Author: Doris

We showed up at Children’s at 7:45 this morning for a follow-up on Edda’s back.  This is the x-ray room.  We did need Kiki’s help to hold Edda’s feet for the full chest x-ray.  She mused that the lead apron protected her reproductive parts (which aren’t that important to her now), but left her noggin exposed to the X-ray.

Edda’s back, unsurprisingly, has gotten worse.   We are going to do the surgery soon – I think in May (which I guess is soon enough – it seemed really soon when I was in the office talking about it, but now as I’m sitting here typing, it seems far away).  She’ll be in the hospital a week, then a month at home (at least) and then three months until she’s back to her regular self.  We’ll get her another refitted brace as we set up the dates for her surgery.  Someone mentioned to me, maybe you can get some free nursing care (like through insurance or Medicaid) and I laughed.  I’ll have my RN degree by then, I’ll be the free nursing care, that’s the only way we’ll be able to get it.

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Jeremy’s off to Portland for a few days.

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I bought a sewing machine.

I need to manufacture a bunch of Edda’s bibs.  For a decade now, I’ve patiently spent an hour or 90 min making each bandana bib by hand, blanket stitch after blanket stitch.  And I’d make a couple a month and for a long time, we had an abundance of bibs. But now, Edda has this habit of chewing her bibs, which makes them degrade faster (so their lives are shorter), soaks them through (which means changing them multiple times a day) and there are many places that she’s going (school, aftercare and home) where she needs a steady supply of them.  So I’m going into manufacturing.  I’ve been assured by an accomplished seamstress that this cheap, computerized sewing machine can take me where I want to go, that I can get the edging pretty much how I want it.  My accomplished seamstress friend was like – do you want me to make 40 for you right now?  I could do that…  I demurred.  She also said I was wasting money buying actual bandanas, that I should just get remnants and go from there.   Right now I’m daunted just looking at the sewing machine.  Will report back later.

We went to Kate and Ateesh’s for Halloween chili – a whole gang of boys went trick or treating.

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We introduced Pip to Cash.

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Vince’s Halloween costume.  He told me, after he went trick or treating, that this was his last year knocking on doors.  He said he got a lot of comments – you’re a big boy, huh?  Yeah….

I took Pip to Sunday night dinner.    He met the three resident pugs and enjoyed some pot roast.  Then he spent some time sharing a chair with Sarah eyeing the whipped cream.

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I lost a diamond today.  Not the main diamond, just one of the three little ones on the inside of the ring.  I will have to mend it.

Pip and I are falling in love with each other.  Although it is in a love triangle with Vince which is a little frustrating to me.  During the day, Pip is mine.  During the nights, Pip snuggles with Vince.  Edda is indifferent, in fact, she almost sat on Pip who is not accustomed to navigating Edda’s rhythms of sitting forcefully on the couch with no warning as the rest of us native residents are used to doing.

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We went to Bert’s 4th birthday party today.  I took over 800 photos and handed the SD card over to Vickey.  It’s been a long time since I’ve picked up the good old huge camera, I’m rusty on the controls.  I took only 2 photos with my phone.

Teenage mutant ninja turtle cake:

It was delicious!

And they are off!

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Mom (and Dad) came by with Chinese takeout.  Everyone’s a little under the weather.

Vince gave Maxi some wasabi.  I think Max didn’t mind it.

Kiki is here!  And she brought some ceramic pots.  And her doggy Pip.  Maxi is very jealous.

It is so cold outside, yet my knockout roses are still blooming.  I should just plant a whole row of these and forget about my garden.  Deer don’t touch these even though it seems like they eat everything else.

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Jeremy’s been working from home this past week because his office is undergoing renovations.  He has turned the guest room into a dorm room of sorts.  Bike, stripped down desk, crap all over the place.  He’s having a good time, though he notices that at 3pm, the house kind of explodes.  Dad comes over for tutoring, Vince crashes through the door, the dogs start barking.  I told Jeremy there is a reason I don’t schedule any attorney interviews past 3pm.  Unfortunately, Jeremy is often on the phone from 2-5pm and he’s tethered by the phone cord to his computer and can’t manage all the dog barking, kid singing, etc…

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Jeremy took my out tonight.  I had a Taiwanese hamburger.

