Harrison Lake

On Saturday we went with grandma Linda & grandpa Earl to the beach at Harrison Lake, B.C. Avery thought the water was warm, but it really wasn't that warm. Luckily Devon was a sport & jumped right in there with her.

Swimming out to meet the geese

Grandpa Earl had fun wading in & watching Devon & Avery swim about

Jordan, tortured with allergies (we think), sat covered up in the shade to protect her already red, puffy face.

The sand was just as fun as the water

Being buried in the sand is pretty fun, too

Devon decided to swim across the lake while Avery & I walked the shore. Avery ran like crazy, though, so she could "win"

On the other side of the lake were the sand sculpture champions -- pretty amazing stuff

And of course, an ice cream cone (blue bubble gum) to round out the day, as usual

Goin' To Hope

We took a long weekend to visit grandpa Earl & grandma Linda in Hope, B.C., Canada this weekend. On Friday grandma & grandpa took Avery to Dinotown, the local amusement park (and North America's only cartoon dinosaur town), for a day of fun. I sneaked these pictures off his camera.

There were lots of things to do, besides look at cartoon dinosaurs. Avery was in her swim suit because of the splash pad & water slides.
Of course there was ice cream at the end of the day . . .
. . . and at the end of Thursday when they went down to the park in Hope. Hmmmm, do I detect a theme here. . . .

Positively Negative

Jordan & the rest of us had a hell of a day back in mid-June, when her veins got fished for an IV and even her jugular was bone dry. . . . In the end, after 11 painful pokes over 1.5 hours, they were able to sedate her & complete the lumbar puncture. Phew! It was harrowing to be the holder while they poked and fished, poked and fished. Oddly enough, once she was asleep & it was time to draw the cerebral spinal fluid, they made me (and nurse Robin) leave the room.

In the end, there was plenty of CSF to send aliquots all over the world for analysis. It wasn't cheap or easy, but by the end of the day samples were on their way all over the US, as well as Canada & France. We're still waiting on results from the University of Alberta's Metabolome project, but the results from France (for Aicardi-Goutieres Syndrome), and from all the other labs (neurotransmitters, biopterins, and folate deficiencies diseases) were all negative -- of course! These diseases were longshots, but at this point the longshots are all we have left.

So, we're right back where we've always been. All we really know about our mystery Jordan is that her brain didn't form quite right, and that's all there is to it! I guess we'll never know why because there really isn't a why, it just is.

Circus Circus

Monday night was family night at the circus. Highlights included sitting in the arena (so Jordan could see, since they didn't have any other spot for wheelchairs that could see over the 4-foot walls), Devon taking part in the clowns' magic trick, and Avery & Devon riding on an elephant! And snow cones, cotton candy, and staying up late on a school night. . . can you say sugar high?!

4 motorcycles at once, and one rider was only 10 years old

The dog & pony show

Devon's 5 minutes of circus fameHey, where'd that bra come from?The Toscano troupe from ColombiaSitting on the inside

Jordan really wasn't all that excited about the cotton candy, even as it melted on her tongue