Saturday, December 26, 2009

Riley gets NSMBWii!!



Riley's most wanted gift this Christmas was New Super Mario Bros. for the Wii. Santa delivered. It was awesome!
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Wednesday, December 16, 2009

Chicken dance


Chicken dance
Originally uploaded by gwonchang
Cluck, cluck.

Thursday, December 10, 2009

Slippery!

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Tuesday, December 8, 2009

Good news for Rye!



It's a small step, but a step nevertheless.

Ever since Rye was diagnosed with his condition, he's been restricted from drinking regular liquids (water, milk, etc) as they are too thin and travel down his throat too fast. The result of that is that the liquid will aspirate (re: get stuck in his throat) and lead to sickness, infections, etc. We end up making drinks for him that are mainly water, Propel power (lemon flavor) and a bunch of thickeners called Simply Thick. The resulting beverage is the thickness of honey.

To you and me, it's kind of gross. To him, it's pretty much all he's known for the past two years or so. It is kind of a drag when we forget to bring his drink along when we're out, or when he sees Haley have a hot chocolate and he can't join in, but otherwise, he handles it pretty well.

Yesterday he had a swallow study done at Children's Hospital. They fire up the ol' x-ray and take pictures as he eats. Depending on what they see, they diagnose one way or another. The last time they did it, he had made no progress and was still required to drink the honey thick liquids. We were bummed, as the surgery was supposed to help with his swallowing. Dr. E told us to be patient and we'd see progress soon enough.

After the x-ray yesterday, it turns out that Rye did make progress and they were able to move him up to nectar thick liquids! We are super excited for that as it is a step in the right direction. Marci said Rye asked if that meant he could have regular ice cream (his ice cream is special as when regular ice cream melts, it is too thin) and she told him not yet. That kind of bums me out as any 5 year old should be able to eat ice cream, right?




Anyway, we're happy with the progress and hope that he continues along this path.

Monday, November 23, 2009

10 funny things about Rye


Self-portrait
  1. Riley likes to sleep with his hands down his pants, holding himself. When we pull his hands out, he stuffs them back in, while he's asleep. It's pretty funny, if gross.
  2. In addition to his hand down his pants, he has to pull his shirt up above his tummy. Some sort of sensory thing makes a shirt on his tummy bothersome.
  3. He's been working on combing his hair in the morning. He hasn't quite grasped it yet, but he's trying and the results are always cute.
  4. He is in love with all things Mario. His dad (me) is a complete geek and he is totally taking after me. A friend of ours gave us an old Nintendo Entertainment System (NES) and all Rye can do is ask me if I can set up the "Nintendo Machine". Mom bought him a Mario shirt yesterday and you'd think he just won the lottery.
  5. His speech is getting better. Weekly visits to Seattle Children's Hospital and one-on-one therapy helps. I've been on his case, too, trying to remind him that "ess" sounds come out his mouth, not his nose.
  6. He loves to swim and is a complete nut in the pool. When it's time to do the end of lesson jumps, he stands on the edge of the pool and wiggles his butt very gracefully.
  7. We've been working with him on his handwriting. It is coming along nicely and it's a really cool thing to watch his improvement. Of course, anyone else reading his writing would be completely baffled, but to me and Marci, it's awesome.
  8. He's developing a love for soup. Unfortunately, he's not supposed to have soup unless it's thick, like a nice hearty stew or chowder. Tonight it was beef stew and he porked out.
  9. Sometimes he says the funniest stuff. Yesterday our family, Knight and Shannon and my mom were all at Target. The boys got separated from the girls. I called Marci to find where she was and Riley said to Knight, "Um, let me check my map," and started drawing on his hand. Awesome.
  10. He has an imaginary friend, Hum, who pops up at the most interesting times.

Tuesday, November 3, 2009

One year ago!



Riley had his head shaved and we were about to slice that melon open one year ago tomorrow. One year later, his hair has grown back, except for on the slice, and life has improved for him. He's still the same old goof ball and we're still learning about how to work with his continuing issues, but the main concerns of his Chiari worsening are pretty much behind us.

Yay for Riley and keep up the good work!!

Sunday, October 18, 2009

Up!


Up!
Originally uploaded by gwonchang
Riley's great in the yard!

Friday, October 9, 2009

Patience

Every time I take Rye to one of his therapies (in this case, speech) I'm amazed at how patient he is. I'm sitting here listening to him practice saying words with his therapist Wendy and it's just amazing how well he rolls with everything.

