Month: February 2016

I was at the hospital all day today taking care of a patient with sickle cell anemia.  I learned that if Edda was to have the spinal fusion done at Children’s, she’d end up on the exact floor that I’m doing my clinical rotation.  A helpful nurse said – oh, you should talk to (nurse) Emily!  She just got a fresh spinal yesterday.  Hmmmm, I did not follow through on that suggestion, because, really, how much do I need to know before I will know?  It takes some willpower for me to function at clinical –  fumbling with people/paperwork/medications/documentation/machinery I’m not familiar with, and just gathering enough confidence to walk into a patient’s room with the parent by his side with no real purpose except to “check-in”.  I really didn’t want to pile my own (or Edda’s own) medical stressors into my day.  Maybe next time.  Speaking of things to know, I now know the super-secret code to get into the non-ending supply of grape Popsicles on the ortho post-op recovery floor.

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Jeremy and Vince ended up spending the day with my mother.  They went to see the Rockville Chinese New Year celebration – complete with Monkey king and the crazy feathers that come out of his head.  Jeremy was thoroughly amused.  Vince enjoyed hearing my mom try to explain things.

The celebration indicated that there was to be free food after the performance, but my mother found out that it was going to be some lame sandwiches and the line was long – so instead of that, they went to A&Js and celebrated with real Chinese noodles.

We had a nice dinner at my mom’s house tonight.  We talked about gravitational waves, Einstein’s riddles, and Schrodinger’s cat.  Vince has been watching youtube TED talks (?) with riddles in them, so they are fun to think about and solve.

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Edda, again, has kicked ass in school.  I expect nothing less from her now.  Vince took a look at her report card and groaned (again).

Two cuties in the backseat asleep while we were on our way to Hopkins this morning.  As we pulled up to Hopkins, Keyla asked if this was where Ben Carson had practiced as a neurosurgeon.  I’m impressed she’s keeping up with US politics.  A few years ago, I met a woman whose five-year-old son about to half his brain removed by Carson.  It’s called a hemispherectomy and it’s to treat uncontrollable seizures.  I’m glad I didn’t have to make that particular parenting decision.

The doctor we saw today was recommended to us by a number of DC area Rett families that have had various ortho ailments surgically treated (spine & hip).  This surgeon said that he thought Edda’s back was already far too curved to benefit much from the brace, that it’s already past the “tipping point” and will steadily get worse with age and gravity.  It’s fine for now, not causing pain or unbalancing her mobility.  But the outcome of the surgery is much better when the curve is not as severe – the surgery is less complicated, the recovery is smoother.  He recommended finding a time within the next year that we can, as a family, manage the extra care Edda will need for about two months.  The surgery will mean about a week for recovery in the hospital and about 6-8 weeks recuperating at home.  I guess the good thing about orthopedics is that you can always try to fix something with hammers, nails, screws and cement.

I will lead with the “ins” tonight.

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 Jeremy’s report published today!  It’s an exciting day even though Jeremy’s a bit of a non-celebratory (aka exhausted) mood.

You can read the full report here.
And an article on Vox – here.

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Jeremy was at our town meeting last night where Rockville decided to not accept the northern-most confederate statue.  Nice.  You can read about it here.

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Now with the “outs”:

We took Edda to Children’s today to get an opinion on her curving spine.  The doc did a visual exam, her back didn’t look too bad.  We went down to the x-ray room which was very cute. Children’s knows how to make everything look like the inside of a Disney movie.  The x-ray machine is dressed up like a furry snake (?) with a money hanging from it.

So this is the x-ray of her back.  There is a greater than 50 degree “S” curve in her spine.  The doctor was surprised when he saw it, apparently Edda carries herself pretty well.  The plan is to see if we can try and brace it to keep it from getting worse as she grows.  She might tolerate the brace, she might not.  He estimates about 2 more years of growing. He thinks, most likely, it’ll probably get worse as she ages and if it does, he would recommend surgery to straighten it.  But maybe it won’t get worse.  I guess I could always hope.  We’ll see someone at Hopkins on Thursday, but I suspect it’ll be the same suggestion.

The last “out”?  Vince shattered the screen on his phone.  AGAIN!

Party #1: excellent artichoke dip & chili

Party #2: excellent meatballs & cookies

If football ever falls by the wayside, what sporting event will take its place?  Where will we see all our talking animal commercials?

Thursday is usually date night.  But Jeremy had an evening meeting in DC, so I took my mom out to dinner.  I took her to Cava Grill – the hippest place in Gaithersburg.  I know that isn’t saying much, but we suburbanites want to still feel like we know what it’s like to not drive a minivan.  The line was 30 deep, unheard of in the deep ‘burbs.  My mom was a little astonished at its popularity.

It’s a slightly fancier version of Chipotle – price point was 10 dollars each.

Ordering was a little complicated – I tried to explain tzatizki, hummus, falafel, harissa, and tahini to mom and she settled on some choices, but when we got to the front of the line and saw what each of the things were, she immediately changed her mind.  She got the spicy lamb meatballs.  I got falafel pita.

I took my mom to the Costco, where she bought large amounts of a few things.  Then I dropped her off at home and went to Home Depot because I’m still doing a side gig as appliance repair-man.  Our washer wasn’t draining.  The pump was clogged with 7.5 years of crap.  According to a random person on the internet, I needed to purchase a wet/dry vac to repair it.

Vince and I followed the internet instructions and sucked out about 5 gallons of sulfurous smelling water from the pump.  When we started running the wet/dry vac, it was so loud, I went to get some foam ear plugs.  I gave Vince a pair and he stuck them in his nose at first.  I laughed and said – no!  They are for your ears!

After we drained the washer, we found mold/mildew, hair, a lollipop stick, pennies/nickels, a guitar pick, and sewing pins, a lot of glitter fallen from glittery clothing and it all smelled really bad.  Vince was interested only in operating the wet/dry vac.  As soon as that was done, he vamoosed.  I did the cleaning and ended up smelling like a rotten egg.  But it is fixed!  Just like new.  Not really, but it works.  And now we own a wet/dry vac.

I’m relishing the regular-ness of the week.  Everyone is well, everyone is in a good mood.  We are all doing our regular neurotic stuff, but because it’s all within the scope of a regular week, it’s not so bad.  Jeremy’s slightly anxious and can’t sleep, I’m slightly mopey and become lazy and tend to sloth, Vince forgets sheets of paper all around the house and then sends us into a frenzy 3 minutes before he leaves for school trying to locate them, Edda is pooping on the shower floor, Maxi has diarrhea, and, finally, Ruby is perfect.  Because I know that our days with au pair child care are numbered, (3 months left, but who’s counting?), I’m extra aware of all the help I get around the house because of Keyla’s attentiveness and I’m trying to appreciate every moment of it.

Hmmm…. what else happened today?

Vince is trying in vain to help us keep up with teenage culture.  We hear little bits of sayings that we don’t understand, yet know they are part of the youth vernacular and then we ask Vince to clarify the origin of the phrase and to help us incorporate it into situations and sentences.  It’s hilarious to do this at the dinner table, with Keyla both trying to learn old idiomatic English phrases like “pushing my buttons” from us and then trying to learn new idiomatic phrases like “deez nuts” with me and Jeremy.