Tuesday, September 16, 2014

Was summer a dream?

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I didn't have a chance to take any photos today, so I'm posting some photos I took this summer.  It hardly seems possible that summer was just a few weeks ago and now we are knee deep into the beginning of the school year.  It's been wonderful to see Vince, Edda and their friends start to look like the adults they are going to be in a few years.

Monday, September 15, 2014


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Jeremy is at MIT today for business.  This is the tip of building 66, the ChemE building where I spent a summer working on drug delivery polymers.  It was the first and last time I did any sort of animal experimentation.  A little hydrogel disk loaded with caffeine was implanted into a bunny rabbit (which I think a professional bunny surgeon did because I certainly did not do it) and then I was responsible for taking periodic blood samples from their ears which seems not so bad as animal experiments go.  The interesting thing (from our lab's standpoint) was the hydrogel - how it time released its loaded drugs into the blood.  But I didn't know how to draw blood from a rabbit and it was excruciating to keep poking the poor rabbit who was squashed in a tiny bunny jail/restraint.  The summer ended and I do not know anything about what happened to the data or the bunnies or if any of it got published anywhere, I just wanted to leave the lab and not think about it too much.

Jeremy looked for hotels for his business trip, he could not find ANY in Cambridge for less than $500 a night.  It was more expensive than Boston.  We couldn't figure out what was going on in town to cause such a need for hotel rooms.

Sunday, September 14, 2014



Last night, Jeremy made me birthday porkchops with Dave's famous Butt Rub.


This birthday morning, I got the most beautiful day ever for a gift and an opportunity to spend 1.5 hours of it outside with family, friends and their kids.

Vince ran around the soccer field wearing non-regulation BACON socks.

Doris, Happy Birthday

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Doris, Happy Birthday  -  Mom & Dad

Saturday, September 13, 2014

Side Wall (w 3Ws) Is Up for U Street Addition

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Side wall is also half way up.   The first window is just above the bathtub.  The 2nd and 3rd windows are both for the master bedroom.  They are big and low enough to qualify as egress windows.  Beyond that is the mud room or Mom's Mahjon room :)

Sub-Floor Is Up for U Street Addition

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Mom was pretty excited to watch the sub-floor of her addition gradually taking shape.  Beneath that, I have already made the sewage connections and placed the 6 mil plastic sheets for ground cover to channel the possible Radon gas emission and to keep the ground moisture out.  The plastic sheets are there but not completely fixed in place. I guess after plumbing work (DIY) and insulation (by others) I will put them in place properly with a staple gun.

This year, it seems that Mom can finish framing, roofing and siding parts.  The rest is for next year.  The first thing on the list for next year is new deck to connect the old one at the back.  This way, it will make in-and-out much easier through the back exterior door of the addition.

And the last thing for this year is to put the fence in front back to its original place.  I don't think it is hard.

Thursday, September 11, 2014

Clinical. Back to school night.

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First clinical today.  We are a group of good looking nursing students.  I was nervous, but it was a fantastic first day.  My instructor is great, my classmates are smart.  The nurses on the floor seemed to like working with each other and with their patients and did not seem burned out.  And!  I did a head-to-toe assessment on my very first patient.  


Back to school night for Vince.  His science teacher has 70 snakes in his house.  Here I am with Dr. J, the school mascot.  I told Dr. J I was JW class of '86 and he gave me a high five.

Wednesday, September 10, 2014

Thai. Shoes.

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Look at this beautiful postcard Nat wrote.  Such nice handwriting.


Thanks for the shoes, Donald.  They are fantastic and beyond my wildest dreams.  I will take them out for a spin on my acutal birthday.  xoxo.  <3.

Tuesday, September 9, 2014


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Ms. Maureen.  Edda's 5th grade teacher.  We love Ms. Maureen and had a nice chat with her at back-to-school night.  Edda's been doing well with holding her fork full of pancakes and bringing it to her mouth.  Thank goodness for school, they make Edda do all the things we are too impatient to do at home.  We are lazy and just feed her ourselves - just waiting for her little mouth to open like a bird.   One day during gym, she decided that she was done and had had enough so she whirled around and she went up three steps by herself while holding onto the railing to exit the room.  I don't think I've ever seen her clear more than one step.  We also discussed holding Edda back a year - she's in 5th grade now and technically would move onto middle school next year, but it'd be fun to be in Ms. Maureen's class one more year.

Monday, September 8, 2014

Eating ice cream. School.

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Jeremy lost 9 pounds when he didn't eat anything for three days.  I'm happy he's eating again. Especially ice cream.


