Tag Archives: POTS

The Garden Temple

Posted on June 6, 2011 by Dawn

Oh, I’m behind on the bloggin.

So many good things have been going on that I have MEANT to blog about….

You can check out the flickr stream for the visuals.  In the meantime, here’s a quick update.

Chloe is doing BETTER!  A bit.  But We’ll take it!  Big meeting on Tuesday night with all of the Doctors to make a plan for the summer.  We’re just trying to go with whatever each day serves up and making the best of it.  She is still really dizzy all of the time, and there are some days that feel bad, but there have been other days with SWIMMING, and SKATING at roller derby!  ( see Jimmy’s blog for details  )  That’s HUGE!!  We’re really happy and hopeful that we’ve seen the lowest point now with the POTS adventures.  She has started outpatient physical therapy, which will help her work on her strength and endurance.

And it’s almost SUMMER… which helps with the moods around here for sure!

Lil is great, and looking forward to school’s end in a couple of weeks.

She’s still loosing teeth too. :)

Today we wrapped up a project that has been in the works for a couple of years.   It’s been a  lot of fun and makes me really happy.

Now I get to smile  about them every time I go out in the garden.:)

Here’s a slideshow if you’d like to gander at the individual flags.

 

Posted in Garden, Home & Family, POTS | Tagged , , | 2 Comments

Roller Derby Love Song

Posted on March 24, 2011 by Dawn

Last night a roller derby team dropped by our house.

Seriously, how often in your life do you get to say that sentence?

Yep.  A bunch of skaters from the Chesapeake Roller Derby team came by visit Chloë  last night.  You can check that link to read about how awesome they are.  Don’t tell too many people– but what a bunch of amazingly sweet skater-folk — you know, for a bunch of kick-ass roller derby people, that is. :)   WOW, DO THEY ROCK!  So, so much.

You see, you might not know this, but Chloë really wants to be a roller derby girl– She was working on it and then she got sick.  So, she says now it’s going to be as soon as she feels better.  It’s a dream.  They came bearing smiles and get well-wishes and lots of pirate-love.  She is still totally blissed out over it.  Just sits there in the recliner with her skates on.

All of this came on the heels of a very tough day–  It was so great to see her happy and smiling and INSPIRED!!

She is to be their guest at this weeks opening bout.  She’s taking US!  We are conserving all energies in order to get her there.

It was thunder-storming when they sailed up to our back door.  I think they moored the ship on the giant circus peanut out there.  They weren’t afraid at all to go up to Chloë’s room.  :)

 

 

They brought her booty and love.  (Piratey team swag and also nice red booty!)

They sent get-well cards.

 

They signed her skates and brought her autographed skates from the whole team and left her so, so happy.

 

Thanks from the bottom of the Doran family BIGHEART.

We made them THESE cupcakes, but with devil’s food to feed to the team.  That’s right… there’s a lump of frozen cookie dough in the middle so its sort of the world’s best cupcake. In theory at least, we didn’t actually taste test them first.  Derby people are tough though… even if they came out bad, they’ll be fine.

I sure hope they realize what a special gift they gave to our family yesterday– and how very thankful we are for that.

xoxo Dawn

 

ps.  There’s a lot of POTS chronicles stuff to update you on… and a YARN PARTY fast approaching to show you some pictures of stuff for– maybe tomorrow.

Posted in Home & Family, POTS | Tagged , , , , , | 3 Comments

theurgy thursday

Posted on March 10, 2011 by Dawn

n.

1. Divine or supernatural intervention in human affairs.
2. The performance of miracles with supernatural assistance.
3. Magic performed with the aid of beneficent spirits, as formerly practiced by the Neo-Platonists.

Theurgy is religious or spiritual magic; thaumaturgy is practical magic. Putting it another way, theurgy is directed at changing the magician, thaumaturgy is directed at changing the world.
We could use a little.

 

I hope you enjoy learning these new words as much as I do!  That was the greatest thing about reading the Series of Unfortunate Events book series with the kidlings.  All of the great words Snicket snuck-ed in. :)

 

This week brought a few changes for Chloe.  The trip to Reston was exhausting as usual.  A few minor changes in meds.  The doctor thought that her blood pressure numbers were better.  The changes in her meds are to meant to further address the dizziness now.  It  hasn’t budged as of yet–but she has been feeling well-enough to have a couple of friends visit this week.  That is a good thing and it’s so nice  to hear laughter coming from her room.

