Midnight Sun

Oh, so much fun in the land of midnight sun. We're in Palmer, Alaska for a few more days -- I'll have to catch up on my blogging later. So far most of the pics are of the kiddos jumping on the trampoline -- and one can only report so much about that, anyway. Avery has now mastered jumping feet-->bum-->feet. . . .

Lucky For You. . .

. . . you can't smell through a computer. We've had quite an array over the last few days, and I honestly don't know which one was worse: Barf IN Devon's 6-year-old sneaker, or this little job Jordan pulled on Friday morning in the car. First, I put her in the carseat, and within 2 minutes she had pooped so bad Avery and I had to roll the windows down not to gag. Shortly after she tilted her head back and barfed like the water fountains at Bellagio. Nice. I didn't know where to start, so I just unstrapped the whole car seat and carried her into the tub. She was NOT happy about getting showered off layer at a time, but within a little less than an hour we were both washed, dried, and dressed, and all the soft parts of the carseat were in the washing machine. Then it was time to clean up the seat in the van. . . .

That's the red blanket "protector" at her feet -- believe it or not, most of the barf was wrapped up in that. But, hey, a blanket can only absorb so much, there is a saturation point for everything. . . .

Notice the poop on her leg and on the car seat -- and I haven't even started on the diaper. Yep, you guessed it, there was even poop in her hair by the time I got her outta there. Ahhhh, that feels better. I think I'll just take a nap here while mommy sorts out this mess.

Mommy, Take A Picture

Huhhhhh, where did MY Avery go? Here she is in a couple of shots this weekend -- asking for the camera?!?!?

Playing with her " 'puter" (aka Leap Pad). Thanks aunt Jill (it was a birthday gift a couple of years ago, and now she can't get enough of it). Devon and I fight over it trying to get the record for the most states named in that game. He's at 19/20 (it's timed) -- not bad for a Canadian!

And here's one of Avery snuggling with "sissy Joey" -- still her nickname (that's what Avery called her when she was born -- everything ended in a "y" back then). Good thing Jordan was strapped in, because Avery would have pushed her off. We've recently noticed a bit of a possessive shift in Avery's demeanor, and she's now a bit jealous of Jordan (although I don't think she realizes it). She now claims that nana Noma is NOT Jordan's grandma, and demands equal snuggle time with her. I'm sure it's just a phase, right?!?!

What Season Is It Anyway?

Avery got all excited hearing about the 4th of July parade & neighborhood party in nana Noma's neighborhood, and wanted to have a parade herself. So, when Sean & Sarah came over this afternoon to play, they got out the costumes, then paraded around the neighborhood: the spider, the witch, and the Elmo. Silly kids! They had fun, though!

As usual, Avery didn't want anything to do with the pictures (unless she's sitting around with Devon, then she begs me to get the camera out!!)
Elmo Sarah & Spider SeanAnd this is the "running around the neighborhood" part -- literally

Hall Of Family

Or, as Devon calls it, the "cheap Italian restaurant" look. Hey, I've been to expensive Italian restaurants that have walls just the same!

Getting all these photos hung up was a major accomplishment for me. It's a project that's been niggling away at me for months. I could hardly say the words "I want to work on my pictures" before Devon was rolling his eyes & commenting that I would never be done with it. I guess in a way he's right, but this I have promised to myself: I will NEVER get 18 months behind in keeping up with my pictures again!! For 2 months I've been doing pretty well at keeping up, and it's going to stay that way.

Only one problem now -- I'm pretty much out of wall space down the stairs. Hmmmmm, where to next in the house. . . .

Yes, yes, yes, I am a bit picture obsessive -- if you hadn't guessed by now! I fully admit it, and I don't care. I love looking at the pictures of my family & friends.

That Crazy Weather

It just can't decide if it wants to be hot or cold or rainy here, and it's almost July. I hope we have a long, hot summer into September this year, after the cool start we've had so far. I keep forgetting it's June!

This has definitely had an affect on our activities -- including Avery's painting. One day it's "hippy-fest" out on the deck*, the next day we're confined to the art table in the house while the dime-sized rain drops pelt away outside. Personally, I'm THRILLED that Avery has taken to using 6 or more paintbrushes while painting. For awhile, even though she had that many, she would only use one, and everything would end up brown. Today she made this rainbow birdhouse all by herself -- and barely mixed the paints at all.

