Month: April 2015

Ruby spent the day on the deck in the sun.  Just like her mother May Bell used to do in Austin.

Vince and Jeremy went backpacking with the scouts this past weekend.  The weather was going to be spotty, rain predicted for Saturday afternoon, but it held off until after dinner so they mainly stayed dry.  Let me entertain you with my newly aquired GIF ability.  I promise I won’t do this too often.  I might give you a headache if you look at it too long.

The boys were out backpacking this weekend, so it was just me and Edda.  I cooked.  I worked.  And I took Edda places.  In the last few years, I’ve felt like I’ve been a little nervous bringing Edda places. I think I’m just a little out of practice.  Both Jeremy and Nat are so confident when they take Edda out, they’d both take her bungee cord jumping if that was what was happening.  But not me.

Maybe it’s because her mass/height is rapidly approaching mine and I’m nervous about her slipping out of my grip.  Or maybe because I think it’s too much trouble to spend all that time to get her dressed/in & out of the car/getting the wheelchair and we can’t just fly under the radar wherever we go.  I’m trying to not make it a thing or a big deal and just go and do it.  This weekend, we went grocery shopping at Giant, to Home Depot (I fixed our broken dryer for under $3) and to a three-year old’s birthday party.

We were fine.  We had fun.  I should just take Edda places on my own.  It’s not a big deal.

P. S. I love my new watch.  It is totally, entirely, utterly a non-essential item, but it is delightful.  I took a phone call on it today.  I spoke into my watch and the person on the other end spoke through my watch to me.  I tracked my run today (it’s terrible at calculating pace, but just fine on distance).  I’ve taken picture with the remote control on my iPhone.  It’s a clever little thing.

We had a meeting this morning with Edda’s elementary school team and her future middle school team to talk about her transition next year.  We were able to maintain her existing physical therapy, occupational therapy and speech therapy sessions, we are pleased about that.  We even got a slight bump up in PT (an extra 15 minutes a week).  We brought over Edda’s new eye gaze computer and showed it to the team and to the augmentative communication specialist.  We’ll work with the school to figure out what software to buy.

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I was working on patents this afternoon and the doorbell rang.  Jeremy (who was working from home b/c of the morning Edda meeting) came upstairs bearing a small rectangular box.  I asked him, what’s the box?  Did you order something?  He shrugged – I dunno he said.  I opened it and saw a white box inside and I said, hmmm, it looks like an Apple thing, maybe they sent us an extra power cord by mistake (Vince’s power cord broke on Monday and I was fuming that Apple has the audacity to charge $80 to replace it.  I have a love/hate relationship with Apple).  Then I realized that Donald surprised me with an iWatch!

I’m so not covetous of any material thing, I had no intention of ever buying a smart watch, I barely knew today was the release day.  Maybe I’d buy it when everyone else had been wearing one for years (like I did with my smartphone, I didn’t get one until the iPhone 4 came out).  But I had this incredible feeling of giddiness when I opened the package and tried it on.  A little fluttering of the heart and excitement that I hardly ever feel.  So intense and short lasting, this little rush of dopamine.  I can understand why people shop and wait in line for a long time.

Jeremy exclaimed, they are all sold out now!  You can’t get one until June now.  Then he said, I can’t believe you got a smart watch before me.

Thank you, Donald.  You make me feel like I’m hip and with it (day 1 release!) instead of a suburban mom who does all her clothes shopping with an 8 dollar price point limit.

Our dryer broke yesterday.  Lucky for us, we keep a spare dryer on our landing (it has been living there for at least 4 years).  Swapped them out last night and we are back in the clean clothes business.

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Do you know you can get an acting job being a fake patient for nursing students?  Today we interviewed fake psych patients while our classmates looked in via installed cameras in the interview room.  They are trying to teach us to be empathetic and they grade us on how much eye contact is made and how comfortable we made the patient feel.  It’s hard to be empathic with a patient who is hallucinating.  I got the person with dementia.  Other people got bipolar, schizophrenic, PTSD, and panic attacks.  Then we critiqued each other in post-conference.

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The boys are going camping this weekend.  Prep is underway.