For whatever reason–much less sleep than usual going on for her and thus the family.    Falling asleep lately looks like 4-5am for her.  Homeschool classes at 8am.  Big bummer.  Have to figure that one out.

The home-services ball is rolling very slowly.  Making more calls on those tomorrow.  On Friday we’ll be seeing another cardiologist in hopes of finding someone to follow her locally.

Not much else to report for the past week really.

 

I cannot leave this post without a big THANK YOU to the awesome families at The Montessori School who have set up a “meal train” page for us.  We have enjoyed some amazing soup and bread from Dear Vivian, yummy butternut squash soup from the Field family and the most amazing pork barbecue that any of us have EVER tasted from Jill Woodward and The Bachvaroff family.  THANKS to you from the bottom of our hearts and bellies!  It is a great help and comfort to have a meal appear with such love.   You are all very appreciated!

The super colossal THANKS this week goes to Dr Shoe, one of Chloe’s orthodontists. Chloe got  braces put on early  this past fall.   Our orthodontic experience has been super great with their practice.  Their staff is so friendly  and they make it almost FUN to have braces.  There all all sorts of incentive programs for the kids and a comfortable, fun atmosphere in the office.   Chloe has always looked forward to her visits.   All of that aside… Dr.  Shoe MADE A HOUSE CALL this week to take care of Chloe’s mouth.  He brought  things to help Chloe in caring for her braces.  He changed her wires and gave her an awesomely colorful mouth!  Having sore teeth for a  few days never felt so good!  I cannot believe how lucky we are to have them caring for her!  Thanks a MILLION times over.

Drs Siegel. Pick and Shoe.  Orthodontic Rockstars.

 

Fiber update on the way.

xo, Dawn

 

****************************

Squinky  & squinty

 

In Reston, super bummed.

WOwee!

 

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Only Mostly Wordless.

Posted on March 3, 2011 by Dawn


Rollercoaster of life.

Things are pretty much the same with Miss Chloe.  She has settled back into her old meds.  We return to Reston this Friday to see if Dr. A will make any changes.  It is all sooooo. slooow.  The meds take so long to show if they will benefit at all.  The Doctors … well, are so busy.   We are working on some additional options and now have a case manager to help in the crawl towards wellness.   Phone calls today might mean help in a few days or few weeks.   Lists are long. Improvements are so tiny, if  they come at all, and hope is so hard to believe in.  Alas and alack– it is the only way right now. :)   We’re all hanging in just waiting for a grain of sand to shift and movement towards the positive.  Spring is coming– those few nice days were great, weren’t they?  Got the windows open and made friends with a few more stink bugs.  Going to get the garden catalogues out soon and start to think on this years growings.  Also this years groundhog hunting, else the growings are in vain!

Keeping busy– Chloe is still drawing loads of eyes, writing art-letters, keeping at her school work, and skyping with her cousins.  Lil has been sewing and is about to begin embroidering some dish towels.  She is also getting ready to play cello at her first public appearance!  Very excited about that.

I’ve been doing lots of dyeing and spinning.  Went to a small show last weekend and had a nice day.

Jim has been making some amazing tiny dioramas and was a “Pick of the Week” online and made Flickr’s explore.  Check it out.  I think his new stuff is awesome. ( photo stolen from jim’s blog)

More news as it happens.

Family Art planned for this weekend.

 

 

Here are some  days…

 

What else? Scones. ( In her Coraline sweater)

BOB!

Sometimes…

Other times…

Lil in with the faeries

DAISY!

Pigs in a blanket

Wool for dinner, again.

On “special” last week at Trader Joes

Play it 20 times!

The Indie Artist Celebration

Secret Equipment.

ESME!

Again with a DAISY!

Prickly snoogling.

Posted in Festivals & Events, Fiber Arts, Home & Family, POTS, Wordless Wednesday | Tagged , , , , , , , | 2 Comments

color.

Posted on February 21, 2011 by Dawn

Here’s about half of what I dyed today…  (The line is around 13 feet long.)

Who does that without checking the weather forecast??  Now, imagine a drying rack filled to collapse and fiber strung from every pipe and rogue nail in the basement.

Lesson learned.

Didn’t check rightwaytodothings.com.  again.

Weather is to be drippy or flakey for most of the week.  Guess it’s time to spin some wool instead.  I suddenly have a few shows lined up and some good yarny things to share.  More on that a bit later.  Time to get the little to bed.  Test is over for Chloe tomorrow!!!  So glad to get back to some medicine!

sweet dreams.


Posted in Fiber Arts, Home & Family | Tagged , , , | 1 Comment