Riley's Blog

Look what Rye can do!

2010-03-06T18:19:00.001-08:00

We took the training wheels off yesterday and today, he's zipping around pretty well. I am impressed!

Yahooooo!

2010-01-29T15:15:00.000-08:00

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20/365

2010-01-20T20:11:00.001-08:00

20/365
Originally uploaded by gwonchang

Riley gets NSMBWii!!

2009-12-26T22:33:00.000-08:00

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

Chicken dance

2009-12-16T21:45:00.001-08:00

Chicken dance
Originally uploaded by gwonchang

Cluck, cluck.

Slippery!

2009-12-10T22:42:00.000-08:00

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Good news for Rye!

2009-12-08T09:45:00.000-08:00

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.

10 funny things about Rye

2009-11-23T21:54:00.000-08:00

Self-portrait

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.
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.
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.
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.
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.
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.
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.
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.
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.
He has an imaginary friend, Hum, who pops up at the most interesting times.

One year ago!

2009-11-03T23:06:00.000-08:00

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!!

Up!

2009-10-18T22:03:00.001-07:00

Up!
Originally uploaded by gwonchang

Riley's great in the yard!

Patience

2009-10-09T13:49:00.000-07:00

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!

2009-10-09T12:21:00.000-07:00

Shiner courtesy of our friend Jax.
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Sick at home...

2009-10-01T12:50:00.000-07:00

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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Who knew?

2009-09-24T17:28:00.000-07:00

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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More stuff about Rye

2009-09-10T22:29:00.000-07:00

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!

Riley's first day at Kindergarten.

Speaking of 5, as you see in the other posts, Riley just turned 5. With that came his first go at Kindergarten. After some hemming and hawing about whether or not Rye should be in full-day or half-day K, we made the decision to put him in half-day. Logistically, realistically, physically and therapeutically, it just worked better that way (isn't that a cool sentence??!!). He goes for 3 hours a day and I think it's perfect for him. He comes home and we get to hang for a bit, play some DS, watch some TV, practice counting, talk about his friends and his lunch time. It's a hoot.

We were a little concerned as he was coming from Phantom Lake, his school last year, where he was in a specialized class for kids with special needs. In that class, he was the closest to "normal". His teacher said if she didn't know any better, she'd think he was in the regular classes.

Anyway, so far at his new school, it's been fine. He does get some special therapies still, but it's cool that he's in a regular class. And he's been working so hard! Simply holding a pencil and writing is a very difficult task for him, but watching him do his homework (homework in Kindergarten?!) and seeing the work he brings home is inspiring. So cool to see.

He's been learning songs (some song about apples in a tree. Too cute!) and he's super excited about an assembly tomorrow, where they get to sing a song called, "We Stand As One", or something like that. It's funny what the kids get excited about!

It's been a treat seeing Hay and Rye go to school each day, then hear about their days in the afternoons. Just today, after school, before we went to see Dad, I sat on the couch with one on either side of me and watched some Tom and Jerry. I started thinking about our neighbor's kids down the street, in 6th and 8th grades, and realized this stage of their lives isn't gonna last forever, and I got a little wistful. I gotta lighten up on these kids and just enjoy what we have now.

Good times, indeed!

As promised, pictures, almost a month later!

2009-09-10T21:04:00.001-07:00

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!

Today is Riley's 5th birthday!

2009-08-20T12:17:00.000-07:00

Happy birthday buddy!

Pictures to follow later!

Riley in the sand

2009-08-03T22:44:00.000-07:00

Riley and Marci on KING 5!

2009-06-17T20:56:00.001-07:00

Pretty cool!

(Can't embed the video)

Me taking a picture of Riley taking a picture of Bella

2009-06-16T22:47:00.001-07:00

An Update!

2009-06-08T20:32:00.000-07:00

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.

We still have our moments where I clash with him. He thinks it's fun and I'm trying to think of how not to lose my cool and still get the result I desire. Ignoring him has been a big part of my discipline lately and I have no problem saying that I'm horrible at it.

Medically, not much has changed. Rye went in for a follow up swallow study last week and though it's a lot slower than we'd like, he appears to be progressing. He's also been visiting with a new pain management doctor who has prescribed acupressure magnets (little bead sized magnets attached to small band-aids which we then attach to various parts of his body). It's a lot of work, but, truth be told, it seems to be working.

