother Zander who he loves and adores. He is also showing us his strong independence as a three year old and his ability to test our patience daily:) Grayden has some big changes this year, as he will be starting the new year without his brother in his classroom as well as becoming a Big Brother this summer! We are also excited to watch him as he learns to downhill ski with his Papa Jack and Gma Karen this winter. </div>
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I can't believe that Zander is almost five years old!! He continues to grow into a compassionate boy with the biggest heart I know. He is such a loving big brother to Grayden and he is so excited to have another baby in the family! Zander really enjoyed our pool this summer and playing with the neighborhood kids. He has also really loved anything having to do with writing or art lately. He has been really interested in learning to spell different names and words and it is so much fun to watch him as he learns. We have made the decision to switch him from my school childcare program to a preschool program in Hudsonville for the remainder of the year. He is so excited to start school where the neighbor girls attend. He has been going to speech therapy both at our local school as well as at a local outpatient center. He is making great progress on some of his speech sounds and at his new school he will have the opportunity to work with the speech therapist there two times a week in addition to working with Ms. Juli (his other speech therapist). </div>
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I had a great year in 2013. Our new home has a pool, so Austin and I enjoyed hosting many get togethers this summer with friends and family. It was so nice to basically vacation in our own backyard all summer! We love our new neighborhood, but were a little sad when our closest neighbors moved at the end of the summer:( I continued with my Anat Baniel training and will officially be done in early April of this year. It has been an amazing learning experience these past three years, and I am looking so forward to sharing this work with other kids and their families in our area. This January, the boys will be coming with me again to California with my mom, Robyn, and Jill. It should be a great trip! I am still loving my job at Ken-O-Sha and feel so very fortunate to have a career that I enjoy and where I have such great coworkers. And lastly, I AM SO excited to meet our third little one!! He or she will be arriving sometime in June of this year!! </div>
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As for Austin, he continues to work for West Ottawa Public schools as the assistant food director. He continues to learn about the job and we were lucky to go with him this summer on a family trip to Kansas City while he attended a school nutrition conference. We had a great time exploring a new city, and going to places like Legoland, the Aquarium, and a Tigers vs. Royals baseball game. He too, enjoyed hanging by the pool this summer and entertaining. He continues to be the chef for our family and has recently been creating and brewing his own beer. </div>
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<span style="color: #990000;">We wish all of you the happiest</span></div>
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<span style="color: #990000;">of Holidays and a great NEW YEAR!!</span> </div>
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With Love,</div>
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<span style="color: #274e13;">Austin, Kelly, Zander and Grayden</span></div>
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<br />Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com1tag:blogger.com,1999:blog-3297756891159423767.post-83099748651011223642013-09-22T10:50:00.000-04:002013-09-22T11:01:16.790-04:00Grayden is Three<div class="separator" style="clear: both; text-align: center;">
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Somehow overnight my baby turned three this week. He has turned into such an adventurous, fun loving, silly, determined toddler. Time really does fly by. Incredible how much I have learned and grown as a person in these last three years. Who knew such a small little guy could teach me such big life lessons? So thankful for this journey we are on and all the amazing people we have met because of it!<br>
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We spent Grayden's birthday at The University of Michigan at the Spina Bifida clinic. (I know, mom of the year for scheduling appointments on your kids bday). I had been contemplating switching Gray's specialist to the U of M in hopes that they may be a little more progressive in their treatments and in their way of thinking. I was completely impressed with everyone we met and overall it was a great experience. Lucky for us, the Urologist that we will be seeing, travels to Kalamazoo once a month so we will be able to see him there. I definitely walked away feeling more understood and on the same page with the specialists we met there, so I am feeling very confident about our decision to switch.<br>
