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8/13/08-Wahoo! We did it!! Dylan met his goal! How very exciting for him! He says "Thanks everyone!" and we hope to see many of you at the Stroll! Gotta run, making t-shirts for our team!
8/7/08-HAPPY BIRTHDAY AMANDA!!
It has been brought to my attention that there is no mention of Dylan's dad or his dads family on our webpage. I apologize. The Stroll and Epilepsy have become a real passion for me so when I write my thoughts down on Dylan's webpage it is only intended to share those thoughts and feelings, not disregard others thoughts and feelings. I spend much of my spare time researching Epilepsy and being actively involved with Epilepsy Foundation MN so that Dylan can be a part of something that has changed his life forever. Please accept my deepest apologies if I've offended or hurt you by not mentioning you as this was not my intention in the least.
Because my feelings are based directly on our day to day lives in our home it is easy for me to express that emotion and share it with others. In an effort to right my wrong I will do my best to be more proactive in including others thoughts and feelings.
Dylan's dad Kevin is an active participant in Dylan's care and well being. Dylan means the world to him and Dylan's Epilepsy has also had a huge impact on his life as well as his new families life. Kevin's parents, Dylan's Papa & grandma as well as Auntie Nissy, Uncle Dennis and all his step siblings and cousins have been very supportive, understanding and loving about Dylan's daily struggles with his diagnosis. They have felt the same range of emotion as we have and have always cared deeply about how Dylan is doing and how they can best meet his needs and take care of him with as much love and support as everyone else in his life. Dylan's dad has known the fear we all know when finding out that your child has been diagnosed with Epilepsy and the reality of not knowing why is heart wrenching to him as well. There is no doubt that Dylan's dad and the rest of his family loves Dylan with all of their hearts and if my writing's on Dylan's webpage have not reflected that then, again, I apologize. I will make more of an effort to share their input as well.
Dylan's dad and all of his family will be joining us for the stroll and Dylan looks forward to them being a part of something he finds so important. It will be great to have them there supporting him and his efforts.
8/5/08-It's almost Stroll time! Dylan is so excited! I have to share a great story. Today I went to a nail salon to get my nails done and Dylan wanted to come along and hang out. The person doing my nails started talking with Dylan and before I long they are in a conversation about Epilepsy. Dylan is telling Brian all about his seizures, his medicine, the stroll, everything. I was so proud of him! Brians niece has Epilepsy and her doctors are still trying to find a medication that will help control them so he was very interested in Dylans story. Dylan took out his pills and showed him what he is taking and how important it is for him to take them on time. I'm sharing because I was SO proud of him! What a great kid, trying to help someone else, telling Brian that his niece should take the same medicine as him so she could feel better and not have seizures. He's so kind and caring. Brian even marked his calendar for the Stroll as he was so impressed with Dylan that he wants to be a part of what Dylan and everyone else is trying to accomplish! Welcome to our team Brian!
7/31/08-Well Hometown Pride Days was fantastic! We raised over $500 dollars. Dylan had a great time. We had an older gentleman from the area that stopped by our booth and hand us a $100 dollar bill, I told him I didn't think I had change for that! He said no change necessary, he was donating to a good cause...Dylan was awestruck as was I! I would mention his name but I didn't get his permission to do so, wish I had because how generous! It was a fabulous feeling. I asked him if he had Epilepsy or knew someone that did but he didn't, he is a lawyer that has worked with clients with Epilepsy and thought it was a great cause to donate to. So if you are out there reading Dylan webpage...thank you from all of us.
As for our book...what started out as a story written by Dylan and mom has turned into a family affair. All of his siblings and stepdad too would like to share their feelings and outlook on this whole experience so we are back to the drawing board but I believe this will be such a wonderful opportunity for the whole family, how could I say no? Dylan thinks it's so cool that everyone cares so much that they wish to share their side of the story. Watch for updates-you will love the story and I hope that it will touch many hearts and lives the way it is intended to.
Only two weeks until the Stroll!! Hope to see many there.
