This Star Won't Go Out

Esther is having a great time this weekend as she continues to attend the LeakyCon conference here in Boston. It began Thursday and continues through Sunday. She has absolutely loved going and meeting in person many of her online friends and heroes such as writer John Green. Big sister Abby has trailed along and has fit right in but only after Estee’s extensive coaching. “It’s Griffendorf, not Huff in Puff!’ (no dad, no. It’s Hufflepuff, not Huffinpuff, and it’s Gryffindor, not Griffendorf. bahaha) Say, “Oh, Ministry of Magic is my favorite.” Abby is probably a closeted nerdfighter anyway if the fun she’s been having is any proof. Angie will help lug the oxygen around today and she’ll fit right in as she at least knows what language to use. Mom and Dad are not quite sure what the appeal is, but Estee is in heaven and that’s alright with us. Check out the www.leakycon.com web site for a better sense of things. Also, Esther’s Facebook has current photos.


In other really good news, after nearly a year of going in to the clinic in Boston once a week, Esther was recently upgraded to bi-weekly visits! Kind of like moving from coach to first class with more leg room and free peanuts.


All for now,


Wayne



At Leaky with Alex Day!

BOSTON, MASSACHUSETTS, 2009





Friday, July 3, 2009 11:11 PM, CDT


Hellooo everyone. This is Esther, and I figured I’d update, and stuff, because it’s been quite a while since that last happened.


Nothing very significant happened in June, which I suppose is both good and boring news. I started a better schedule of home physical therapy (every Monday), and I’m still going to Jimmy Fund every other Thursday. Medicine is the same and the next scans are this Monday, July 6, so we’ll tell you how that goes.


A week or two ago I went to a concert nearby with my sister, Angie, and that was awesome. We danced and I was exhausted the next day, but dude, it was so worth it. I have these two “liquid” oxygen tanks, and they last about 4 hours each, so I take those with me whenever I go out. If we ever go somewhere and I need more than 8 hours of oxygen, there’s also a few big tanks that hold 3 hours worth.


Oh, this past week my mom and dad (or you could say Wayne and Lori) went to an island for a belated anniversary trip. Abby and Angie were in charge of my medicine/keeping Abe and Graham occupied, and I must say they did a brilliant job. We didn’t really do anything major, but we made coffee cake, and stuff. :)


Haha and yesterday, Abe, Graham and I squirted out the contents of an entire shaving cream can and played with it. It may sound boring but it was awesome. Seriously, squeezing a handful of shaving cream is AMAZING.


Hummm I can’t think of anything else to say. OH. This year for school, I’ll be going to freshmen year at Angie’s high school, where she’s a senior. I think I’m doing three days a week, two or three or four classes on the days I go? Yeah, we haven’t figured it out perfectly, but the main idea is that. I’m going to take a photography class, and Angie will actually be in the class with me, so that’s sweet.


Tomorrow being July 4, I’m not sure what we’re doing O_o Probably go see fireworks nearby, or something. haha


I have this huge bag of cards I’ve received, and yesterday while cleaning I read them all, and it was so cool. Thank you guys for all the well wishes, gifts, prayers, thoughts, emails, everything you’ve given us the past three years. Although we tend to forget about replying to most of them (hi, we’re the Earls), they DO mean a lot, and I’m really thankful to have so many people supporting me, and us. Hope you all have a lovely July 4th.


–Esther



With Paul DeGeorge of Harry and the Potters,

BOSTON, MASSACHUSETTS, 2009





Saturday January 31, 2009


Obviously I’m a rather . . . “unique” person. I mean I dislike being with other people besides my family, and even then I only like short visits. It’s not that I don’t LIKE people, or LOVE my family, I just get annoyed with them.


I also do not like sports, thus cutting me out of the “sporty” type of people; I’m not very artsy, I’m not very nerdy, I’m not very cool, I’m not very funny/class-clowny. I’m not very rebellious. I don’t fit in with any group.


Although, lately I’ve been watching a lot of YouTubers, and my favorites are these channels:


fiveawesomegirls—five girls who take turns posting videos on weekdays, their main “topics” are Harry Potter, Wrock (bands based upon Harry Potter), theater and nerdfighteria (more on that below/—> )


hayleyghoover—one of the 5AG, she’s the funniest and makes me laugh :)


italktosnakes—another 5AG, her name’s Kristina and I just like her personality :)


rhymingwithoranges—Jazza—he’s cool, funny, he sings :)


vlogbrothers—two brothers started vlogging and stopped textually communicating for one year. So awesome!!