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Our family all chipped in and we bought Grayden a recumbent tag along bike for his birthday! It is awesome and I would highly recommend it. This will allow him to be a more active participant in family bike rides! We also were fortunate to get to buy one of our neighbors swing sets (considering we told Zander we would get him one for his birthday back in March). The boys have been having a blast playing on it together!<br>
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In other news, I have been running for the last eight weeks and will be running my first 5k since 8th grade this upcoming Saturday! I am excited and nervous all at the same time!<br>
<br>Don't forget The annual <a href="http://wmspinabifida.org/strollnroll/Home.html">Stroll n' Roll</a> is less than a month away. We would very much appreciate any support you would like to offer. We would love to have you join us as we walk with Grayden's Gang and continue to Redefine SB, or if you can't join us, any donation would also be very much appreciated. <div><br>
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We would also like to invite any of Grayden's Gang to join us at our place following the walk for some football and food! Please let us know if you plan to come, either by phone, email or Facebook!<br>
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Who wouldn't want to come and have this much fun?? </div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-86402273789882541402013-09-15T10:47:00.001-04:002013-09-15T10:47:37.274-04:00Calling all Grayden's Gang!It's that time of year again! This year the West Michigan Spina Bifida Organization's annual Stroll n Roll will be held at The Frederick Meijer Gardens on October 19th. We would love for you to join us and walk in support of Grayden and all of his buddies as we raise awareness and continue to redefine Spina Bifida!<br />
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This past year Grayden was a scholarship recipient and received a 1000 dollar scholarship to be used towards our Anat Baniel Method lessons with the amazing Ms. Rene! The money raised by the Stroll n Roll is what made that possible. There were also 9 other scholarships awarded to other kiddos who have Spina Bifida this year!<br />
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If you would like to join us for the walk and would like to purchase a Grayden's Gang shirt, please let me know no later than September 30. You can email me at kellygoff06@gmail.com or comment below. We would love for you to join us for the walk, but if you are unable to walk with us and would like to show your support you can donate to our team by clicking the we pay link at the top of my blog. Any amount helps!<br />
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The following link is the official link for the walk, which contains more specific details!<br />
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<span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Helvetica; font-size: 15px; line-height: 19px; white-space: nowrap;">http://www.wmspinabifida.org/strollnroll/Home.html</span><br />
<span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Helvetica; font-size: 15px; line-height: 19px; white-space: nowrap;"><br /></span>
<span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Helvetica; font-size: 15px; line-height: 19px; white-space: nowrap;">You do not need to register, because I have registered our team just let me know if you plan to walk as I will need a final count for our team since lunch is provided following the walk.</span><br />
<span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Helvetica; font-size: 15px; line-height: 19px; white-space: nowrap;"><br /></span>
<span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Helvetica; font-size: 15px; line-height: 19px; white-space: nowrap;">We look forward to seeing you all on October 19th!</span><br />
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<span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: Helvetica; font-size: 15px; line-height: 19px; white-space: nowrap;"><br /></span>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-49357461073734497652013-07-20T18:38:00.002-04:002013-07-20T20:10:43.872-04:00Forth of July Week<div class="separator" style="clear: both;"><br></div>We spent a week in the UP again for the week of the Fourth of July. We had a great time enjoying family time and spending time outside relaxing, fishing, swimming, and taking boat rides. I just love to watch the boys and all of their excitement. I wish I could capture it in a jar and have it forever. They constantly remind me to appreciate the little things!<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDtSUmYRX3tErYzW8rNJ8TILOuA9Eulu6re5TmmgX7kZok1XisbtvOoYPoyfMOC4kTk_m5QzP6OZHhFMPoC6LMcykz_FRfAerEALqdsFUlJGHbUJyMXrFij5QR3dUhKltw-C4bUXTnvOY/s640/blogger-image--1136286330.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDtSUmYRX3tErYzW8rNJ8TILOuA9Eulu6re5TmmgX7kZok1XisbtvOoYPoyfMOC4kTk_m5QzP6OZHhFMPoC6LMcykz_FRfAerEALqdsFUlJGHbUJyMXrFij5QR3dUhKltw-C4bUXTnvOY/s640/blogger-image--1136286330.jpg"></a></div><br>
