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One, Two, SixEthan's journey with Doose Syndrome.
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Ethan's journey with Doose Syndrome.
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One, Two, Six | one-two-six.blogspot.com Reviews
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Ethan's journey with Doose Syndrome.
one-two-six.blogspot.com
One, Two, Six: February 2012
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One, Two, Six. Ethan's journey with Doose Syndrome. Saturday, February 4, 2012. Back to Square One. They were so sweet, they turned on the lights for him:). Waiting to go up. This was news to us. Sure wish they would share this info with us. Even with a brand new seizure they still said they knew all they needed and he wouldn't be getting an EEG even though in the last month his seizures have increased from a few a month to up to a hundred or more a day. Still doesn't phase him! Subscribe to: Posts (Atom).
One, Two, Six: March 2012
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One, Two, Six. Ethan's journey with Doose Syndrome. Friday, March 23, 2012. It's been quite a while since I've updated things here. Once we got home and settled from the last few hospital visits we upped his clobazam up to higher dose, and slowly but surely Ethan seizures started to go away! The drug is working! Going to school and playing with his friends, and of course bickering with his little sister:) Two big seizures a month is no big deal when you've become accustomed to 100 a day! We got up to the...
One, Two, Six: May 2012
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One, Two, Six. Ethan's journey with Doose Syndrome. Monday, May 28, 2012. The Ups and Downs of Doose. It leaves him still with no physical reasons for his seizures, and no obvious reasons for his central sleep apnea. As has been the case the whole time, we're left with no reason for this all. Waking up after the MRI. Snuggling with his Rhino! Our big boy also turned 5 at the end of April! I can't believe he's already 5, who knows where the time goes! My yearly picture of him in bed in the morning! That's...
One, Two, Six: April 2011
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One, Two, Six. Ethan's journey with Doose Syndrome. Thursday, April 28, 2011. Yesterday my big boy turned 4! It snuck up on us all. With the new diet and training a new puppy our lives have just been crazy! His birthday morning pic, have one every year! This year his bed is in our room. He drove to the other side of town to pick it up and they couldn't find them anywhere! Why there is snow at the end of April I'll never understand. He was so happy and excited. I have to add, earlier in the week I let him...
One, Two, Six: May 2011
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One, Two, Six. Ethan's journey with Doose Syndrome. Saturday, May 28, 2011. Ethan has been doing amazingly. With the exception of one tiny drop seizure, we haven't seen anything out of him in nearly 3 weeks, it has been amazing! Taylor doesn't have much park experience because we have been so afraid to take Ethan, so I got them there and pretty much let Ethan go and played closer to the ground with Taylor. It's so wonderful to see him being to free and normal! Saturday, May 14, 2011. It's amazing, but tr...
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ourjourneywithdoose.blogspot.com
Our Journey With Doose Syndrome: 912
http://ourjourneywithdoose.blogspot.com/2014/07/912.html
Sunday, July 6, 2014. That's how many days it has been since his last seizure. Two and a half years. Things were at their worst. Then and even though we rejoiced about a "no helmet day". In my heart, I was so worried that things would only spiral downhill again. That's the part that still always amazes me. God can see further down the road than we can, but trusting Him is not always the easiest for me. I'm thankful for His grace. I'm also reminded that the fight is not over yet for too many kids. Ben was...
ourjourneywithdoose.blogspot.com
Our Journey With Doose Syndrome: Team Ben
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We are blessed wtih so many people supporting us! We are encouraged each time we receive a note or a message! November 26, 2012 at 7:33 AM. Great pictures and a great story. Our son is diagnosed with doose since April this year. We are on the diet since 6 weeks Keppra Orfiril Petnidan. He isn´t seizures free yesterday there were 4 Grand mal seizures. But we are hopeful. someday things will change and our son will come back. God bless you! Subscribe to: Posts (Atom). Ben's Story - how it all began. Second...
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Our Journey With Doose Syndrome: Today is a no-helmet day!
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Saturday, January 7, 2012. Today is a no-helmet day! January 7, 2012 at 4:27 PM. January 7, 2012 at 7:38 PM. January 7, 2012 at 8:04 PM. Thankful for every good thing, every bit of respite; thankful for Gods goodness and provision. April 30, 2012 at 4:16 PM. WOW YOU HAVE A AMAZING LITTLE BOY! Subscribe to: Post Comments (Atom). Ben was diagnosed with Myoclonic Astatic Epilepsy of Doose (also referred to as Doose Syndrome) in August of 2011. This blog documents our experiences with this syndrome. Its the ...
