Month: March 2017

Lydia, the therapy puppy came to dinner today!

Vince is working on hyperbolas this week.  I’d forgotten what hyperbolas were and Vince initially called them hyperboles which is confusing because hyperboles are usually not found in math.

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Edda had a nice day and was very smile-y at dinner tonight.  Jeremy usually doesn’t wear his chef outfit on a weeknight.  But maybe the roast chicken called for it?  Not sure.

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I miss three weeks of quilting and they’ve already done so much sewing!  It’s very brown.

We’ve been grabbing these prepared salad bags.  You get greens, dressing, crunchy toppings and all you have to do is rip the bag open and dump everything together.  It’s easy, nice and tasty but it’s not really green.  I’m not sure if I can really count it as eating a vegetable.  Vince really like the asian sriracha one.

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Jeremy took me on a Whole Foods date tonight.  We did not buy any bulk quinoa.  I wanted a cookie, but I didn’t get a cookie.

Today marks the start of the appointments for Edda’s spinal fusion in May.  We went to her pediatrician, mainly for her birthday annual checkup but talked about what we need to do to keep our pediatrician in the loop of all the surgical pre-op appointments and procedures.  I want her pediatrician to be the hub of all the medical information I have on Edda.  I did get Edda the HPV vaccine because we are pro-vaccine, even though we aren’t anticipating Edda to need protection from those types of papillomavirus.

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Then we went to Children’s Hospital where I met with a hematologist who I wasn’t too thrilled with.  Edda has low platelets, I just want her cleared for the surgery and provided a protocol so if she bleeds excessively during surgery to monitor her platelets and do the infusion if necessary.  The hematologist had back surgery himself a couple of years ago and had to take a bunch of time off work and he told me – Edda’s surgery is going to be so much worse than mine!  huh.  Thanks for that boost of confidence.  Let’s just focus on the bloodwork Mr. Hematologist!

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Typing Edda’s blood.  I need to sit down and really write down all of Edda’s appointments, they are starting to multiply like bunnies and I just have them written down on random sheets of paper.

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Finally to school, where I checked in with her teacher.  I haven’t seen him in a bit.

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Got an unexpected extension on a ten-page paper, so I headed downtown to happy hour.

On Sat, we held our 5th annual birthday party/pancake breakfast fundraiser for Edda.  A bunch of Edda’s pals came over (50? 60?) and we made a bunch of pancakes.

Served with blueberry compote.

There was some pancake art:

Lauren made the beautiful birthday cake!

We all sang happy birthday:

And here’s us!  We made it another year.  I’m grateful for Edda’s health and happiness.  I’m grateful for all the support our families and friends provide us.  I’m grateful for all the services that Edda receives.  Thank you all for being part of our everyday.  <3

Edda’s thirteen today!  I will admit that I’ve been moody all week which is not unusual for Edda’s birthday week, always a mix of emotions happy/sad, encouraged/discouraged, lost/found, and maybe a Portuguese word – saudade -a melancholy nostalgia for something that perhaps has not even happened.  I used to be so discouraged that I couldn’t buy Edda something she really desired for her birthday because she didn’t want anything and then that seemed really sad and then I decided she transcended all material wants and that comforted me.  But finally today I decided that she’s just asking for the big things, which I’m not always attuned to.  Apparently the continuation of the ACA is what she really wanted for her birthday.  And she got exactly that.  Happy birthday dearest Edda.  May the road rise to meet you and may the wind always be at your back.

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Birthday party tomorrow.  Lots of bacon.

Lots of furniture moving.

Ohhhh, I love these Kouign-amann.  It’s like a croissant covered in a crunchy sugar coating. I’m eating poorly these days, snacking all the time.   Everything is delicious.

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Edda’s birthday party is this Saturday.  We have no idea how many people are going to come.  Vince is practicing making pancakes with the number “13” in them.

