I’m spending the day at the computer – coordinating the bid sheets and the descriptions for the Fairfax, VA stroll-a-thon‘s silent auction tomorrow. I’m very excited this year because we have some crazy Team Edda shirts that Uncle Seth has silk-screened (by hand! he’s crafty!) with our logo that you’ll have to wait until tomorrow to see.
Blog fans and readers, if you would consider making a donation in Edda’s honor, it would mean a lot to us here at Just Regular Folks! No donations too small or too large!
Here’s a photo of us when Edda was a month old – when we had no idea of the quirkyness of Edda’s genetic makeup. I feel like this was a lifetime ago!
I’ve put a few buttons to the left side of the blog – Goodsearch and goodshop. I’ve set these buttons up so that if you use Goodsearch to do all your online searching, it’ll contribute about a penny a search towards finding a cure for Rett Syndrome. It’s powered by Yahoo! search, which I have to say is not as sexy as Google search, but I’ve switched over to Goodsearch for all my searches, even if it is to enter “Google Patents” into the search engine. I’m a professional searcher, I think in the past 2 days, I’ve raised over $2 (that’s 200 searches if anyone is counting, I search a lot) towards finding a cure – my goal is to fund 1 drug screen in the next six months just by surfing the web.
The other button on the web site, is Good shop which is probably better suited for folks who might not be able to tear themselves away from the Google search tool. Goodshop will donate a percentage of the $ spent at major online retailers (Amazon, Gap, Home Depot, Zappos, Apple, iTunes, eBay and LLBean to name a few, there are will over 700 stores to choose from). If you click on the button to the right, it’s already set up to donate the $ to Girl Power 2 Cure which is directly funding research to find a cure for Rett Syndrome. So try and remember when you buy anything online, you can probably help us out!
Jeremy got back in touch with his college chemistry labmate, Susan Matthews, via Facebook. Susan was attending medical school when she realized that she loved music more than medicine and became a professional organist and is now the music director at a church in San Francisco. We don’t often get to hear organ music, it just so happens that Susan was in Maryland for a concert and we all trundled down to Annapolis to hear her rehearse and eat at the Macaroni Grill (our favorite kid-friendly place when we want to be a little more upscale than McDonalds).
We hung out at the church playground.
I went to Winchester, VA today for my friend’s V.’s wedding. I met V. only 3-4 months ago, we report to the same manager at the patent office. She’s the person my boss told me to talk to if I had any questions with my work. Well we hit it off pretty well – we talked about the details of her wedding everyday (as well as details about patents) and I was very excited for her.
She had already made up her invite list when we met and wanted to keep her wedding small, I was not expecting to be invited. But I did get invited a few weeks ago and I was so happy I got to go. I went by myself – I did not know anyone else at the wedding, but I just loved being in the country on a beautiful afternoon, with a good spiked apple cider drink and seeing all this happiness around me.
I have a fantasy of being a professional photographer, maybe in another life. Well my true fantasy is to become a professional photographer and use the money I make as a photographer to find a cure for Rett Syndrome. Do you know the going rate for a wedding photographer is $2500 a day?
A few weeks ago, I decided that the bunk bed in the kids’ room was a bad idea because the top bunk was really close to a ceiling fan. We decided that the bunk beds needed to be debunked.
I did not realize that it was going to turn into a king sized crib surrounded by a moat of loose Legos.
Edda is still regularly getting up once or twice at night, and getting to her is incredibly difficult. Because you are not only stepping on a million Legos, but also, you have to hurdle over the side rails in the dark.
Who’s idea was this anyways? Ah yes, I guess it would have been mine, but I thought that we would have 2 separate beds and not 2 beds shoved together where the parents take turns sleeping on the crack that runs down the center of the two.
Edda’s sleeping is driving us to distraction, we are trying Clonidine to get her to sleep better. I have to say the first night I gave it to her, a fantasy of us – the parents, being able to sleep through the night had me salivating and so giddy, but of course, she didn’t sleep through the night. The 2nd night, (last night), she also didn’t sleep through the night, but at least she slept until 5:45 am, which is much, much better than the usual 4:30 am. Jeremy was ready to give up, but I’m hoping the 3rd night is the charm.
Work is relentless these days. Every two weeks, I’m responsible for a certain number of “counts” – usually every 2 weeks, I have to do 8 counts. Generally, I get a count for starting a case (which is hard) and a count for finishing a case (which is pretty easy). The time frame between starting a case and finishing a case is about 12-18 months and there can be a lot of back and forth in between beginning and finish a case, which I get no credit for.
Anyways, I’m in this tough situation where I have to get all my counts from starting cases (hard) and I have no easy counts from finishing cases because I’ve only been examining cases for about 10 months now. And there is a lot of correspondence between me and the lawyers about cases that I’ve started, but haven’t finished. The folders in the photo indicate a recent 2 week period where I worked on 19 separate patent applications.
I’m a little frazzled.
Mom is in the basement roaming around as a stock market bargain hunter. It is fun just watching her glued to the stock market ticker 🙂
On Saturday, Edda and I went to ballet class. Although I usually post photos of Edda happy and smiling on the blog, Edda is often quite unpredictable and hard to deal with when her mood turns. When her mood turns, there is often nothing that soothes her, especially when we are out and about. It is this unpredictability that often has me on edge whenever we leave the house. I often find it draining to take the kids out and about by myself because often Edda will just turn on a dime and be inconsolable and I feel defeated, disheartened and drained. Jeremy, on the other hand, I think because of his more optimistic personality, tends to get a command performance resulting in cheerful outing from our Edda-mame.
Somehow, this weekend (perhaps because so much is going on right now) when Edda lost it at ballet, it in turn made me lose it and we ended up both in tears – sitting on the squishy couch outside in the lobby area of the ballet studio.
Slowly, one at a time, three parents from Edda’s class walked over to our squishy couch spot and gave me hugs and some tender words which were wonderfully touching, but I couldn’t stop crying and neither could Edda. We left early with a sweet hug from the coordinator of the class with a “We’ll see you guys next week!”. I think I’m going to make Jeremy go to the next class.