<span id="goog_886247992"></span><span id="goog_886247993"></span>Kayaking with Papa Jack</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcAbu894gaIRqkLyBqrMnv7AhMSHBxxqUuZ6HvjiCNkJWB-kAgDUPkWOllbwQ4aQuiFpvVyENoGEqsMvp3RJYorIBb-YWoi6EbuVceqVweiNhIgekZjTqXivA-bdeNHQERxPfV3J4R8zI/s640/blogger-image-1190163632.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcAbu894gaIRqkLyBqrMnv7AhMSHBxxqUuZ6HvjiCNkJWB-kAgDUPkWOllbwQ4aQuiFpvVyENoGEqsMvp3RJYorIBb-YWoi6EbuVceqVweiNhIgekZjTqXivA-bdeNHQERxPfV3J4R8zI/s640/blogger-image-1190163632.jpg"></a></div>Practicing casting their new fishing poles</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2_8K6SCPgITvUsKgtRBskAyWhxe5mA7jp4PtptUVoNzHoTu2IybsC8ezUF2wHl0dCEu-4tJMBzovVb6nUXIG6lziNr7w4JRz_ya-fpjNc4EKbQsTXQEf3KRbRjx6dCBLJVoGlz4ayEyY/s640/blogger-image-1101283221.jpg" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq-9FjISbL0Yb1Ie4eM1T2gIFh6RFe8c-bCpyYSN2oRsXe2cnC4x22jpojWfAQED5m-X1N3RYugmfRpgD-oEc9wjhpNH8Ebh14xqUqNrzM-3K7BL-L8jUMgoYXXft5flS-bEXGtkLrEoY/s640/blogger-image-125856171.jpg"></a></div>Pedi and Mani</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNwnRtnal_YORdcmgyEdauZpVA-aSyN1LMXBp6qyW3rLkSh3ivVvNeJbH7Sq35e9fFU2oOfXbnrWLU9cFKx8UbQs4hqoaeexXLST7cLD-GpODfQyYkicGlCZ2fw2WcWXnzmkcSR3iuirU/s640/blogger-image-636158599.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNwnRtnal_YORdcmgyEdauZpVA-aSyN1LMXBp6qyW3rLkSh3ivVvNeJbH7Sq35e9fFU2oOfXbnrWLU9cFKx8UbQs4hqoaeexXLST7cLD-GpODfQyYkicGlCZ2fw2WcWXnzmkcSR3iuirU/s640/blogger-image-636158599.jpg"></a></div><div class="separator" style="clear: both;">We hope you are all having a great summer! </div><br></div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-58735696885180582572013-04-10T22:30:00.000-04:002013-04-10T22:56:23.805-04:0030 Month Visit to CHOPWe returned to Philadelphia last week for Grayden's 30 month follow up as part of the <a href="http://www.spinabifidamoms.com/english/about.html">MOMS Study</a>. It feels like just yesterday that we began this journey, yet it seems like a lifetime ago that our lives were forever changed. What an experience it has been so far! <br />
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We left on Easter Sunday on our first family road trip outside of Michigan. We made a stop in Pittsburg to stay for one night to break up the drive and then headed on to Philadelphia Monday. We were so excited to be back in one of our favorite cities that we now consider our home away from home. <br />
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<span style="font-family: Verdana, sans-serif;">We spent the first night walking through the Campus at UPenn and then hit up our favorite restaurant for dinner.</span></div>
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Tuesday and Wednesday were busy days filled with appointments. Tuesday, we spent the morning with a GI doctor (who we had requested to see) to discuss bowel management for the future. I don't want to share too many details on here (for Grayden's sake when he is older), but this is our biggest area of concern/frustration for the future. We are still exploring our options and gathering as much information as we can. We left the appointment with a plan, but are now second guessing that plan. We would like to try options that include as little medication to no medication first if possible, just not sure how this is all going to work. So frustrating to say the least!<br />
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Tuesday afternoon, Grayden had an ultrasound of his kidneys and bladder and then a physical exam and developmental testing by a pediatrician Austin and I also had to fill out questionnaires and answers lots of questions about us and our family. During the testing for the study, the examiners don't really report much of what they are seeing or observing. We are allowed to ask questions, but they don't give us scores. They are also not allowed to know what part of the study we were in or where the location of Grayden's lesion. Even though we weren't told a lot during the testing it was still fun to watch Grayden interacting with all of the professionals and to hear the little comments that they did make about his movement and language!<br />
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Tuesday evening, we rode the Subway downtown and spent time at a local park that we frequented while we were there three years ago. It was so much fun to watch the boys play. During the summer of 2010, Zander and I spent a lot of time at that park. Much of that time for me was spent sitting in the wheelchair watching Zander play, and wondering what our lives would look like in the future. I don't think I could have painted a better picture then watching my boys playing on that playground together. We are happy, life is for the most part "normal", and those boys bring us so much joy. If I had only known back then...<br />