With some funding from the state, we got Edda her own eye gaze tablet.  One of the ways that Rett girls have been able to access software is through using their eyes.  Tobii has made a system with cameras that can capture eye movement and use it in place of a mouse.  Many years ago (October 2011 according to the blog), we did a month-long trial where tried a system made by the same company, but it was big, bulky and $18,000. And it was clear to me that it was not an easy-peasy thing for Edda to do.  So we let that go.

Now, less than 4 years later, we have this:

A much more reasonable $3400, which the state chipped in $2000 and then we paid for the balance and now we have a tablet with an eye-gaze bar on the bottom.  For that low, low price, we didn’t get any software and we didn’t get any tech support.

It’s going to take a while to get it up and running.  Jeremy is all excited to figure out the software with the school system.  We are hoping that Edda’ll be able to choose her own videos.  What a big step that would be – to look at all the videos she loves and pick the one she wants to watch instead of us picking for her.  Or maybe’ll she’ll be able to play a simple game so that she could actually direct something!  The little things I get excited about….

Early this school year, I thought that we should try to keep Edda in elementary school for another year.  I love her elementary school teacher so much (and all the staff) and I wasn’t ready for her to move up in the school system.  But it looked like we would have to gather strength and really fight to keep her in her spot and I finally admitted to myself that I was just scared of the unknown – that I just wanted it all to stay the same.

The school year went on and Edda’s current teacher and I would chat every once in a while and she would tell me how much she loved Edda and how much she would miss her next year when she went to middle school.  Today was the day to finally do the middle school tour – I was nervous because I never know if I’m going to be incredibly sad or incredibly happy at the end of any school meeting I have…

But I was really happy at the end of this tour.  Edda’s new teacher is energetic and fun, a bunch of Edda’s old pals are there.  The facility is amazing!  This is a school that they completely tore down and rebuilt only four years ago, so it’s filled with natural light and windows. It has a dance studio, a rock climbing wall, a weight room with treadmills and rowing machines, a beautiful courtyard, a sensory room, beautiful art and music facilities.  (We warned the art teacher that Edda hates art.) There is a whole wing dedicated to special needs students with kitchen and laundry facilities.  This summer, they are upgrading all the computers in the school and giving all the kids Chromebooks.  Edda’s classroom already has two iPads and we’ll be sending in Donald’s old one in with her.  I’m excited about next year.  Edda was a little concerned and gave her new teacher the side-eye, but I’m hoping that she’ll soon love her new school.

Edda woke up this morning with her face, hair and pajamas full of blood.  She had a pretty bad nose bleed during the night and I didn’t notice it was happening when I crawled into her bed at 5 am.  We gave her a quick shower where you could smell the smell of iron, cleaned her up, and she was ready to go to school.  The bleed stopped quickly, but I couldn’t help think that it was my nonchalant comment about “Low platelets? Who cares about low platelets?” coming back to bite me on my ass.

And!  Her wheelchair is on its way to California, hopefully to get the best new brakes ever.  So good that we don’t have to repair it ever again.

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Vince made dinner tonight.  Very spicy chicken legs and avocado rolls.

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Jeremy has developed a need for new shoes to go with his fancy suit.  So he’s trying out different ones, all black, all looking the same from 15 feet away.  I think these penny loafers are the winner.

Vince’s violin lessons are on Sundays.  We had to tell Kelly today that Vince won’t be able to make the recital this May because of a number of scheduling issues.  I relief to me too because I was suppose to play a piano duet with him and I haven’t touched the piece of music.  In exchange, Vince is going to try to do a duet with his friend Ivan who plays the trumpet and we’ll put on a small house concert.

We went to John’s 50th birthday party.  We’ve been invited to their parties before and it’s always a good time (with word games and trivia), but I have to remember they operate on Caribbean time and we operate on engineer time.  The party invitation said 6-10 pm which means that, for us, we show up at 6 pm on the dot and no one is in the parking lot.  Then we circle around Bethesda looking at big houses in expensive neighborhoods.  We arrive as the first guests 40 minutes after 6 and then went the party really starts at 8pm, we had to leave because it is past Edda’s bedtime.

It was a beautiful evening to say hi to friends we haven’t seen in a while.

The lawn was full of wild violets!