7/22/08-Three days until Home Town Pride...we are so not ready! It's been pretty hectic this summer with all the activities going on but this week everything will be coming to a close. So maybe we'll be able to take a deep breath and sip some cool drinks and just say ahhhh...isn't life wonderful!
Dylan is all fired up about his booth at Home Town Pride this weekend...it should be great. We have the rough draft of our book complete and are working on the illustrations. What a fabulous feeling writing a book together. I am so lucky that this little guy of mine has such a vivid imagination. And because he asks at least a million questions a day, he pretty much knows everything! We are waiting to hear from our new friend that will be helping us get it published. It's great because it's a short story that we feel will be enjoyed by children and adults alike. We'll keep you posted on the progress!
Come visit us at Home Town Pride! We look forward to seeing old friends and making new ones all weekend long.
7/15/08-Hello & thanks for visiting Dylans fundraising page! Summer seems to be flying by. Dylan goes to summer school in the morning, Science Camp in the afternoons and baseball twice a week! As soon as summer school ends then football camp starts! He's really enjoying the new things he's trying this year and finally making some friends.
We are very excited that Joe from Regent Broadcasting will be interviewing us about how Epilepsy has effected Dylan's life and the peolpe that care about him as well. We're a little nervous but it has been a goal of ours to spread the word ever since Dylan was diagnosed so what a fantastic opportunity Joe is offering us!
We're also happy to let everyone know that we'll have a Jimmy's Pizza booth at Home Town Pride Days here in Cold Spring on July 25th & 26th. Jimmy's has been kind enough to supply everything we'll need to sell pizza by the slice and ALL of the proceeds will be donated to Dylan's fundraiser! WOW!! Plus we're going to do face painting & nail decorating-very fun!
And more than anything we are happy to announce that we are almost done with our book. Yes! Dylan and I are writing a book about his journey with Epilepsy and it's coming along great. It's a first for both of us so we are anxious to get it done and share it with our new friend Lisa. She is also a mother of a child with Epilepsy and a publisher as well! She has been kind enough to offer her help so that we can get our book published! We'll keep you posted on all the details.
Dylan would like everyone to know that he thinks it's so cool that people visit his webpage and cares enough to learn about Epilepsy and how it has been such a huge part of his life now. He says "thanks everyone!"
6/16/08-Thanks for visiting Dylan's fundraising page! We are working on Amber's graduation celebration so we haven't done much fundraising but we're still trying to spread the word and will be working much harder after this week. Dylan goes to summer school in the morning, science camp in the afternoon and Little League 2 nights a week so he's been very busy! He's doing great. hasn't had a seizure for a few months now so we are hopefully that the meds are at a proper dose.
He's learning more and more about Epilepsy everyday. He's not at all embarressed to share his story with others and in fact has realized the importance of making sure that the people around him know what to do in case he has a seizure.
Dylan keeps asking why he has Epilepsy and why there is no cure. I've asked myself the same questions a million times! My only answer to him is that there is no answer but that we won't give up looking for one! He is having a tough time accepting that answer. He hates taking all of his meds and if will alone could stop his seizures, they would stop!
We are looking forward to the Stroll in August and are very hopeful that we will hear from Kat at KCLD about the possibility that she could join us! Dylan would be thrilled! He thought she was one cool chick when he met her at the wedding expo at the beginning of the year so what a treat that would be! So if your reading this Kat...we'd love to hear from you:)
I'll be posting more pictures soon! Also if you like Tastefully Simple please let me know. I'm offering a 10% discount to anyone that orders not until the Stroll and I'm donating another 10% to Dylan's fundraiser! So if you love great food and want to support Dylan at the same time here's your chance!
4/30/08-If you are reading Dylan's story and doctor at the St Cloud Neurolgy Clinic I have important news for you. They are closing! The only pediatric Neurologist in St Cloud is at this clinic and he will be leaving the state when they close in June. I wanted to make sure I got the word out because at this time they are not actively informing their patients that they are closing their doors. I did get a list from Lori B from Epilepsy Foundation MN of doctors in MN that may be taking patients. I'll be happy to forward this list to you if you'd like or I'm sure that Lori would be happy to as well. I just felt that it was important to everyone to have this information, especially if you'll be needing your seizure meds refilled soon!