Don't get me wrong; I don't think Riley was ever in debilitating pain. That would be unbearable for us. He just tells us, "My tummy and head hurt." It's kind of like the Boy Who Cried Wolf at this point. We just give him a hug and he deals with it. I think it's more discomfort for him than anything else. I mean, when he complains, it's like he's telling us that water is wet. Just a matter of fact for him.

Another thing with this new doctor is that she asked us to appear on a segment that KING 5 TV was filming on children working with alternative pain management. Riley and Marci went a few weeks ago and got filmed. I think it's going to be on Wednesday, June 17th. We haven't gotten confirmation yet, but when I know, you'll know.

Here's a picture from the zoo!

Dancing at the Animal Kingdom!

2009-05-07T11:53:00.000-07:00

Collage time

2009-05-01T12:15:00.000-07:00

Pictures from our trip!

2009-04-26T09:08:00.001-07:00

We are back!

2009-04-24T19:03:00.000-07:00

And it was superb! Check this out:

And this:

And, best of all, this:

Check out the cool hat!

Dr. Seuss merry go round

2009-04-18T14:59:00.000-07:00

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Bright and bushytailed

2009-04-18T06:01:00.000-07:00

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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On the ground!

2009-04-17T18:39:00.000-07:00

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Waiting for Shuttle Express

2009-04-17T09:41:00.000-07:00

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And we're off!

2009-04-17T08:12:00.000-07:00

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.

Riley and dessert

2009-04-12T22:39:00.000-07:00

Riley's MAW lunch at Maggiano's

2009-04-12T22:30:00.000-07:00

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!

Look! Up in the sky!

2009-04-04T10:29:00.001-07:00

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Head, Shoulders, Knees & Toes

2009-03-24T23:51:00.001-07:00

Here's one more. Riley sings!

Speech time

2009-03-24T23:18:00.000-07:00

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.

New 'do!

2009-03-21T17:14:00.000-07:00

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Make A Wish with Riley

2009-03-18T22:54:00.000-07:00

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!

Boy's time with Riley

2009-03-15T13:33:00.001-07:00

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

2009-03-15T10:40:00.000-07:00

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Did someone say 3D?

2009-03-06T13:18:00.000-08:00

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Monsters Vs. Aliens

2009-03-06T13:15:00.000-08:00

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!

Happy March

2009-03-02T21:23:00.000-08:00

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.

Complete madness!

2009-02-07T14:48:00.000-08:00

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Riley's scars

2009-02-06T19:44:00.000-08:00

Starting to disappear!

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IMG00178.jpg

2009-02-06T19:41:00.000-08:00

Riley wrote some letters tonight. Pretty good!

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Firetruck sweaters make me think too much

2009-02-05T22:37:00.000-08:00

I was going through the laundry tonight and saw the firetruck sweater that Rye's wearing in the blog picture. Then I thought about all the other fun shirts he wears (most of which are hand-me-downs) like his Scooby-Doo (or, as he says, "Shooby-Doo) sweatshirt, his Spider Man hoodie, and so on and so forth.

I guess it's weird thinking that this little dude is growing up. His Woody (Toy Story) PJs (hand-me-downs) are getting too small too; the top is like a belly shirt.

I don't want him to grow up. I do, but I don't. He's my little buddy! What will I do when he's not so little anymore???

/sigh

Thoughts

2009-02-05T22:25:00.000-08:00

I got home from band tonight and sat and talked to Marci for a bit. Next to me was our scattered bookshelf, where all the kids' books sit, messy and misaligned. I grabbed a cardboard book about counting and flipped through it. It came with a little dry-erase pen that the kid (in this case, Riley) used to trace and write their own numbers.

I looked at this book and felt this wave of sadness. I knew it was Rye's book and on each page, 1 through 10, there were lines where he could trace the numbers. It was a mess. His fine motor skills aren't where they should be. Without the numbers next to what he was writing, you'd think he was just scribbling. But what was cool was that you could tell he was trying. He was trying his hardest and that's what amazed me.

It's just so hard for him. He's 4.5 and he's just had such a rough go. Knowing he's got possibly years of speech and occupational therapy is pretty sad. The thing is, he has such a great attitude about it. It's all he's known, so it's not a big deal to him.

