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Uncategorized | Addie and Aicardi
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Skip to primary content. Skip to secondary content. What is Aicardi Syndrome? June 5, 2013. It’s been awhile since our last post and for that I am sorry. There are so many other things that take up our time on a daily, weekly, and monthly basis that sometimes its choosing to update the blog or fall asleep and we are very fond of the latter! What does it mean? We don’t know. February 25, 2013. A few days ago my wife took Adalyn to Chicago for a video eeg. This test was to tell us about brain activity ...
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Logan's Story: October 2014
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Wednesday, October 22, 2014. Today we celebrated Logan's 4th birthday. It is Wednesday so our celebration was small (Joel, Lauren, myself, and Logan's nurse Cyndy). Lauren bought Logan a big writing tablet that he can play with. He does well with arts and crafts with our help and Lauren really enjoys showing him how to do it. We spent the last part of the evening talking to family via FaceTime. It is always so fun to be able to share these moments over a video feed! Looking back it was pretty dramatic!
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Logan's Story: Hello Sping and long awaited updates
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Wednesday, April 29, 2015. Hello Sping and long awaited updates. Hello everyone. I am such a bad blogger! Logan has generalized seizures up to 30 times a day and a couple grand mal seizures a day. We have done many medication adjustments and have recently added a third medication. Hoping this one is the trick. It is so distressing to see him experience seizures all throughout the day. I don't know and we will never know. August 15, 2016 at 7:43 PM. This is a really powerful article on the difficulties an...
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Logan's Story: Where have we been
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Monday, June 22, 2015. Where have we been. Hello again blog world! I've been away for too long. Our busy lives have taken over! Some of you who don't follow Logan's "Team Logan" Facebook page have missed out on periodic updates. I find it much easier for short updates and photos. Click this link to take a peak and while you are there, like his page! Https:/ www.facebook.com/teamlogan2013. So what's going on with Logan you may ask.where do I begin? I refuse to let him watch it. He's a little pork chop!
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Logan's Story: August 2014
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Sunday, August 31, 2014. Logans Make a Wish celebration photos. Logan had his Make a Wish celebration in July. It was such a blast! Our wish granters Barb and Donna planned a blowout bash. It was carnival themed and had everything we asked for and more. It was beyond what we would have ever expected. 100 of our family and friends attended to help Logan party and I think everyone had a great time. The pictures tell it all. Thank you to all the volunteers and vendors that made Logan's special day happen:.
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Logan's Story: September 2014
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Thursday, September 25, 2014. I heard from the metabolic specialist who saw Logan a handful of months ago. He did a urine test that came back normal and has further discussed Logan's case with the genetics team at Children's. Apparently the Exome sequencing done a long time ago showed that Logan and I both have a genetic mutation on the HUWE1 gene. Apparently this is an X-linked issue. I have never claimed to be an expert on this topic, I only write to the best of my knowledge! He may not speak but the s...
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Logan's Story: May 2014
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Wednesday, May 28, 2014. It is heart wrenching to see him going through this. He seems miserable and we are miserable and exhausted. It is so difficult to console him and at times is impossible. We are just about at our wits end and have run out of ideas. It is so easy to let the day to day tasks get in the way of pursuing things that matter most. Time just gets away and before you know it, it's too late. I don't know how to get past these feelings and start doing meaningful things. It is har...Well, it'...
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Logan's Story: March 2015
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Monday, March 2, 2015. Today we had a day off from school. It was warm enough to venture out so Logan, Lauren, Cora, and I went to the Maple Maze. It's at the community center and is a big indoor jungle gym. Of course Lauren was in heaven from the start! We scoped out the place to see what Logan could do. At first it wasn't very promising but then we figured out how to make it work for him. She was so interested in him and followed around Lauren and played with her. All in all it was a good day! Logan is...
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February | 2013 | Addie and Aicardi
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Skip to primary content. Skip to secondary content. What is Aicardi Syndrome? Monthly Archives: February 2013. What does it mean? We don’t know. February 25, 2013. This is actually great news as this has been our biggest battle yet. The second piece of news amazed the neurologist to the point that she kept telling Liz that she is amazed. Addie’s brain waves or the background was that of a normal functioning child! What does this all mean? February 21, 2013. What do you do? Addie and Aicardi- Official Blog.
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