Jeremy took Edda to the dentist today.  We’ve been doing a poor job keeping her teeth clean.  The dentist recommended that we bring her back every three months instead of every six months for a cleaning.  It did take three people to clean Edda’s teeth at the dentist, 2 to hold her steady and 1 for the cleaning.  I think we are going to try a team approach to Edda’s teeth – at least 2 people at a time to do an adequate brushing and flossing.

As it turned out, as I was headed to clinical today, I heard a story on NPR about how hard it is to find dentists willing to do dental work on special needs patients – and the patient they had on the story had Rett Syndrome.  Here’s the story:

I can not thank our pediatric dentist enough.  She looks out for Edda’s teeth, always taking extra time, never charging extra fees.  She’s careful and thorough with Edda’s cleaning even though Edda is flailing and squirming.  She processed all the Medicaid paperwork for us for Edda’s oral surgery, even though she’s not a regular Medicaid provider (which I know must be a mess because it’s a coordination between her, the oral surgeon and the hospital).  He office is always on time, prompt with return phone calls and she always wanting to help.  Sometimes, when Edda is really beside herself with unexplained sorrows, she’ll squeeze us in the same day to check if anything seems wrong with her teeth which might be causing her pain.  She even tells me where to buy the best pistachios.

I went orienteering today.  Such a gorgeous day to be in the woods.  I do want to do trail running, but I’m nervous to go on my own – with orienteering, you are in the woods, mainly on your own, but you pass someone about once every 3 minutes and if you don’t check back in – then they go out looking for you.  Six miles in under this tree canopy.

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I cut Edda’s hair today out on the porch.  I did a pretty good job!.  You’ll have to see it when I post photos later on this week.  Edda’s tripped twice this week.  Once trying to get over a laptop computer cord and once because she stepped on a dog chew bone.  It’s no good.  She’s been so good at balance for years now, to have it happen twice in a weekend is worrisome.  She usually has some weird peripheral vision capabilities, where even though she’s looking straight ahead, she’s able to scan the floor for tripping obstacles.  Usually she’s great at stepping over stuff or moving out of the way.  I know, we should be better at picking up shoes and dog bones, but sometimes you miss stuff.

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Sunday night dinner.  Lasagne!

I’m enjoying improving my Scrabble game.  Now I know at least 2 words that have q without u.

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Jeremy set up his new bike trainer in the living room (for a bit of time, it’s not permanently there or anything).  He spent a bit of time connecting all the trainer to the bike computer to Strava.

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Vince is moving his gaming system to his room.  This is a big step in our household, I’m afraid I won’t see Vince anymore – that he’ll retreat to his room for most of the day/night.  But he was getting so loud in the dining room, yelling with his invisible, online friends sometimes using expletives which, generally speaking, we don’t use in daily conversation – though I don’t mind him using those words with his friends as long as it’s out of our hearing.  I think Vince made and extra effort to come downstairs and hang out with me and Edda this afternoon to prove to me that he wouldn’t disappear for hours and hours.

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Edda and I stayed in our PJs a long time today and watched….wait for it…

Finding Nemo.

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Whenever you move a desk, this is what you find on the floor:

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I fixed Edda’s wheelchair foot buckle.  On my to-do list for at least 2 months.  Took me 20 minutes to do.  This is the story of my life…

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We are trying to start a Sat night tradition of Sat night dinner where we invite people to the house for a quick, simple dinner.  Sometimes we don’t get to chat with people we want to chat with.  Jeremy made jambalaya.  Vince made apple crumble.

Owen, Vince’s pal came over.  We orginally had envisioned Owen’s parents to come over, but they had other plans, that didn’t work out so instead we invited Alice, Mike and Sophie over.

Vince and Sophie played hide and seek.  Mike and I took Sophie’s play-doh and separated out the colors.

From this:

To this:  (to which Mike asked me, so you are a little type-A huh?  mmmm…maybe).