We put him in a new speech therapy this week. Pretty intensive, from what Marci says. I guess this new therapist really works on the physicality of speaking and Riley is really giving it his all. It's still tough, but that little dude really tries hard.

----

So I guess after all this, we're finally going to get some reward. The last 6 months or so have probably been the toughest of my life and, possibly, my little family's life. The reward is coming in April as we finally got confirmation of Riley's Make a Wish! We'll be heading to DisneyWorld and doing all sorts of awesome things. We'll also be there for Haley's birthday, which will make it extra sweet. To even think of being able to go and JUST HAVE FUN is almost too much to bear.

Riley is super excited, of course, but it will be incredible for all of us, I'm sure. I'll keep you posted.

Who wants a Riley update?

2009-01-21T21:09:00.000-08:00

He has a cold. It sucks. This whole year (all 3 weeks of it), he's had either a sinus infection or, now, a cold.

His scars are still there, of course. At his last haircut, the hairdresser said Riley's going to have to have a longer haircut so the hair will grow over the scars. Maybe we'll cultivate a mullet for him. Just like his daddy in the early 90s!

The past few nights have been kind of rough on him and us. For whatever reason, he's taken to giving us a hard time right at bed. Just like old times. It was HORRIBLE! He was up to 10 or so last Thursday, Friday and last night. It's weird. He's awesome from when he wakes until bedtime. Then, at bedtime, he turns into a punk.

Here he is, being a punk... rocker, that is! :)

In trouble and self-soothing

2009-01-03T19:11:00.000-08:00

2009-01-03T12:49:00.000-08:00

Welcome to Riley's Blog

2008-12-31T21:22:00.000-08:00

Now that you're here, what can you expect?

Who knows?

On my other blog, I write about pretty much whatever I want. Or music. Or games. Or anything. On this blog, the plan is to write about Riley. Check back for updates and info. I hope to be able to shed some light on this interesting time in our lives.

And, in a stunning development, Marci has signed on and will be updating, editing and correcting posts! Go Marci!!!

PS: disregard the date of this post. Putting it like that keeps this post at the top of the blog. Carry on.

Letter to Riley

2008-12-24T13:01:00.000-08:00

HI Rye,

Last year, we were getting along really well. This was after about 2 years or so of completely not understanding one another. It got to the point that I was convinced that you didn't like me.

Of course, you were 2 and I was/am an idiot.

These days, you are still so eager to please and be good that when you have a rough day (like yesterday), it really surprises us. I'm trying to remember that nobody's perfect and everyone is entitled to a bad day here and there. If I lose my patience, just remind me of that.

The other day I read through the blog entries for your surgery and was reminded just how lucky we are to have found out about your condition and to live where we live to have Children's so close. We still have root beers in the fridge waiting for you and I to share once we get the OK.

I think it's pretty incredible that you had surgery. And, thankfully, you are still the same little dude. You love your family and your DS (though maybe not in that order). You love macaroni and cheese and monkeys. You're super smart, funny and thoughtful. You still claim to "know everything", though I don't necessarily believe you.

Christmas came a little early this year, especially with the positive outcome of your surgery. In addition, with the wish on its way from the Make-a-Wish people, Christmas will go beyond simply tomorrow.

You, little homey, are so much fun to be with and I treasure every moment we get to spend together. I love it when we hug and you pat my back; it's like you're comforting me instead of the other way around. You and your insatiable snuggling. Mom says you're a clone of me.

Well, if that's the case, then I mustn't be all that bad, huh? A chip off the old block, indeed.

Riley's moustache

2008-12-22T13:29:00.000-08:00

It's Christmas time

2008-12-21T22:38:00.000-08:00

Or is that "It's Christmastime"? Is Christmastime a word? Who knows?

Anyway, just a little Riley update. He is doing fabulously. His scar is healing up really well. Almost all the scabs are gone. The skin is clean and almost smooth. I don't think it'll ever be smooth like before surgery, but it'll be pretty good. Though I'm not sure if his hair will grow from there, though. It'll be like a mini-combover. He'll have to grow the hair a little longer on the side of his scar, then sweep it over. I'll give him some hair gel to help.