*Hey, I have enough laundry work (and believe me, I go through bottles and bottle of stain remover each month) that Avery is not allowed to paint in her clothes. Usually she takes them off and wears a painting smock (aka hospital gown), but mid-week it was warm enough that she wouldn't put it on and decided to paint in the nude.

The Balance Of The Universe

Jordan's been so "healthy" lately (knock on wood, tile, drywall, what ever's nearest) that something had to give. Apparently, there must be a constant level of snot in our family, so if Jordan doesn't have it, the rest of us do! Avery was a bit sick last week, but it was hardly noticeable. Devon's throat was sore enough to send him to the doctor on Wednesday, who said to wait it out 10 more days, it was probably viral and would pass. Then it hit me like a ton of bricks. My throat is so sore I want a throat-ectomy, since my tonsils are already gone (at age 28 -- OUCH!!). I can't believe how much ibuprofen can actually help with a sore throat, but it does -- in case you need to know that. I'm also dragging a vaporizer around with me, that seems to help, too, although it's not particularly dry that I notice. And I'm totally wiped out. I think I might have conjunctivitis, too -- although my eye is red & somewhat swollen, luckily it's not goopy. And through all of this, Jordan seems to be doing well. She sounds a little gunky, but she's not coughing very much and we've hardly used the sucko-machine but a couple of times per day over the last week.

Although she did have a rough vomiting day yesterday while we were up on the hill, but that didn't seem to be related to a cold -- I'm not sure what that's related to. Oh well, she was much better today.

Bleck!

Another Day On The Hill

Monday was another day spent at Oregon Health & Sciences University. First we went to the Shriners Hospital for Children to get Jordan a barrier vest. It's made from soft, molded foam, and is designed to help her sit up and to prevent her "functional" scoliosis from becoming "structural" scoliosis (muscle vs. skeletal varieties). Its hot and she seems to hate it, but I love the way it makes her sit up tall in her KidKart & in her car seat. She'll have to break it in slowly, and I don't know what to do to make it less roasting, but we'll work on it. The best part is that they were able to mold it and make it in one day. Nice.
Once the vest was formed (heated & then placed around her to take shape), we headed over to Doernbecher Childrens' Hospital for her 6-month follow-up with the neurometabolic team. They gave us the results of her Comparative Genomic Hybridization (CGH) test -- you guessed it -- NORMAL. It only checks for additions or deletions on about 10,000 genes (~10%-ish), so we didn't really have high hopes of finding anything there, really. And to be sure, her lab reports are always "Normal" -- we expect nothing else.

So, for the last few months we've been going on the premise that whatever is affecting Jordan comes from a one-time brain "insult" that just can't be seen on her MRIs. Now, however, out of now where the metabolicist & neurologist seemed to readily agree that she likely has a yet undiscovered, untestable, untreatable metabolic disease that only affects her brain (usually metabolic diseases also wreak havoc on other organs, like livers & spleens -- hers are fine). There are usually about 10 cases per year in the world like this. I guess we hit the lottery (I'd have rather been struck by lightening, myself!). There's nothing we can do about it, so they said to come back for a follow-up in a year or two, and to continue to try to get seizure control through our regular pediatric neurologist (Keppra, which we are in the slow process of increasing to a maximum dosage).