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Wednesday, Grayden and I returned to the hospital for more appointments, while Zander and Daddy had a special day in the city. They went to <a href="http://smithplayground.org/">Smith's Free Playplace</a> in the morning and then walked around downtown in the afternoon. Grayden had developmental testing all morning. It was exhausting but very fun to watch. By the end, I thought he might fall asleep because he was answering questions with his head on the table. He got a little slap happy towards the end as well, and started saying some pretty silly answers to the questions he was being asked. Just a tad frustrating for me, because he wasn't answering some of the questions that I knew he was capable of, but I couldn't really blame him after 3 hours of testing!<br />
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The afternoon, was spent with the Urologist, Dr. Carr doing <a href="http://kidney.niddk.nih.gov/kudiseases/pubs/urodynamic/#urodynamic">Urodynamics </a>testing. Grayden was cracking me up during the tests because while he was being cathed he told the doctor multiple times, "I don't want that decoration on my penis.". Grayden continues to have healthy kidneys and his bladder looks good as well. This is another area that a game plan has been started, but we will continue to work out the details as Grayden gets older.<br />
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We had the opportunity to meet another family who had fetal surgery while we were there, who had their beautiful baby girl on Monday. It is always fun to meet other people who are on this same journey. We also had the chance to see the doctor who delivered Grayden as well as some of the other professionals that we had the opportunity to work with. And as always, it is so nice to see Jamie, the study coordinator who is pretty much extended family!<br />
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Thusday was a day just for our family. We started the morning at the Market for breakfast and then rode the city bus to the <a href="http://www.pleasetouchmuseum.org/">Please Touch Museum</a>. The boys had a blast!<br />
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Friday, we woke up super early to travel to New York City to see an orthopedic doctor, who is highly recommended by our ABM team. I'm going to save a whole post for our visit so stay tuned!! <br />
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The MOMS study received a second grant to follow up with the participants between the ages of 5 and 8, so we will again be traveling back to Philadelphia in the future and we can't wait!!<br />
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And lastly, check out this boy doing the stairs at the park!<br />
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<br />Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com1tag:blogger.com,1999:blog-3297756891159423767.post-64195094653625922622013-03-11T15:02:00.000-04:002013-03-11T15:02:49.618-04:00ABM ContinuedI promised I would be back to write about our recent experience working with Anat and her team. Grayden was able to have nine lessons with Anat, Sylvia, Neal, and Chris. Grayden was his usual flexible self and quickly warmed up to and charmed each of them. I was again reminded why I chose this path for him, and really for us. It continues to change my outlook on "therapy" and has given me a new lens to see through. This work is not about working on "what's wrong" with Grayden, it is really about taking him as an individual in this moment and moving forward. It is not about strengthening what is weak, or "fixing" what is wrong, but rather about optimizing what he has. It is about empowering him by making connections and changes in his brain using the vehicle we call movement. What Grayden does with that information is limitless. I am nearing the end of my basic professional training and am so excited to share this work with others. I will begin my Children's Mastery training in July and cannot wait to learn more specifically how I can share this work with other kids. <br />
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<tr><td class="tr-caption" style="text-align: center;">Sylvia</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Chris </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Anat</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Neal<br />