We've been cooped up with the snow and all. Rye likes the snow, but I think the effort it takes to get him dressed makes him not want to go out. I think he'd rather be a geek like me and play DS all day.

His speech isn't improving noticeably yet. He cheats a little with his "s" words. He's able to make a "sh" sound, so a word like "snake" is pronounced "shnake". Also, his "kuh" sound sounds like "tuh", so when we have him say "sick", well, you get the picture. Kind of funny.

I'll be back later in the week with Rye's Xmas haul. Should be a big list.

Fun in the meager snow

2008-12-14T12:30:00.000-08:00

Snow for Riley

2008-12-14T12:27:00.000-08:00

Xmas shopping with Rye

2008-12-13T14:19:00.000-08:00

Quick update

2008-12-07T14:40:00.001-08:00

Things are moving along nicely for Rye these days. His hair is growing back, his scabs are healing. He's back at school and you'd never know he had surgery a few weeks ago.

He hasn't made any wish choice yet. We should be meeting with volunteers sometime soon.

In the meantime it's pretty much business as usual, so all is good.

Wow! Good news!

2008-11-26T16:17:00.001-08:00

We got two bits of good news today. First off, Riley got his NG tube removed! See the picture in the previous post!

Good ol' Rye is pretty much back to normal, appearance-wise, at least. His hair is growing back and you can almost not see his scar anymore. It's pretty incredible; I was just realizing that it's only been 3 weeks since his surgery.

Anyway, Marci got to do the honors. She pulled the tube and...... out it came. All 4 feet of it. Or something like that. Kind of gross, if you ask me.

The other bit of news is that Riley got granted a wish from the Make a Wish foundation! What he's going to wish for is unknown at this point, but how cool is that? You can check out their website at www.wish.org. I just took a look and got all choked up for some reason. Weird.

Yay Riley!!!

What is different here?

2008-11-26T10:28:00.001-08:00

Sent via BlackBerry from T-Mobile

Playing cars with Riley

2008-11-22T18:10:00.000-08:00

Getting better every day!
Sent via BlackBerry from T-Mobile

All clear for take off!

2008-11-18T21:40:00.000-08:00

Marci took Rye to Children's for a follow up today. Tube is still staying in, though we expected that. They probably won't take it out until next Wednesday. The good news is that he got cleared to go back to school on Thursday!

Marci will have to train the school staff on what Rye can and can't do. Basically, we've been told to keep him completely mellow. Stuff like running and jumping are no-no's for now.

It's kind of hard to keep that in mind; Riley has been in such great shape since he's been home. We're kind of bopping along, doing our own thing. A few days ago, Marci remembered a story Dr. E told us.

He said he had a teenaged patient who had decompression surgery done. After about 2 weeks of recovery, her dad thought she was doing fine (just like we think Rye is), so they went snowboarding. The good news was she could do it. The bad news was that she ended up popping her dura (under her skin) and had to go back in for surgery.

We don't want that, obviously, so we're going to err on the side of caution and try to keep Riley as low-key as possible.

So going to school should be interesting for us. Riley's been with family for pretty much the past 2 weeks non-stop. I think it'll be great for Rye. As much as he loves that DS, to get some socializing and learning and routine in will be good.

It'll be nice for Marci, too. She'll hopefully be able to get a breather; her body and back have been misbehaving for her. Any reduction in stress will be welcomed. We need a break before the holidays ramp up. Yikes.

Back to normal?

2008-11-15T09:33:00.000-08:00

Well, today Ted and Judy left. It's just the 4 of us at home now. Having the company was great; not only were they helpful around the house, they were also another way to keep the kids busy. The trouble was, their health isn't what it used to be and just getting around the house, moving from floor to floor, would get the best of them.

Considering the events of the past few months, health is pretty important to us these days. The fact that both Ted and Judy are having major issues with their health is pretty unsettling. I don't think anyone's necessarily in dire straights, but things are definitely not like they used to be.

For now, we're just going to continue on. We're giving Riley his "nose drinks" every couple hours (water into his NG tube). Sometime this week he realized he could multitask while he was being pumped with water. He showed me that he could drink from his cup while I was giving him water. I told him to stand on one leg and rub his tummy, so he did. He was quite proud of this accomplishment.