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Our Journey With Doose Syndrome: June 2014
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Monday, June 30, 2014. How being a parent is helping me become a better teacher. Working with children has been my passion for my entire life. As I’ve been reflecting on this past school year, I’ve realized that parenting Ben has given me a fresh perspective on the classroom experience. We have been beyond pleased with Ben’s teachers and his school. In fact, these things have been modeled all year by his teachers. This list is NOT a reflection on his. It’s a reflection on my own. I’m excited about. Kids ...
ourjourneywithdoose.blogspot.com
Our Journey With Doose Syndrome: how being a parent is helping me become a better teacher...
http://ourjourneywithdoose.blogspot.com/2014/06/how-being-parent-is-helping-me-become.html
Monday, June 30, 2014. How being a parent is helping me become a better teacher. Working with children has been my passion for my entire life. As I’ve been reflecting on this past school year, I’ve realized that parenting Ben has given me a fresh perspective on the classroom experience. We have been beyond pleased with Ben’s teachers and his school. In fact, these things have been modeled all year by his teachers. This list is NOT a reflection on his. It’s a reflection on my own. I’m excited about. Kids ...
ourjourneywithdoose.blogspot.com
Our Journey With Doose Syndrome: Second Grade looks good to me!
http://ourjourneywithdoose.blogspot.com/2014/08/second-grade-looks-good-to-me.html
Sunday, August 24, 2014. Second Grade looks good to me! Tomorrow is the big day! First day of school! I think he's a little excited. He woke up telling us, "Don't say anything about what tomorrow is." :) But as the day has gone on, I think he's excited to see his friends again. I just know it's going to be a great year! Who said he could grow up? They are so big! Let's hope they are this excited after the first week. :). Thanks Angie for the pics! Subscribe to: Post Comments (Atom). Rest secure in Him.
ourjourneywithdoose.blogspot.com
Our Journey With Doose Syndrome: What does Doose look like? {video footage}
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What does Doose look like? There are many types of seizures. Before we started on this journey, I was only aware of two. I watched a classmate have a 'grand mal' seizure in high school. I had heard that sometimes when people appear to be daydreaming, it could be a seizure (absence seizures). Ben has 3 different types of seizures. Used to be referred to as 'grand mal'; lots of convulsions; most often he completely stops breathing; usually sleeps for at least an hour after each one. The promise we cling to.
ourjourneywithdoose.blogspot.com
Our Journey With Doose Syndrome: Understanding is different than fixing.
http://ourjourneywithdoose.blogspot.com/2014/06/understanding-is-different-than-fixing.html
Thursday, June 19, 2014. Understanding is different than fixing. First grade has taught Ben some important lessons. But we have learned a lot as well. We went into first grade with some big fears. Will he catch up? Will he grow to love learning? Will he make friends? Will being pulled out for speech, occupational therapy, and resource be too much for him? In the end, it's been a tremendous year of growth for him. He's made a years worth of progress and more in some areas! But it hasn't been easy. Love Ca...
ourjourneywithdoose.blogspot.com
Our Journey With Doose Syndrome: Lemonade Stand - Saturday, July 26th
http://ourjourneywithdoose.blogspot.com/2014/07/lemonade-stand-saturday-july-26th.html
Saturday, July 19, 2014. Lemonade Stand - Saturday, July 26th. We have changed the date of the lemonade stand from Friday to Saturday, July 26th. According to Livys Hope, there are only 6 states left to host a lemonade stand. Do you know anyone living in Delaware, New Mexico, North Dakota, Oregon, or Tennessee? Maybe they would consider helping out and turning the country purple for epilepsy awareness. Go to www.livyshope.com to find out more! Subscribe to: Post Comments (Atom). What does Doose look like?
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One, Two, Six
One, Two, Six. Ethan's journey with Doose Syndrome. Thursday, September 19, 2013. A Year with Two Brains. And what a year it's been. I want to start from the beginning and tell Ethan's story, ending with where we are now. It is quite literally an unbelievable story! Ethan's story starts not unlike most others. He was born just slightly late, fairly easy labor. His head was so big he had bruising, lol! I even took the kids out to Arizona to visit my sister and brother-in-law shortly after starting school&...
One, Two... Smile!!!
One, Two. Smile! Por un trozo de tu pastel preferido, una foto con los que más quieres, una puesta de sol, un beso de buenos días, una manualidad, el final de un libro, un deseo cumplido.o por cumplir! 161;Se me ocurren tantos motivos por los que estar contenta! 191;Y a ti? A piece of your favourite cake, a picture with those you heart, a sunset, a good morning kiss, your handmade crafts, the end of a book, a wish which came true.and those which will! So many reasons to be happy! 13 oct. 2012. Una de las...
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Friday, March 11, 2011. Japan was hit with tsunami just now ):. And its going to spread all around the world. So many countries are predicted to get hit too. Malaysia might get hit by it too. My daddy is in china and my sister in perak. So far aparttttttt D:. Hope everyone is okay. Friday, March 4, 2011. I feel so stressed out now omg. I dont even know why i'm even here ):. Exams are next weeeeeeeeeeeeeeeeeeeeek! I've only started on history, as usual -.-. I cant seem to cope with anything else.
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