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I promise to try to keep the blog updated more often. We have some exciting travel plans coming up, as we are gearing up to return to Philadelphia for Grayden's 30 month check up for the study. We are driving down as a family over our spring break and making a vacation out of it so that we can visit some of our favorite spots while we are there! We are also planning a little side trip to New York to visit a highly recommended doctor to take a peak at Grayden's feet/legs so that he can give us some input from a lens that is a little less "traditional". </div>
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Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-26913153899534111812013-01-28T20:45:00.001-05:002013-01-28T20:46:26.430-05:00Thank You!!I wanted to send a big thank you to all of you who have donated to our therapy fund. Not only have we been able to continue working with our amazing ABM practioner, Rene, but Grayden also had an opportunity recently to have ABM lessons from Anat herself and her wonderful team of practitioners! We had an amazing experience and I look forward to sharing more about it soon! I just wanted to say that words will never be enough to thank those of you who have helped us along our journey! <div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXqEC73Bi4fd_-jNYtt3z6T6c-0NcpKEXrZxGjS3eLLbjvK-DA0S-T3geLJCrrSZ9ExB7kp82WII9siWPLRWA0KofLmzGKh8og5a_UzRK7fssBt-7uQOvjKHBJFx3QgKomBrAIFXkTtUA/s640/blogger-image--1625138225.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXqEC73Bi4fd_-jNYtt3z6T6c-0NcpKEXrZxGjS3eLLbjvK-DA0S-T3geLJCrrSZ9ExB7kp82WII9siWPLRWA0KofLmzGKh8og5a_UzRK7fssBt-7uQOvjKHBJFx3QgKomBrAIFXkTtUA/s640/blogger-image--1625138225.jpg" /></a></div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-69475953776552258412012-12-04T21:20:00.001-05:002012-12-04T21:27:08.580-05:00IPad for the Holidays!!<a href="http://gearforgrayden.blogspot.com/">http://gearforgrayden.blogspot.com/</a>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-59685285496156897812012-09-24T22:06:00.001-04:002012-09-24T22:06:38.231-04:00Grayden's Gang at the Stroll N' Roll<div class="separator" style="clear: both; text-align: center;">
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This weekend was the second annual Stroll N' Roll for the West Michigan Spina Bifida Organization. Grayden's Gang was represented by 33 members! Can you believe that? We are constantly amazed at the outpouring of support for our family. WE are forever thankful that Grayden is surrounded by so many amazing people who never cease to show their support for him! Thanks again for all of you who walked and/or donated to our team! The organization as a whole raised over $18,000!! Just INCREDIBLE!! Thanks <a href="http://ourlittlegibblet.blogspot.com/">Leigh</a> and <a href="http://www.babyboybush.blogspot.com/">Emily</a> for putting on another great event!!</div>
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I gave Grayden the option of riding in his stroller or walking with his push toy and he was pretty insistent that he was going to walk. He had so much fun walking with all of his friends and supporters!</div>
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<tr><td class="tr-caption" style="text-align: center;">Grayden's cousin Chase is one of his biggest fans!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This boy makes my heart smile!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Racing to the group photo shoot!</td></tr>
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Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-6619096361149119452012-08-26T21:12:00.000-04:002012-12-23T22:25:54.007-05:002nd Annual West Michigan Stroll N' RollIt is that time of year again and we are gearing up for the 2nd annual Stroll N' Roll to support the <a href="http://wmspinabifida.org/">West Michigan Spina Bifida Organization</a>. We are excited that this year the walk falls on the weekend following Grayden's birthday. So this means, not only will we be celebrating Grayden and all the ways that he continues to redefine Spina Bifida, but we also get to celebrate with all of his buddies and the amazing community that we have become a part of. We would like to invite you to help support us by walking with us on September 22nd or by making a donation to support our team, "Grayden's Gang". You can make a donation by clicking on the link at the top of the blog under "we pay" that will go directly to support Grayden and our team. The money that is raised during this event is used locally to support individuals and their families living with Spina Bifida. It provides opportunities for kids to attend camps, helps pay for therapy expenses, as well as conference experiences for families. I was able to attend the National Spina Bifida Conference this year with the help of a scholarship from the organization, thanks to many of you who donated during our walk last year. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg05tM8EhGNpT-MzidmvgWd9PWUKlmsfL_1RCRbMibF2nFG_Vcfs6_ze-RsOXSTAPUFobzcUOMpDeHk-minj1No6p7GsGe6TW2ucIfnwAV5SBhFgeKP9ECjE2JCVQU3oMhGy1sp-u75Rg4/s1600/family-291.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg05tM8EhGNpT-MzidmvgWd9PWUKlmsfL_1RCRbMibF2nFG_Vcfs6_ze-RsOXSTAPUFobzcUOMpDeHk-minj1No6p7GsGe6TW2ucIfnwAV5SBhFgeKP9ECjE2JCVQU3oMhGy1sp-u75Rg4/s320/family-291.jpg" width="214" yda="true" /></a></div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-33702529124542050392012-07-01T20:44:00.000-04:002012-07-01T20:44:54.152-04:00National Spina Bifida ConferenceI just returned tonight from the National SBA conference in Indianapolis, Indiana. To all of you who donated money to Grayden's Stroll n Roll, I want to thank you again because my trip to this conference was covered by our local SB organization thanks to your generous donations!! <br />