He's been getting a ton of presents. I feel kind of guilty about it. People come by, they bring gifts. I guess if I was on the outside looking in, hearing that a friend's kid had brain surgery, I'd think, "well, they're probably cooped up, the kid is laying in bed with not a lot to do. Let's give him some gifts!"

It's a grand gesture, but to me (and maybe it's because I'm living it with him), Riley seems pretty darn normal. Now, we absolutely have to be aware of his incision and keep him fairly mellow, but by and large, we've been business as usual at home. He's goofing around, we're playing, he just has a little reverse-mohawk on the back of his head.

He gets to go back to school next week, so that should be good for him. Though since he's been with Marci pretty much 24/7 for the past two weeks, we'll see how that goes.

Road to recovery

2008-11-11T10:23:00.000-08:00

The past few days have been pretty good. No major issues with Rye so far. All he wants to do is play Nintendo DS.

He wore something other than sweats yesterday, so it was nice to see him looking normal for a change.

For 99% of the day, he's in awesome spirits. He gets to hang out at home, watch TV and play games all day long. His grandparents are there, as well as Marci, so he's got all his favorite things available to him.

1% of the day, he's a little uncomfortable and tired. He might be a little down, too, with the NG tube and all. But, all in all, things are going great and Marci and I couldn't be happier about it.

Dinner time

2008-11-10T18:20:00.000-08:00

Relaxing with Papa

2008-11-09T10:20:00.000-08:00

Riley is in good spirits today. He seems a little uncomfortable but not too bad. We'll just keep it mellow today.

Go Seahawks. Ugh.

Home sweet home

2008-11-08T21:48:00.000-08:00

I predicted today and today was the day. We got home at 2 and it's all good.

This morning we got a call from some old friends who just found out about Riley's surgery via Facebook. Nuria contacted us and offered to watch Haley for a few hours today. Coincidentally, Haley had just been begging me this morning to have a playdate with someone; she was getting bored with spending so much time at the hospital. So, after some finagling, Ted, Judy and I got Haley over to the Coes' house and we dropped her off.

As I arrived at the hospital, I saw Marci's friend Felicia getting on the elevator. As I got around the corner and saw the elevator, I saw Marci's friend KC, her daughter Katri (Haley's friend), Felicia's daughter Sophie (Haley's friend), and another girl, Erin (Haley's friend).

I felt a little bad about this. Here Haley was saying how she wanted to see her friends and three of her classmates were at the hospital to see us. Luckily, she didn't know and, as it turned out, she had a fabulous time at the Coes. It was probably good she wasn't there anyway, we barely all fit into Riley's room as it was.

Today was a beautiful day. Sunny and warm, for the most part. We were able to take Riley outside to play for the first time in a week. Not only that, he was wire and cable free! It was so cool to see him out and about in the sun and playing with all of Haley's friends.

As an aside, Rye has it made. In about 10 years or so, when Haley's over with her friends, he'll be like a kid in a candy store.

Anyway, we finally got our discharge papers, and it was time to go. Riley was in a great mood. He ate fries and chicken strips for lunch and was just a kick in the pants. We piled into Ted's car and he watched me play DS all the way home.

At home, he was a little tired. Pretty soon, the Coes came over with Haley. Knight, Shannon and Mom came over as well (Mom seems to be fine now!). Uncle Bob and Yumei also made it over and we all just hung out for a bit. A short time later, Rye and Marci went to catch a nap so everyone headed home.

So, that's pretty much what happened today. Haley and I made a nice little banner welcoming Marci and Riley home. We were provided dinner by Nuria (yummy!). Riley practically overdosed on DS. Haley cried herself to sleep (so tired!). And I'm about to have a bowl of cereal.

In other words, the more things change, the more they stay the same.

I want to thank Children's Hospital for their, well, hospitality; Dr. E for his expertise and patience; all the nurses for their care and understanding; Dr. Spanier at Pediatric Associates for not accepting, "He'll grow out of it" as an answer; Rich and Felicia for being there with Marci and Rye almost as much as I was; Ted and Judy for driving 900+ miles to help us keep an eye on Haley; Debbie, Andrew and Helen for creating beautiful decorations to hang in Riley's room; Knight and Shannon for their support and, of course, the DS; anyone who has offered us support in person, online, on Facebook, in prayer, on this blog, at my thread at Gaming Trend, or anywhere else.