I can't believe we are already planning for the 2008 Stroll For Epilepsy! I'm so excited!! Last year was just amazing. The feeling of accomplishment that Dylan and our whole team felt was just overwhelming. Not only was our team fabulous last year but everyone that supported us made it all the more rewarding.
If you are new to Dylan's story I will try to bring you up to date and continue to add thoughts and information on his page until we take our Stroll!
Dylan was diagnosed with Epilepsy at the beginning of 2005, just before his fifth birthday. If you know a child with this disorder you know that it is devastating to see that child having a seizure. Words cannot express the fear that he and everyone around him feels when he has a seizure. We're not afraid of the seizure itself...just not knowing why it is happening or if it will be like the seizures before and end with him being okay. Along with his Epilepsy he's been diagnosed with ADHD so we don't know if the ADHD or his Epilepsy is making him struggle academically. Whatever the reason it continues to be an up hill battle for Dylan to learn the basics and move forward with his peers, which in turn causes social issues. He has also developed a tick, where he blinks constantly. Again with no known cause or cure but with lasting impact on his academic and social growth. I think right now the most painful thing to watch him go through is the social isolation that comes with all of the things he is struggling with. We all know how cruel children can be to each other. To see your child in so much pain is heart wrenching.
Since being diagnosed Dylan has had nine seizures that we have actually witnessed. He made it 13 months seizure free at one point but since then he can't get past that 8 month mark! Very hard for him! After his last seizure about mid March of 2008, which was far worse than any of his others, we discovered that he is having mini seizures through out his day and night. Even though his meds are controlling the bigger ones, they are now trying to come up with a plan to control the mini ones. So on any given day Dylan may experience up to 100 mini seizures!
This is life changing for Dylan. Even the smallest things seem monumental now. How can a child learn when his brain is checking out over and over through out his day? The mini seizure discovery is now proof that his Epilepsy is effecting him academically! Now we have to find a way to stop them so that school may become a bit easier for him.
So that's where Dylan is at since the last Stroll. Honestly I could go on and on about Dylan and his journey with Epilepsy. In fact before we get to Stroll I'm sure I will do just that right here on his website! I'm so proud of him and my love for him know's no limits. He is one tough kid let me tell you. Anyone that has to live with this disorder know's what you must endure, and what the future may or may not hold for them, which can sometimes be disheartening.
I encourage anyone that reads Dylan's story to support the Epilepsy Foundation in any way that you can. Maybe you can't donate money, but there are other ways. Stroll with us! Or donate items you can no longer use. They even pick it up at your house!
One last thought before I go: I used to be so scared, every minute of every day! Seriously I was terrified everytime he wasn't right where I could see him. There are so many things that could happen in such a short amount of time if he has a seizure and someone is not with him. At first I slept right next to him, with my hand on his back, just because I thought if he had a seizure I'd wake up and be able to take care of him. Mostly I didn't sleep, just worried all night. And then there are the days when he's not home with me where I can watch him like a hawk...don't even get me started on how rough those days can be! But I've finally gotten to a point where I can say...you know what? I am terrified! I worry constantly!
But I offer it up to a higher power, all that fear and anxiety because it is out of my control. Now I just love him, love him with every breath that I take. I try to protect him from as much as I can and help him grow from what I can't. He's strong, and kind, funny & sweet, he's just a little boy like other little boys that want to be accepted and loved for who they are and what they can give the world. Sometimes we forget to look deeper and see what's inside a person instead of what is on the surface. Please, take the time to see, see the beauty and worthiness of everyone around you. We all deserve it. Our kids deserve it and need us to teach it!
Today Dylan is doing whatever he can to spread the word about Epilepsy and support all of the other people living with the disorder. Tomorrow he may change the world!!
Here is a link to an amazing video that someone shared with me and I wanted to share with you. It's not about Epilepsy, it's about life: http://uk.youtube.com/watch?v=LfeXxkbgCVE
There is strength in knowledge. Dylan is one of many! Please join us for the Stroll if you can.