Because of the colds & illnesses going around, Avery came with me to be my helper. She watched over Jordan carefully, and gave her kisses when she was upset (often pushing doctors or therapists out of the way to get to her). She was in charge of all the buttons on the elevators -- for us and for others, now knows how to read & spell UP and DN (ughhhhh, close enough for now I suppose). And when she wasn't helping she was watching a video, coloring, or lying underneath medical equipment (she really doesn't like rooms with more than 2 people in them, so when there were 3 docs in the room for neuro-metabolic clinic, she was under the computer table hiding). I told her in the morning that if things went well & if she was a good helper we could go on a ride after the appointments. As we walked out of the neurometabolic appointment she looked up and said "so, about that ride???" She hadn't forgotten at all! So we wandered our way through "the Jetsons' " landscape (OHSU is a serious of hospitals & graduate university buildings built on the top of a hill in Portland, and is very strange, if nothing else, to navigate) and over to the tram. The tram is the new symbol of Portland, connecting OHSU on the hill to their expansion campus on the waterfront. Rides are available to the public (6 & over) for $4 return. I was a little worried Avery would be bothered by the heights, but she LOVED it -- both ways. Especially when we went over the forest -- she claims she could see tigers, and lions, and raccoons, and about 50 other animals.
After the tram ride it was back to Shriners for the vest fitting & trial. They had carved up the foam, added straps, and wanted her to wear it for ~30 minutes to see if she had any red spots from it that needed work. She seemed just fine, and Avery & I spent the 30 minutes in the cafeteria eating from the refrigerator section: Jello parfait, watermelon, pineapple, yogurt, and of course, chocolate milk. It was 6.5 hours later when we finally got home, and thanks to Jordan's sore tummy all day I was on my 3rd shirt (covered with barf spots) & Jordan had already used up her 3 outfits I had packed. Luckily we were late enough we got to use the carpool lane on the way home -- zoom zoom from 3:00pm to 6:00pm on weekdays. We were glad to be home!

Meant To Be

Check out the couch we were given. A friend's great aunt wanted it out of her house to make room for her new sofa, so Kelly suggested our house since the sofa was orange. We took it, sight unseen, and it blended in perfectly. Devon & Jordan gave it a nap test, and it passed. Score.

HAPPY FATHERS' DAY

We hope that all of you had a great father's day weekend, despite the grey & gloomy weather (if you're here in the Portland area). We had extra celebrations: Steak dinner with grandma Linda & grandpa Earl on Saturday night (before they left from their wonderful week with us on Sunday morning), and then baby back ribs with nana Noma on Sunday night. On Saturday Avery got to give Devon his shirt & tie she picked out herself (hello 70s!! -- I guess Devon planted the seed in her head that you're supposed to get dads a tie for Father's Day, because for 2 weeks before that's all she would talk about). Then on Sunday she gave him the long-awaited island paradise cake she & nana Noma made earlier in the day. She saw the cake on a magazine cover a couple of months ago, blue frosting, palm trees, sandy beach into a lagoon. Well, this is how her version turned out (below).

blue frosting (blue Jello mixed in), a shark, whale, and dolphin (from her bath collection, via the dishwasher), their balls to play with (malt balls), rock candy, M & Ms (?), fresh garden peas (?) goldfish crackers, teddy-graham bears with leis, a treasure chest (mini-chocolate bar), and coins that wouldn't fit inside the treasure chest, so they were scattered about the ocean.

And when the rain died down, Avery finally decided to give her bike a try in the real world (not through Walmart), and loved it. We were so surprised she was riding we didn't even think she needed the helmet. She's also becoming a water nut during swimming lessons -- ears wet & everything.

Meanwhile, Back At The Ranch. . .

It certainly has been busy around here! We've had excellent, home-made meals every night for dinner, Avery got to go to the zoo on Tuesday, and she even got to show grandma Linda how she jumps off the edge of the pool and gets her face underwater when she's at swim lessons. Meanwhile, grandpa Earl has a new passion: A new power washer (Devon's father's day gift). He even gave him the extra gift of starting on the deck with the power sprayer -- it was amazing what came off. EWWWWW! And all the while they've been maneuvering around my picture pile (see previous post).

Beep beep -- outta the way! We have animals to see!

Petting the sheep in the "farm" area of the zoo

and the goatsriding the horse -- hey, it's wooden!! I want to go to the fair where the horses are real!
Can you believe he cleaned all of this deck on his knees with a toothbrush?!?! Just kidding.
The wild neighborhood -- the pretty poppies
and the 6-foot thistles!Always on the move -- this time the TV/entertainment center is moving to the playroom. It just takes us awhile to get all the stuff from one room to th other, it seems (weekend to weekend).
Avery can't help but lie down and snuggle with Jordan in her new little bed (as opposed to Avery's BIG bed, of course).