We had our first lecture today on Adult Health. This is a photo of the review session held right after class.  It took the prof the full THREE hours to go over the syllabus.  I know, how is it possible to spend three hours going over a syllabus?  How much work is there?  Well, all of us were paying full attention for the whole three hours and constantly asking questions to clarify the confusing parts. Because we spent the whole class time on logistics, we didn't actually get to any class content that was suppose to be presented during the first class, so after three hours, we all herded ourselves to recitation where students who took the class last term presented the actual real lecture - very quickly (we were not there another three hours, thank goodness).  The first class of adult health isn't about respiratory issues, it isn't about cardiac issues.  It's about diabetes.  The first thing to learn in adult health is to manage diabetes (!).

Sunday, September 7, 2014

Birthday pie.

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Happy 46th birthday Jeremy.  Enjoy your pie!


Vince wanted to watch a movie starring Robin Williams.  He wanted Aladdin.  I wanted Good Will Hunting.  The compromise was Dead Poets Society with a bowl of popcorn.

Saturday, September 6, 2014

Gravity Falls.

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Edda usually has total control over the living room TV.  We've had about a decade of Blue's Clues and Dora in the background of our home life.  It's hard to watch other things on the family TV because once you turn on the Olympics, Ferris Beuller's Day Off or Dirty Jobs, Edda gets mad and sad and she follows you around the room and gives you no peace.  Sometimes we try to set up a second, little TV right below the main TV to keep her happy.  Sometimes that works and sometimes that doesn't work.  Vince has decided to just hold her in his lap and he just whispers in her ear, "This is a really great show.  Just wait and see."

Friday, September 5, 2014


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Clinicals start next week.  Met my clinical instructor today.  I'll be on a "step-down" floor which is between an ICU and a med-surg floor.  The nurse to patient ratio is 1:4.  My instructor said that the hardest part is to get comfortable with touching a patient.  When I'm a patient, I always expect doctors and nurses to touch me and invade my personal space and I think nothing of it.  Last term, when we had actors be our patients, I realized that it's a weird feeling to be invited into the personal space of a stranger.  I suppose I'll get used to it.

Thursday, September 4, 2014

Wednesday, September 3, 2014

Being grounded and fasting

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Vince has been grounded for the past two days.  Labor Day night, he left the house on foot intending to see if any of his pals were home.  I reminded him to bring his cell phone with him and I gave him two instructions: 1. Text us to let us know where you are.  2. Come home at 6 for dinner.  Neither of these things happened which resulted me texting the whole neighborhood mom network and I still couldn't find him.  Jeremy was about to get into the car to scan the neighborhood when he came home almost an hour late.

So he's grounded for a few days.  It involves only one punishment, no screen time.  Without a little glowing screen, Vince is scrambling around trying to find something to do.  He talks to us more.  He marinates chicken and cooks us dinner.  He reads a book.  It's nice.


Jeremy is doing an experiment.  He's fasting for three consecutive days to throw his metabolic pathways into new, uncharted territory.  Jeremy's been fasting once or twice a week (not in a row) for over a year now, it's how he lost more than 40 pounds.  He did gain a few pounds over the summer and he's always been interested in a longer fast, so this is the week to try it out.  I guess I shouldn't be too freaked out about it, it's not any more crazy than the 7 day juice cleanse that so many people like to do.  Today is Wed?  So he hasn't eaten anything since Monday night.  He reports that the 2nd day isn't so bad - he hardly notices.

Monday, September 1, 2014

Rett mom's night out and follow-up!

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I arranged a Rett MNO on Saturday night at our favorite celebratory restaurant, Founding Farmers.  I always fail to get a good photo at these events.  Even though I consider these ladies practically my sisters, a wave of shyness creeps over me and I can't bear to stop the conversation to get everyone to pose for a good photo.  We had 10 moms, a good turnout (an an extra baby and husband, but we are neither ageist nor sexist).  I used to do these every quarter, but it's been over a year since we've gotten together.  Our girls are doing well and no one was holding a new, new diagnosis, so even though we talked about seizure (medication and weekly ER visits via school), puberty, clinical trials, scoliosis and g-tube surgeries and various Rett charity gossip, the tone was light and we laughed a lot.

At one point during the evening, I realized that I was the only one who had not procured Edda a Tobii device.  This is a computer eye-gaze system that Edda could use to make choices on a screen just by looking at what she wants.  All the other girls seemed to be using one (maybe not so diligently at home, but at least school was pulling the huge device out of the computer bag once a day) and folks have found success recognizing sight words or choosing songs or playing games.  Maybe I've become a little too lax in my parenting duties.  I've had to let go of so many (OK, maybe all) of my original hopes and dreams for Edda that maybe I've slid too far in the the other direction, content to just stay where we are in my little cloud of denial.  It's not only Edda, but I've also done this with Vince.  One of the reasons that Vince didn't do his summer packet was because I looked on the web site and saw 5 different math packets - "Math 6" "Math 7" "IB Math" "Algebra" "Geometry".  I had no idea which class he was in.  I guess I could cross out "Math 6" because he's going into 7th grade and no one emailed me that he was failing math, but the other choices rendered me confused and, not only was I confused, but I had no idea the ranking of the math classes.  If my younger self could look at my self now, she would be utterly aghast at my okayness of having one child who is illiterate and a second child who I can not accurately place his level of math competency.  Maybe I should reassess my priorities.

