Author: Doris

I have been dragging my feet for 2 summers now and have not joined a neighborhood pool. Jeremy really doesn’t like pools (or the beach for that matter), he gets sunburned and he likes to putter around at home and there is really no puttering around at a pool. So I understand that going to the pool would mainly be for me and the kids (or on work days, Eliana and the kids). In the past, I haven’t liked taking both kids by myself to the pool because 1. Vince couldn’t really swim and he was fearless and I couldn’t track him that well with me taking care of Edda and 2. Edda does not love the water like 95% of Rett girls. So on two counts, it was a hassle. But this year, Vince has swum a lot in camps and can at least swim 20 yards and Edda is more patient and less prone to screaming in the middle of an outing, so this year, I am prepared. There are 3 neighborhood pools and I followed the recommendation of our neighbor and went to the smaller one with a little more shade (which I know my parents will say WHAT!?! because it isn’t the pool we’ve ALWAYS gone to and where I learned to swim myself).

Edda did what she does when faced with something she doesn’t want to do. She fell asleep. We did manage to get about 15 minutes of swim time in with Edda. As predicted, she did not seem to like it that much.

We are “trying out” the pool, but I had a really nice time there today – we ran into three families from the neighborhood and Vince found pals he recognized. And Edda will learn to LOVE the pool. Maybe. At least dangling her legs into the pool was pretty OK today.

We hosted a summer kick-off potluck BBQ at the house today for MD/VA/DC families who have kiddos with Rett Syndrome. Most of the families were from MD; it’s nice to get together and form a little group. We have a really nice group of families in the area, it’s just been great getting to know everyone.

Someone came with a MyTobii, (an eyegaze system), and a lot of the girls got to try it out and I got to try it out.

After the party:

Jeremy’s been in California all week – due to be home at midnight tonight. He was at a work “retreat”. I’m sure they toasted marshmallows over an open fire.

I am exhausted. Last night I went to a planning meeting for this fall’s Rett Syndrome Stroll-a-thon which put me at Metro Center downtown at 10:15pm. Got home at 11pm and was too revved up to sleep until 1 am. Tried to put in a full day of work, but it’s hard to think with 5-6 hours of sleep.

Vince had a bagel and pepperoni slices for dinner tonight, it’s just how we are rollin’ today. I just told him I’m going to bed (it’s now 8:15 pm) and that he’ll need to put himself to bed. He nodded yes while noshing a pepperoni slice and watching a (hopefully age appropriate) youtube.com video (have you seen the new Lady Gaga video!?!).

Edda had avocados tonight for dinner. She both loves them and hates them. Loves them going in, not so much going out. We all have our vices. I’m thinking Edda might need a helmet as her head is getting further from the ground every day. It needs to be cute.

I’m at home tonight – missing my quilting group’s meeting. I have some photos from a meeting a few weeks ago. It’s going to be a beautiful quilt.

Look at this amazing ruching:

A few weeks ago, Vince and pals were down by the river and they caught a few tadpoles. I was out for the evening, so I didn’t see them until the next morning where the ‘poles were languishing around in a Tupperware container not looking too happy:

I tried to tell Vince that no way, no how were we keeping the tadpoles and that they needed to go back to the river with their tadpole moms and dads. I thought Jeremy would back me up on this 100% as he is anti-goldfish. But Jeremy did not back me up, he thought we needed to keep them and take care of the and then if they die we will all learn our lesson. I have now invested at least $40 equipping these tadpoles with a tank, filter, chlorine dissipater, siphon tubing and gravel.

We are feeding them boiled lettuce per the instructions on the internet. We also made a deal with Vince that once they turn into frogs, they are going back into the river. According to the internet, based on this agreement, I would only be responsible for tadpoles for max 3 weeks. It’s been a week and they have been chowing down and pooping and I have seen no evidence of appendages.

Vince had field day on the muggiest day yet this year. He participated in the honorable sports of: squeezing a sponge into a bucket to send a ping pong ball out of the pitcher.

There was also this odd feat of sport – how long a team of 4 can be suspended in the air like:

Spent the evening talking about what makes Jason Beaver, no, I mean Justin Beiber famous. Also, we are spending time enjoying the following videos (I know, we are like 4 years behind, but we don’t have cable and just figured out we don’t even get CBS and we don’t get out to the Apple Store that much).

This weekend we: went out to a Chinese restaurant where I met my 2nd cousin (our grandparents were siblings), bought tubing to make a siphon and gravel for an aquarium (have I mentioned we are raising tadpoles?), visited a friend in the hospital with a burst appendix, bought a ping pong table at a yard sale of one of Ruby’s doggie pals who is moving to Geneva, went to Target to buy ping pong balls for said ping pong table, played ping pong, Vince partied with neighbors at a Mexican restaurant until 10:30pm, Edda partied at our local block party and had a BBQ/bacon/onion ring cheeseburger, went to McDonald’s, hosted a moon bounce at church, took a nap, went to a pool party, went to a goodbye dog party for Ruby’s pal who is going to Geneva (we got their ping-pong table), went to Sunday night family dinner where the Justin Beiber was discussed and where we ogled the new Toyota Sienna (video below). Also managed to do the weekly laundry.

A friend of mine has recently reported success making his own sourdough bread and I have been inspired! Making sourdough bread means making your own sourdough starter and collecting native yeast from the ambient air. This is why they call San Francisco sourdough bread “San Francisco”; because the yeast they use is from the SF air itself. The regional differences in the yeast means that the bread should taste different from different places.

My sourdough starter; the bubbles comes from the yeast.

Kneading the dough:

Forming the loaves:

After rising, they spread more sideways than I expected.

After final baking:

The sourdough did turn out a bit dense, more like a bagel than like what I think of as sourdough. I’ll have to try again. Jeremy mentioned that it is a poor poor time to start a bread baking habit as it is 85 degrees outside and turning on the oven is just not prudent.

Jeremy has been thinking about “marketing” and “branding”, something that is usually not on his mind.

I’ve been thinking about the end of the quarter at work. Only one more biweek!

Edda has been wondering if we are ever going to make it to the pool this year. It’s too hot!

Vince is thinking about Legos, Star Wars and Star Wars Lego.

Edda sporting her silly bandz! The latest (and probably already over) kid craze!

This was the first year since Edda’s diagnosis that I did not go to the Rett Syndrome family conference (it was in Colorado this year) over Memorial Day weekend, it has now been almost 4 years since the day we found out that Edda had a missing guanine that made the connections in her brain go haywire. I did not make a conscious decision that I would not go, it was more like that the weekend was upon us and all of a sudden I saw a lot of Facebook updates and I realized, hey! I guess I’m not going.

Here is what a package of silly bandz look like. I don’t really get the allure, but you can’t argue with a crazy craze.

I wanted to post this video which talks about the present state of the research for finding a cure for Rett, it’s almost 30 minutes, but the whole thing is worth watching, I found it informative.