In fact, when he has trouble (as he did at first today), it really makes his patience that much more noticable. It's days like these that make me want to let him do whatever he wants. TV, video games, whatever.

He's making progress, but it's a slow go, definitely.
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Ouch!

Shiner courtesy of our friend Jax.
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Thursday, October 1, 2009

Sick at home...

But still working hard!

Riley's been stick at home with a fever since Tuesday. He had some homework sent home today so we're hard at work.


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Thursday, September 24, 2009

Who knew?

Riley took swimming this summer and had all the grace of a stone. Now he's at the new YMCA and he's like a fish! It's pretty awesome to see. Makes me proud. He just loves it.


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Thursday, September 10, 2009

More stuff about Rye

Well, since I updated Haley's blog with a note, I should do the same for Rye, right?

Around Riley's birthday, he had an MRI to check the progress of his recovery from surgery (remember that?). I went to Children's with him and Marci to meet Dr. E and see what the MRI results said.

Well, way back last year when Riley had the MRI that showed the syrinxes (cysts) in his spinal column, it was determined that he would have the decompression surgery to try to remove or reduce them. The surgery went without a hitch and he's been recovering ever since.

When we sat down with Dr. E, he showed us this new MRI result and pretty much said the syrinxes were gone! In looking at the before and after MRIs, it was clear that they were much, much smaller. So that's great news!

The thing is, Riley is still having issues with regards to the Chiari and Syringomyelia. He still has problems with fine motor, swallowing, headaches, tummy aches and speech (fine motor). We are getting a lot of help with those things, from speech to occupational therapies, pain management with accupressure and medications.

All this, and he's 5!

As promised, pictures, almost a month later!

The big day!

Time for breakfast!

Excited about a car that can drive on walls.

Rye poses with a necklace from his grandmother.

Oooh. Cake!


Thursday, August 20, 2009

Today is Riley's 5th birthday!

Happy birthday buddy!

Pictures to follow later!

Monday, August 3, 2009

Wednesday, June 17, 2009

Monday, June 8, 2009

An Update!

Well, it's been 31 days since our last update so I thought I'd drop in with a note.

These days, we're winding down with school. I'm at home a lot and spending a lot of time with Riley and co. It's been fun walking him to the bus, picking him up from the bus (sometimes asleep), going to the zoo with him (went on a field trip) and just hanging out.

Though that's not to say it's all been fun and games.

Friday, May 1, 2009

Sunday, April 26, 2009

Friday, April 24, 2009

We are back!

And it was superb! Check this out:


And this:


And, best of all, this:

Check out the cool hat!



Saturday, April 18, 2009

Dr. Seuss merry go round

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Bright and bushytailed

Rye was up early today. Up late last night too. We are at our villa waiting for Hay to wake. As Riley said, "This is the life!"


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Friday, April 17, 2009

On the ground!

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Waiting for Shuttle Express

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And we're off!

Today's the big day. Off to Florida for 3 days at Walt Disney World, 1 day at SeaWorld and 1 day at Universal Studios. Not to mention all the ice cream Riley can eat, Disney pins and hats, and all the margaritas Marci can drink.

Right?

And, as luck would have it, we're scrambling around this morning trying to get Riley a doctor's appointment as we think he has a sinus infection. Super!

See you in Florida! Stay tuned for updates via my BlackBerry.

Sunday, April 12, 2009

Riley and dessert

video

Riley's MAW lunch at Maggiano's

Yesterday we got to tag along with Riley again as the Make a Wish people invited us out to lunch. The plan was to give us the info for our trip, as well as stuff us silly with AWESOME Italian food. The camera was in tow, but I'm starting to realize that our camera isn't the best at low light situations, of which this was one.

We met Lindy and Erin, our wish granters, and headed to our table. The staff at Maggiano's couldn't have been nicer. They went out of their way and got Riley a whole bunch of simian-related items. Three huge Curious George balloons, 2 inflatable monkeys, some books, some stuffed animals and a whole bunch of food.

We got the rundown and ate until we were stuffed. Then they brought out the dessert plate. Needless to say, Riley was pretty excited. We ate like pigs some more. After that, we asked for a little tour of the kitchen and got to do that. Riley and the kids (Haley's friend Erin was invited by Riley) really enjoyed that. That restaurant is huge!

