Maureen.

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.

Eating ice cream. School.

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

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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 (!).

Gravity Falls.

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.”

Head-to-toe.

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.

Being grounded and fasting

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.

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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.

Rett mom’s night out and follow-up!

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.

New car.

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.