To round out our Rett-centric Labor Day weekend, we gave our WIKE to Alice.  Jeremy went on a garage cleaning frenzy this weekend and this WIKE is really hard for Edda to use now because it's so low to the ground and Edda is a giant and hard to convince to bend at the waist and knees.  Although the trip was to give the WIKE away, Jeremy really wanted to touch base with Kichul (his IT guru) to figure out why we are getting a weak wifi signal in our garage and at Edda's bed.

Rett siblings:

I'm starting nursing school up again tomorrow.  Because of a curriculum kerfuffle, I'm taking 12 credits this term and for all of you keeping track, that is a full time load which is something I tried very, very hard to avoid.  But sometimes you can't avoid kerfuffles. Whatever.  I'm already letting go of a lot of expectations and settling comfortably into my little cloud of denial.

Sunday, August 31, 2014

New car.

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Our Volvo, which we bought when Vince was less than a year old, has been dying a slow, expensive death.  Two years ago, the check engine light went on and refused to turn off no matter how much money I gave my mechanic.  Because the check engine light was on, the car could never pass emissions (nor could Nat use it to take her driving test).  But I kept getting extensions on the emissions testing and hoped that one day the check engine light would magically turn off on its own.

Then my mechanic mentioned that if I spent more than $450 on repairs to get the car to pass emissions, then I could get an emissions "waiver".  After hearing this information, I went with my repair receipts in hand and got my waiver and kept driving the car with the check engine light on - never really "passing" emissions testing.  No matter that Jeremy spends his professional life trying to tighten emissions regulation and get cleaner cars and fuels on the roads so we can all breath cleaner air and stop that small thing - global warming.

Then about two months ago, the muffler/catalytic converter failed and the car sounded like a Harley motorcycle.  It would have been $1500 to repair with my mechanic cautioning that it might be another $500 on top of that once he got it all apart and could see the guts.  It was so loud, our neighbors thought we had converted the car to diesel.  Now I could smell that the car was spewing exhaust - a "high emitter" in the parlance of car regulation.

OK, now it was truly embarrassing I was driving this broken, exhaust spewing car around.  Finally, we traded the car in this weekend for a Honda Civic hybrid.  It's very quiet and does not smell like exhaust and the check engine light has not yet turned on.  We drove a Civic before we had kids and it feels so much the same, we can imagine like we are kids again.  Edda is having a tough time napping in it as she slides over.

Saturday, August 30, 2014

Ruth and squid ink spaghetti.

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Ruth, one of my most faithful and long-time blog readers, visited us a few weeks ago.  I write the blog for our parents and to keep up my photography interest, but I do pick up a few other readers here and there.  I feel badly that I didn't post her picture on the blog, my only excuse being that it was a rushed and hurried and somewhat somber visit.  So I am trying to make amends by showing pictures of the squid ink spaghetti she brought all the way from LA for us.  We ate it for our anniversary dinner - thank you, it was delicious (Vince and a pal of his even tried it and liked it!) and I'm sure the 16th anniversary is the "pasta" anniversary, right?

Or else it's the "beer" anniversary.

Friday, August 29, 2014

Swollen ankle & getting old together.


Jeremy fell (again) on a trail bike ride this past Sunday.  Again, the wounds seemed superficial - a bruised spot below the rib, a scrape on the inner right ankle where his foot slipped from the pedal and hit the exposed skin.  He did calisthenics on Monday without problem.  On Tuesday, he decided to bike to work.  It's about a 20 mile ride and he left at 6:30 am.  The ride was uneventful and not painful; he was having fun and going fast.  Then I got a text from him at 11am saying that the bike ride was not such a good idea.  His ankle was swollen and it hurt to even walk.  The Tuesday ride to work must have aggravated something that he had more deeply injured on Sunday. He's been downing ibuprofen and icing it.  Poor guy, he's a bundle of injuries right now.


Today is our 16th wedding anniversary.  It's been a long time.  So much happens in 16 years, lots of good stuff.  Lots of bad stuff.  Mostly just regular stuff.  I got married when I was 25 and, of course, I just didn't really know what I was getting myself into.  The trick to the whole thing is to think that you are the lucky one in the relationship.  That (thank god!) you found someone to put up with your shit with humor and laughter and will gently call you out on the crap that you do and also support you when you need the help even when you think you don't need help.  Jeremy told me this morning that he thinks he's the lucky one, but trust me on this: I'm the lucky one.

Wednesday, August 27, 2014