And, I want to thank most of all, Marci. She has been tireless through this entire ordeal. Not only that, but while she's been campaigning for Riley, she's also been taking care of our household. She is the glue that holds this family together. As a family we are a team, but without our heart, we are nothing. I am so lucky have Marci as the heart of our family. Her perseverance has given Riley a chance to lead a normal life. Her pursuit of this outcome has been incredible and all the credit goes to her.

Baby, I love you. Thank you for what you've done. XOXO.

Home at last!!

2008-11-08T14:01:00.000-08:00

Heading home!

2008-11-08T13:08:00.000-08:00

Outside!

2008-11-08T11:48:00.000-08:00

Leave Riley a comment!

2008-11-07T21:08:00.000-08:00

If you're interested, I'd love to see some comments that we could read to Riley after he's out of the hospital. Simply click on the "Post a Comment" link below and send him a note!

Thanks!

Feeling better after pizza

2008-11-07T19:13:00.000-08:00

An interesting developement

2008-11-07T18:14:00.000-08:00

In the picture preceding this, do you see something funny? Poor Riley now has a tube in his right nostril. After the events of the day (see here), I walked into Rye's room at 5:00 and saw him standing there with a little yellow tube snaking out of his nose. I just about broke down when I saw how broke down he appeared. All the spirit he had yesterday seemed to be gone.

I was bummed to see that as I hadn't seen him all day. Marci said he was a champ all day, until 3 doctors decided he needed to have the tube (officially called an NG [nasogastric] tube) inserted. Apparently it took 3 people to hold him down in order to put the tube in.

What the NG tube does is allow fluid to be poured directly into his stomach. The liquid bypasses his trachea and, in doing so, allows Rye to stay hydrated. This lack of hydration is why we wouldn't be able to leave.

So what's happening is that when Rye eats or drinks certain things, a small amount is going into his airway, instead of all into his stomach. When that happens, he aspirates and has to cough to clear his throat. If he doesn't clear, then it can pool in there and bad things can happen (pneumonia, infection, etc). This tube is supposed to bypass all that and, within the next few weeks, we'll have him checked out again to make sure he's able do drink properly.

We have a nurse in the room now showing Marci how to use a 2oz syringe to give Rye a drink of water. She has to hook it up to the NG tube and slowly depress the plunger to get the water in his tummy. So far, Riley doesn't like it. It's a weird sensation, with the coolness of the water in the tube going against the skin in his nose. When it's not happening, he's fine. When the water is flowing, he protests, but we're told he'll get used to it. If there's one thing we know, is that Riley will adapt.

It's really hard to see Rye like this, especially after how happy and peppy he was the past few days. He's kind of back to how he was on the first day, attitude-wise. I don't know how Marci's been able to hold it together the past few days. It's been a wild few days and I cannot wait to be out of here. As great as Children's has been, it's time for us to go.

In the meantime, there are two delicious smelling pizzas waiting for us from Pagliacci's (oh yeah. I forgot to eat lunch today!), and as soon as Marci's done, it's dinner time.

Feel free to come visit tomorrow, I'm sure we could use the company. Call me or Marci for details.

Sad little dude

2008-11-07T17:22:00.000-08:00

Playing with Riley

2008-11-06T16:31:00.000-08:00

Latest on Riley

2008-11-06T10:00:00.000-08:00

Since getting out of surgery, Riley has spent 99.99999% of his recovery time in his bed. He's been playing DS (Thanks Shannon) and watching tv most of the time. He hasn't slept much, but I did get to see him eat a bit and that was fun to see. It pepped him up and put some food in his belly.

Today Marci's going to try to get him out of bed. He needs a shower and a tooth brushing, though not necessarily in that order. He threw up a few times on Tuesday and hasn't brushed yet. It's so bad that even he wants to brush his teeth.

Rye seems to be a little afraid to get up and go. He says his head doesn't hurt that bad, but I think he's a little reluctant to test it.

I can't wait for this little dude to get home. I see him every day at the hospital, but I miss him terribly. Marci too, for that matter. Friday/Saturday can't come soon enough.

Riley's new room

2008-11-05T15:32:00.000-08:00

Out of the ICU

2008-11-05T15:31:00.001-08:00

And into regular care!