Thanks again to Erin and Lindy, who volunteer with Make a Wish, and the incredibly gracious, friendly and accommodating staff at Maggiano's in Bellevue. They all helped to make a little boy really excited for his special day.

So we had another great few hours with the Make a Wish people. We have the details of the trip pretty much hammered out and we leave on Friday.

This is going to be so cool!

Saturday, April 4, 2009

Look! Up in the sky!

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Tuesday, March 24, 2009

Head, Shoulders, Knees & Toes

Here's one more. Riley sings!

Speech time

One thing Riley's been working really hard on lately is his speech. He goes to a speech specialist at school, and then once a week Marci takes him to Children's Hospital for some serious work. Here's a video of Marci and Rye at dinner tonight.

video

Saturday, March 21, 2009

New 'do!

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Wednesday, March 18, 2009

Make A Wish with Riley

Today was another Make A Wish day for Riley. Erin and Lindy with the MAW organization were able to pull some strings and get Riley some special time at the Woodland Park Zoo. All we knew was that we were going to go see some monkeys. Luckily the weather cooperated and we got a great day for some sight seeing.

Hay and Rye monkeying around before the primates.

We met up with Lindy and Erin at the entrance and were soon met by Lorna, who volunteers at the Woodland Park Zoo and would be our chaperone for the trip. We got to go on a little cart, the 7 of us, and we headed for the silverback gorillas.

Did you know that apes don't have tails (gorillas, orangutans) and monkeys do (monkeys, lemurs) and that when you pluralize monkey, you don't do monkies? That is just plain weird.

From the ground, as usual.

So we saw the silverbacks like the general public does, from the ground. Then we met up with Tracy, who took us backstage. It was kind of like Jurassic Park, only smaller, and with apes. We got to go into an "employee only" area, then behind a gate, then into the innards of the gorilla area.

Tracy told us to not stand on that yellow mat. Apparently LIONS live in there and can be grumpy. We went up the stairs to the right there and headed above the gorilla area, where we (Haley and Rye and the zookeepers) were going to feed the gorillas snack.

There was something very cool about being able to look down upon these gorillas. It was open air, of course, and it was kind of ripe. Apparently the alpha male, Vip, gets a little agitated when there are new people around and he smells pretty pungent. Here's Vip. Catch a whiff.

Vip is a big boy.

L to R: Tracy, Marci, Lindy, Riley, Haley, Stephanie, Erin, Lorna

We watched the zookeepers Tracy and Stephanie toss carrots, apples, celery, lettuce and broccoli down to the gorillas. They each sat in their spots and porked out. All the gorillas seemed to have these cool African names, except Amanda, which is a cool name, but not African, of course. She did have a baby gorilla, though, but the baby's name escapes me. Check them out.

Look out below!

After the gorillas, we headed back on the cart and went to see the orangutans. Though me and everyone else wants to call them orangutangs, they're called orangutans. True! These guys were big, orange, a little spitty, and very cool. Inside their habitat music was played. I think it was Smooth Jazz 98.9, but I'm not entirely sure. Evidently the animals' skin gets dry, so they had dozens of buckets of water in the room to try to keep the air moist. Interesting, huh? I suppose. Riley liked his mask better.

We got to meet a super nice zookeeper named Felicity. She had an accent I couldn't place, and I forgot to ask about. But she took us around the facility (say "Felicity facility" fast) and showed us these orangs who were huge, mellow and just intelligent looking. One of the females on the outside kept blurping her lips at us and spraying spittle everywhere. Better than having feces thrown at us, I suppose.

Caution, indeed.

We finished up in the orangutan kitchen, where Felicity and a co-worker prepared a few gifts for Rye. There was a framed canvas painting that one of the orangutans had made, some pictures of him painting it, and a bent spoon to show Rye just how strong he was. Riley loved the spoon and here's a picture of our new friends.

L to R: Marci, Haley, Riley (bent spoon in hand), (didn't catch her name!), Felicity, yours truly

From the orangutans, we jumped back in the cart and headed up to the lemurs, where we met Nick. He was a pretty cool dude and he showed us the lemurs, which had tails, which meant they were related to:

a. apes
b. monkeys
c. raccoons

Well, they were related to monkeys, of course. They were quite cute, even with their intense, piercing eyes, but due to the fence they were behind, the pictures weren't all that great. I tried my hardest with our new camera, but I think overall, my pix were so-so. Anyway, here's a lemur.