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It was a great opportunity to learn more about the issues related to Spina Bifida and ways that we can prepare and help. I must say, some of the information is hard to hear. I just don't want to go there yet. I tried to only go to the sessions that may impact Grayden's care right now or only 1 to 2 years out, but even that was a little overwhelming. My biggest struggle is all of the information regarding bowel and bladder function. I know that no matter what the case we will deal with it and carry on, but it is just the most difficult information for me to take in and digest. <br />
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Luckily, I have some great Mamas on my team. I seriously do not know what I would do without these ladies. They have become some of my dearest friends. I know it sounds like I am writing a love note, but I can't imagine traveling this journey without them. Thank you mamas for being there for me and just "getting" it. I look forward to our kiddos growing old together!!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzg2Mdd70sgc7RUf5kYyYxE_DbCNz4Hp_DFyYkJKKXJ2iJQ5DlioZr-OpNZYLslLifx7TTQ1pIE5Sw2EHg6ZcZA3_7jJCX4ioGXvk2o-20g5MqidB8p07uNPlG7v5voxteve5NnYWzl5w/s640/blogger-image--235740211.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzg2Mdd70sgc7RUf5kYyYxE_DbCNz4Hp_DFyYkJKKXJ2iJQ5DlioZr-OpNZYLslLifx7TTQ1pIE5Sw2EHg6ZcZA3_7jJCX4ioGXvk2o-20g5MqidB8p07uNPlG7v5voxteve5NnYWzl5w/s640/blogger-image--235740211.jpg" /></a></div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com1tag:blogger.com,1999:blog-3297756891159423767.post-32433837944148146422012-05-01T17:46:00.001-04:002012-05-01T17:46:34.361-04:00Grayden the Book WormGrayden loves books and he loves to be read to. Lately his favorite book is, If You See a Kitten, and anytime he sees it he will ask to read it by saying "cat". I love to listen to him participate and I'm pretty sure I could read it 100 times in a row to him just so I can hear his little voice!<br />
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<span id="goog_1060051445"></span><span id="goog_1060051446"></span>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com0tag:blogger.com,1999:blog-3297756891159423767.post-41863292200014597372012-04-19T21:52:00.002-04:002012-04-19T22:01:17.573-04:00Big Brother ProtectsI hope it is always this way. I have to admit, when we first found out that Gray was a boy, I was a little bummed that I wasn't having a little girl, but I can't tell you how grateful I am for my two boys now. My biggest wish and hope is that they will always look out for each other and be buddies! <br />
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I love these little moments! <br />
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/Rs14qUJyEzQ?feature=player_embedded' frameborder='0'></iframe></div>Grayden has a constant desire to head for the street every time we are outside, and Zander has taken it upon himself to make sure he doesn't go in the road, "because it's not safe".Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com1tag:blogger.com,1999:blog-3297756891159423767.post-40944695988955063902012-04-08T17:03:00.001-04:002012-04-08T17:14:51.221-04:00Easter WeekendWe enjoyed our Easter weekend with our traditional trip to Kinde, to visit The Wileys! We always look so forward to spending the weekend with my Grandma, Aunt Helen, Uncle Kevin, and their daughters, Emily, Trudy, Grace, and Lucy. My mom and Jeff also came, as well as my sister and family. <br />
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This year we started a new tradition and attended an Easter Egg hunt in Port Austin. <br />
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We also always go bowling while we are there and this time Zander was able to join us as he is officially three and old enough. I think he's hooked on our traditional bowling outing! <br />
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We had a great weekend with the family! We are so lucky to have them all in our lives!!!<br />