You will feel so amazing for being a part of it.
Thank you all so much for supporting Dylan and being a part of his life! He is blessed with wonderful family & friends!
Because we hope that many new people will be visiting Dylans website I decided to include his story from last years website. It really tells his story in detail:
Early one morning shortly before Dylan’s 5th birthday he snuggled up next to me on the couch. I thought he’d fallen back to sleep but his eyes were open so I whispered to him that he should try and go back to sleep. Instead of the usual sleepy little smile he typically gives me, he didn’t respond, so I asked him what was wrong…his eyes were wide open and I noticed that his eyes were looking off to the left, his head was turned to the left and he was making smacking sounds with his lips almost like he was panting? He seemed completely unresponsive, when I picked him up to try and figure out what was going on I could not get him to focus on me or turn his head my way. He was completely out of it! Because he had wet himself (which he hadn’t done for years) I attempted to stand him up so I could help him change out of his wet pj’s. He almost fell over! He just wasn’t there at all! I called 911.
While waiting for help Dylan lost consciousness. I remembered thinking I should lay him down and make sure his airway was clear but I just could not let him go. Our home was quickly filled with the Cold Spring rescue squad and/or fireman. I don’t really know who they all were but there were a lot of them and they were all wonderful. Not only did they have to help Dylan, they had to help the rest of his family also. Words cannot describe the fear of the unknown that a parent and sibling feel watching someone they love go through this. In less than ½ an hour I had held my sleepy little boy in my arms to watching half a dozen people work on him in the middle of my living room floor. It was heartbreaking!
After several tests and doctor visits Dylan was diagnosed with Epilepsy. Now we knew what was going on and could start treatment and make him better…little did I know! What? No cure? But how can that be? Nope, no cure. No little pill that makes it all better. In fact Dylan has seizures for no known reason. Unexplained seizure disorder is the term I’ve heard used by doctors. They said he may never have more than the one seizure but we quickly learned that would not be the case.
He has had 6-7 seizures since the first one. Many 911 calls. Thank goodness Cold Spring rescue has such amazing people on its team. They’ve shown patience and understanding through it all. They’ve helped us know what to watch for and how to handle his seizures.
Dylan has Complex Partial Seizures so sometimes it’s more difficult to recognize a seizure because they usually start in a small area of the temporal lobe or frontal lobe of the brain and quickly involve other areas of the brain that affect alertness and awareness. So even though his eyes are open and he may make movements that seem to have a purpose, in reality "nobody's home." Other people may think he is just daydreaming or ignoring them. We now know what to watch for but his new Neurologist is still wondering if he is having small seizures through out the day which may be one of the reason’s he’s having trouble in school. Because the seizure can wipe out memories of events just before or after it, memory lapses can be a problem.
Dylan has had his seizures under control for about six months now with Trileptal. Before that he had been seizure free for a little over a year using the same medication before he experienced another seizure. The doctors think he “grew out” of his medication so they adjusted his dose and since then he hasn’t had another.
I’m writing Dylan’s story because he’s a beautiful little boy with a disorder that I knew NOTHING about until it affected my family. You just don’t hear about Epilepsy. I want to learn everything I can possibly learn about it so I can help my son as well as others affected by it. Epilepsy may be a part of the rest of Dylan’s life but we refuse to let it slow us down. It has actually opened our eyes to how precious each and every day is and that Dylan is a gift that GOD has entrusted me with, I intend to help him live every day to the fullest and find joy in all that life throws our way.
So that’s a snippet of Dylan’s story. I’m so proud of him and love him so much I could write a novel and still not come to “the end”. But Epilepsy is a part of who he is and who we all are because of it. We love with all our hearts, live everyday to the fullest and continue to educate ourselves about Epilepsy every chance we get. With the help of The Epilepsy Foundation
Minnesota we hope to support all those affected by Epilepsy and encourage everyone to do the same!
Thank you for visiting Dylan's Personal Fundraising Page.
Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!
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