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Costco for all the bacon and orange juice.  I also got a good deal on oral typhoid vaccine Vince needs for China.

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Fruit salad to end the day.  (At least it’s not a pastry).

Edda’s bed rails work pretty well.  She sleeps mostly through the night except for the nights right before and during her period (mostly).  But she moves around like a clock hand.  Here she is in the morning when I found her – all bunched up at the head of the bed perpendicular to her starting position.  I got a huge packet for her back surgery from children’s over the weekend and I spent some time looking over it.  There is a mention that I could donate blood for her to use during her operation and my initial gut feeling was that I totally want to donate blood for her.  And then I’m like – who am I kidding?  The blood donation will flatten me for two weeks and I need all my wits about me for the next couple of months.  Also am I really going to add 2-3 more appointments to the 17 I’ve already got scheduled?

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Vince went to his 15th annual checkup.  Everything checked out OK.  We talked about vaccines for his China trip and also a bit about maintaining a healthy weight.

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But then I took him to McDonald’s after school as a celebration (thank you for the 10,000 days of Chinese tutoring) and send-off for my parents who are headed to China tomorrow.

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Joanne, our Medicaid waiver coordinator, came by for dinner tonight.  She meets yearly with the each of the fifty families she manages.  We are here very last ones for the quarter!

Maxi is a nervous dog, she doesn’t know how to snuggle.  But she managed to overcome her intimacy problems and snuggle up to me for just a moment this weekend.  I made Jeremy take a photo – but you can see in her face, she’s still very concerned.

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Vince hiked 12 miles this weekend and camped out two nights.  The hiking was in good weather, but the sleeping was in wet weather.  Poor guy, everything was wet when he got home.

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I stepped in Edda’s poop tonight.  I put her in her shower chair to get ready to wheel her into the shower.  Her shower chair has a cutout just like a toilet seat.  Anyways, she pooped, I failed to notice and then as I wheeled her into the shower, I stepped in her poop on the floor.  Not fun.

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Happy birthday Sarah!

Look at this cake!

Thurs, I went to an end-of-life simulation where we had a fake patient die from a motorcycle accident.  The patient was a plastic mannequin, but they hired actors to play the parts of the grieving family.  We went through a scenario where you had to talk a family through the decision about whether to withdraw life support or not.  The actors were crying and emotional, the whole scene lasted about an hour and then we spent a bunch of time critiquing how the whole thing was handled.  Even though you know it’s all “make-believe”, it’s still emotional and draining.  Another student nurse who is working at the University of MD medical center neuro ICU says he sits through these conversations every day with a doctor and families.

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Arg, I’m a little too busy.  I like protecting my time.  I like doing a lot of things but not feeling overwhelmed.  Now I’m in a season of a lot of things to do so I’ve cut the following things:  going over Vince’s schoolwork everyday (Vince is picking up the slack, monitoring himself), laundry (big piles everywhere), 1xweek bills (now it’s once every three weeks and the taxes!), blogging everyday, studying/writing papers for the A (this is hard for me), backing off on time working out, cooking “fancy” dinners – lots of fish sticks on my nights to cook, and a million little paperwork things, followup with travel visas, Edda’s surgery, various nursing job applications and certifications.  I feel good though – learning a lot, meeting lots of different people, seeing lots of stuff.  I wish I could do more politically, I wish I had the time to tell you all the things my pals are doing to protect Medicaid – it’s impressive and I’m so proud of them.  Maybe I’ll find the video and embed here.

I set up all of Edda’s pre-op appointments: neurology, hematology, cardiology and pulmonology and her primary care physician.   It’ll be a new cardiologist and a new pulmonologist – we’ll see how it goes.  I let work know about the ramp up in sick time before and after the surgery.

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We forgot to bring Maxi’s bed downstairs.  She’s suppose to sit on it during dinner, but she only found this folded towel.  She’s one the towel because she’s hoping for a meatball.

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Here’s our snow for the moment.