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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBXdrMmP1yGrVjlG9RAdonAYbb4GfMtEwCTQKztG8nAK51AjcE6BN8LO0mUBeLEfmMSOQpG7OXnnDuGeZuAqCG7Mm4qyUbPVCsTJA1g5dsXwvn1YhRFBa-Gj1L-BXSm7qXwvk8aY0plFI/s640/blogger-image-758381.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBXdrMmP1yGrVjlG9RAdonAYbb4GfMtEwCTQKztG8nAK51AjcE6BN8LO0mUBeLEfmMSOQpG7OXnnDuGeZuAqCG7Mm4qyUbPVCsTJA1g5dsXwvn1YhRFBa-Gj1L-BXSm7qXwvk8aY0plFI/s640/blogger-image-758381.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeB79K021f9Xadt04W0nanvjRSwPUbjpNhkraE63nNGlu9s0YbN1Ayo6UMoFOfDJw4dH1fOkIrlqg9xS8tc7Lq2LnHLNFcYM6p6CewEnAuD0ikzabtlQ7oVrcGJMrp49jUy6je19dEjq0/s640/blogger-image--1301484126.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeB79K021f9Xadt04W0nanvjRSwPUbjpNhkraE63nNGlu9s0YbN1Ayo6UMoFOfDJw4dH1fOkIrlqg9xS8tc7Lq2LnHLNFcYM6p6CewEnAuD0ikzabtlQ7oVrcGJMrp49jUy6je19dEjq0/s640/blogger-image--1301484126.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUKaCLq0bUuUQQR-Qj_WN7HIoF-jX4Qg6rPTbbpeSVWXIZTpmnwst02bjKkTU9trkU-tnZBkGGFv38G2pxdhuxpnT22001Wl9RajC-O5APehBsqe7daAHSHlLxPO4g-2d5LUAFnS6WZhk/s640/blogger-image-430238869.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUKaCLq0bUuUQQR-Qj_WN7HIoF-jX4Qg6rPTbbpeSVWXIZTpmnwst02bjKkTU9trkU-tnZBkGGFv38G2pxdhuxpnT22001Wl9RajC-O5APehBsqe7daAHSHlLxPO4g-2d5LUAFnS6WZhk/s640/blogger-image-430238869.jpg" /></a></div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com1Owosso (null)42.844159 -84.213542tag:blogger.com,1999:blog-3297756891159423767.post-25925223459098312132012-04-04T21:35:00.000-04:002012-04-04T21:35:56.166-04:00Kids Beyond Limits<div style="text-align: center;"><a href="http://www.amazon.com/Kids-Beyond-Limits-Awakening-Transforming/dp/0399537368/ref=sr_1_1?s=books&ie=UTF8&qid=1333588589&sr=1-1"><img alt="Product Details" class="productImage" src="http://ecx.images-amazon.com/images/I/41A-Qq1zLtL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_.jpg" /></a></div><br />
<div style="text-align: center;">This is what I am reading right now!! I have not completed it yet, but I just wanted to share my excitement with all of you about this book and about Anat Baniel's work in general. Have I shared yet, that I am so, so, thankful that my life collided me with Anat's work and that we were given the opportunity to work with an amazing and caring individual who practices her work. </div><div style="text-align: center;"><br />
</div><div style="text-align: center;">If you know someone with special needs or if you are someone who works with individuals with special needs I highly recommend this book (and this work)! </div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I feel like I could write a whole chapter myself on the ways this work has changed my life, but I thought I would share some other amazing blog posts about ABM instead. Go check them out and see what other parents are saying.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><a href="http://sobeautifullymade.blogspot.com/2012/03/kids-beyond-limits.html#comment-form">Gabe's Mom</a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><a href="http://www.outrageousfortune.net/search/label/Anat%20Baniel%20Method">A fellow ABM Mom who I met on facebook</a></div><div style="text-align: center;"><br />
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</div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com2tag:blogger.com,1999:blog-3297756891159423767.post-38728614136276847582012-03-21T21:40:00.000-04:002012-03-21T21:40:51.600-04:00A Day at the BeachI have so much to update you on, but I wanted to share pictures and videos from our afternoon at the beach. It has been CRAZY warm here in Michigan for March. We went to the beach in Holland as soon as we got out of work. We had such a great time. Both boys love the beach, but they could not be more opposite in the way that they play. Zander loves to stay clean. He is a "neat" sand player (if that is possible). Grayden is the COMPLETE opposite, the MESSIER the better. Tonight at the beach he was cracking us up. He kept crawling backwards, like he was going down the steps, to get himself into the water. He loved it!! He even showed off his bear crawling skills for the camera. What a great day at the beach!!<br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2IBfJa5EQW4sNr4UCOEVrr7EqQIg9KvrazX0A6-lBDDV-zUwWbJi-LQC5jyIYp3V661xKpsVXAp0H04IR4bCg7mpOMhq1uWIhOkUtZkQ_rtbmJYBkJKLdCXO308w_RCN0eExUgE1ZfWQ/s1600/IMG_0770.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img aea="true" border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2IBfJa5EQW4sNr4UCOEVrr7EqQIg9KvrazX0A6-lBDDV-zUwWbJi-LQC5jyIYp3V661xKpsVXAp0H04IR4bCg7mpOMhq1uWIhOkUtZkQ_rtbmJYBkJKLdCXO308w_RCN0eExUgE1ZfWQ/s320/IMG_0770.JPG" width="320" /></a></div><br />
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Lastly, I will leave you with a little sneak peak of what Grayden has been up to lately! Blog post to follow!!<br />
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</div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com1tag:blogger.com,1999:blog-3297756891159423767.post-6591193847301939722012-02-10T20:10:00.000-05:002012-02-10T20:10:57.295-05:00Beginning StepsThis boy is determined! Today we were playing and I looked over and Grayden was standing next to one of his ride on toys pushing it! He was taking little side steps out of the bedroom! I very quickly went and got my phone so I could capture it on video and share it with all of you! What a great way to end a long and busy week!<br />