Lemur

Riley was feeling a little spent by now and you could tell.

After the lemurs, Nick took us to see the colobus monkeys. I'm from Columbus, but there's no relation. These monkeys looked like monkey sized skunks. They kind of smelled like them. In fact, they smelled worse than Vip from earlier. It was nasty.

Anyway, Nick and the other keepers were training these monkeys. Nick worked with Morgan the monkey. He was getting Morgan to give high fives, show his ear, shoulder, nose, chin, etc. The reason for that was to get the monkeys used to doing it so when a vet had to check them out, the monkeys wouldn't need to be sedated. It was kind of cool. Just a simple command/reward system.

Nick and Morgan

Interestingly enough, there was another monkey being trained named Haley. Needless to say, my monkey Haley had to check it out. Not surprisingly, Real Monkey Haley wasn't a fantastic listener. In fact, she kind of jetted out of there and went to inspect another monkey's tail when we showed up. Luckily, My Monkey Haley doesn't smell nearly as bad as RMH, so I guess she has that going for her.

My Monkey Haley

Once we finished with the colobus monkeys, it was time to head out. We caught our little cart back to the entrance and took one more picture with the ladies who made this possible for our little boy. They even gave him a goodie bag with books and stickers, stuffed animals and antenna balls. It was so much fun to get this tour and we are grateful for it. Now get out there and support the Woodland Park Zoo. Them's good people!

L to R: Lindy, Hay, Rye, Lorna, Erin

Thanks again to everyone involved! We are grateful for the experience and hope to come see the zoo again soon!

Sunday, March 15, 2009

Boy's time with Riley

Marci and Haley took the morning off today at an American Girl fashion show or something. Who knows? It's a girl thing.

So what did that mean for the boys? It was off to Goldbergs' (their placement of the apostrophe, not mine!) Deli for some man-sized breakfast. 5 chocolate chip pancakes, sausage, and hash browns later, we were stuffed, and then off to home for, what else?

Video games with Riley!

We've been home about 2 hours now and this boy is simply obsessed with the video games. He's a boy after my own heart. Pretty funny. Then again, after two straight weekends of heading to work with me, it was nice to have some simple hang out time.

Of course, it's time to head in to the office again... sigh.

Working hard at Goldberg's

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Friday, March 6, 2009

Did someone say 3D?

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Monsters Vs. Aliens

Through the magic of the Make a Wish foundation, Riley scored tickets to see this movie last night. For whatever reason, he let me, Marci and Haley tag along. Boy am I glad he did!

The movie was fantastic! The 3D was incredible (though Rye seemed to have a hard time keeping the glasses on his face [small nose!]) and the animation was excellent. There were moments where, if I wasn't sitting in a seat, I'd be on the floor. Super funny, super clever and highly entertaining.

Picture incoming!

Monday, March 2, 2009

Happy March

Riley got a massage today.

I guess there is a perk to having brain surgery at 4. You get referrals from your pediatrician to get massages. Not bad!

This little dude has been driving me bonkers lately. As some of you know, work has been difficult lately. When I get home, it's cool to see everyone. Then, after dinner and bath, it's bedtime.

Or so Marci and I think.

Haley usually is a snap. She passes out, and then it's on.

Daddy VS. Riley.

I think Rye does this to push my buttons. Like Office Depot has an EASY button? I have a I AM PISSED button. Riley pushes it by coming out of his room, or saying he has to poop (and then saying his poop is "still sleeping", ie, unavailable), or saying he's thirsty, or wanting a hug and a kiss, etc, etc, etc.

I haven't even seen him but for an hour or so and I'm already envisioning being hauled away in cuffs because I couldn't control myself. So I count backwards from 5... 4... 3... 2... 1... and I'm still irate and I just have to vacate the premises.

Ok, it's not that bad, but I do end up having some Serenity Now! moments.

And to think I only see him about 3 hours a day! Marci is with him MOST OF THE DAY. And to top it off, he's a Mamma's boy! He barely gives me the time of day, until he pushes my IAP button, that is.

But he is the apple of my eye. He is a hoot to be around (when he's not rude and ordering us around) and I can just see how hard he tries at his speech and therapies and things.

His reward is just around the corner, and for this family and our situation, the trip couldn't come at a better time. 7 days of doing nothing but having fun and not worrying about money or work or the economy or anything.

I can't wait.

Saturday, February 7, 2009

Complete madness!

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