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/B4ps5UggtZk?feature=player_embedded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/EzxXgdQXmho?feature=player_embedded' frameborder='0'></iframe></div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com2tag:blogger.com,1999:blog-3297756891159423767.post-71261192301431114292012-01-29T19:40:00.000-05:002012-01-29T19:40:55.367-05:00Cruising!Grayden started cruising along the furniture yesterday! He is obviously brand new at this so still a little wobbly and slow, but I wanted to share!<br />
<div class="separator" style="clear: both; text-align: center;"><object width="320" height="266" 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="http://i.ytimg.com/vi/Zd_2Y8BzCHE/0.jpg"><param name="movie" value="http://www.youtube.com/v/Zd_2Y8BzCHE?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" /><param name="bgcolor" value="#FFFFFF" /><embed width="320" height="266" src="http://www.youtube.com/v/Zd_2Y8BzCHE?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" type="application/x-shockwave-flash"></embed></object></div><div class="separator" style="clear: both; text-align: center;">Sorry the video is so long. Austin is out of town and I forgot how to edit it!</div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com2tag:blogger.com,1999:blog-3297756891159423767.post-72679649327194280122012-01-26T21:12:00.000-05:002012-01-26T21:12:15.157-05:00ShuntiversaryOne year! To say that I have not thought about the shunt in the last year would be a HUGE lie. In fact I have thought about it a TON in the last year. It is probably one of the biggest things that I have beaten myself up about. Throughout the last year, I thought about that darn thing so often. I wished that we would have taken Grayden to Boston to have a different procedure performed (<a href="http://www.childrenshospital.org/az/Site1116/mainpageS1116P4.html">ETV</a>), which has a decreased chance of failing at some time in the future. It has been very hard for me to get over the fact that I did not push harder and explore further and ask more questions. As a mom over the past year I have had feelings as though I somehow failed Grayden, and that I didn't do enough. I trusted what I was told by our "small" town Grand Rapids neurosurgeon. <br />
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But you know what, with the help of my good friends in my mommy group who I have vented to over and over again (thanks ladies) I have come to realize many things recently. I did what I thought was best at the time based on the information I was given. That little tube saved my little guys life. I think that I can finally say, after a year that I have finally come to terms with it. I am not going to focus my attention on it anymore. Who knows, maybe Grayden will be one of the lucky ones and have few issues with it. You just never know. And what I can say is that I am thankful that the shunt was placed without incidence and that it was an available option for treatment of Grayden's hydrocephalus. 50 years ago we would not have had that option. My great Aunt did not have that option when her child was born with Spina Bifida. So I will forever be appreciative that there are medical options available and that the medical community is ever evolving. <br />
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Today we celebrated! We celebrated because with the help of the shunt, Grayden is doing amazingly well and for that we will forever be thankfull!!!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwCXakvGaRIa07GJyMvQVTHcs0_rIP3-x6fRx0NeKyVBr6sb0wooGNSM1Lx14jYeFdi1-o2PxA_5hrTubk_Xjst1xVYenooeA-ETiL3p8JVp4s-YZsYf8_7whhjhGp4XRwzakFLqKggo0/s1600/P1280176.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" gda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwCXakvGaRIa07GJyMvQVTHcs0_rIP3-x6fRx0NeKyVBr6sb0wooGNSM1Lx14jYeFdi1-o2PxA_5hrTubk_Xjst1xVYenooeA-ETiL3p8JVp4s-YZsYf8_7whhjhGp4XRwzakFLqKggo0/s320/P1280176.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">Last year, day after surgery</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4abMLtQktqETQ3cMAIGge1GhEo02WCDkD_XvwonS4ujvMYyAg0GDhoLiXm8MqtHIsLVlRXlZWmfaeAmgX8qu5lbl9D1MfRD_t6XYmsHm2Wrw8AUO3R8RjozLhSp_t5ZUUkkPJA8rYGdg/s1600/IMG_0530.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" gda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4abMLtQktqETQ3cMAIGge1GhEo02WCDkD_XvwonS4ujvMYyAg0GDhoLiXm8MqtHIsLVlRXlZWmfaeAmgX8qu5lbl9D1MfRD_t6XYmsHm2Wrw8AUO3R8RjozLhSp_t5ZUUkkPJA8rYGdg/s320/IMG_0530.JPG" width="320" /></a></div><div align="center">Today as we celebrated with cupcakes!!</div><div align="center"><br />
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</div>Kellyhttp://www.blogger.com/profile/09736312179746535843noreply@blogger.com4