One good thing about doing the video thing is that it got us priority treatment to this new room. Big, quiet and a view of the U District.

Riley got out of his room for the first time and now he's relaving in his new room. His catheter is out and he's almost wire free!

Eating food

2008-11-05T13:54:00.001-08:00

The OT is here now and doing some food testing. He had some Mac and cheese, Doritos and Cheetos. She's trying to see if he's still silently aspirating. He's almost good ol' Riley and it's fantastic. We played some DS and spirits are very high. He's winking at people and his sense of humor is coming around.

First food since Monday night

2008-11-05T13:45:00.000-08:00

Laying in bed with Rye

2008-11-05T13:22:00.000-08:00

He seems pretty peppy now. They just took out his catheter and we're ripping on the DS. He has to go pee now for the first time. Wish us luck.

Bummer

2008-11-05T08:53:00.000-08:00

Taked to Marci this morning. I guess Riley puked a few times last night and today he's really dragging. :(

He was all perky when I left him last night. Marci says he's in a lot of pain today.

They should be moved from the icu today. More later.

Riley's Surgery

2008-11-04T20:58:00.000-08:00

Marci and Rye are still at the hospital, hopefully resting well. I just got home with Haley and she is hopefully asleep too.

Man. What a day! Whew!

Marci, Rye and I started the day at 5. Well, Marci and I did. Rye woke himself up around 5:30 and we were out the door by 5:50 or so. It was miserable out. Rainy, windy and darn cold. We made the drive to Children's and got down to business.

After checking in, we waited in the surgery waiting area for a few minutes. Talk about depressing. The room is fairly large and there were, at 6:30 in the morning, no less than 10 families waiting there. Waiting for what? Surgery. For their kids. How lousy is that?

We got called back and taken into a pre-surgery room. Riley was his hyper and goofy self. I asked if he was scared at all and he said no. All this time, I've avoided using the word "scared", not wanting to color his perception of the surgery. I asked him why he wasn't scared. He said because he already knew everything. I guess if you know it all, there's nothing to be afraid of!

A bunch of nurses, anesthesiologists, doctors and surgeons came by to visit. They asked us questions (does he wear contact lenses or glasses? !!), they asked if we had any questions. They gave Rye a drug (Versed?) which was supposed to calm him down. Someone brought in a pink Nintendo DS labeled ROCKET SLIME and let Rye play with it. The combination of the two had him on one mellow cloud. He became a floppy little dude and when it was time for him to go, Dr. Jim the anesthesiologist took him without a fight. And that was it. He was gone. Marci and I held each other for a few moments and shared a few tears. After 2 years of searching, our little boy was finally off to get some answers.

Marci and I went to get a bite to eat. A couple of our friends, Felicia and Rich, were planning to join us at the hospital for moral support. I tell you, I could've used them at breakfast time. They could've brought some edible food! But I digress.

After a lousy meal, Felicia showed up. Her and Marci and I chatted a bit and hung out. Rich was nowhere to be found. Finally, an hour later, he showed up. Thanks to the power of his iPhone maps, he ended up at Children's Hospital's admin offices in downtown Seattle. Oops. Once we were all rounded up, we headed to the family hang-out area to relax, talk and update.

We did receive pages throughout the morning with updates to Riley's condition. Basically this old school black clip on pager would wail loudly, indicating that we needed to call the ICU desk, which would then patch us through to the OR. They told us that they had Riley pinned down, that they started the micro surgery, things like that. We got a call later saying that some woman wanted to talk to us about the video we'd shot yesterday and the video being shot currently of the surgery.

We met her downstairs and she just kept talking and talking. She was the head or some VIP of the Chiari Syringomyelia Foundation (CSF), the group that was going to use Rye's video for education and information for people researching Chiari. I thought she was going to talk about consent, etc, but she was there kind of pushing her cause. She gave us good info, but it was a little too sales-pitchy for me, so I tuned her out. Finally, Rich and I headed out and went to chat.

I was also updating Facebook, this blog, as well as my thread at Gaming Trend all this time. I had my trusty little Blackberry with me and was plugging away with updates. I kind of know how a smoker feels now. The hospital is a cell dead zone and in order to post or email, I had to go outside. So every 45 minutes or so, I hoofed it outside to do just that. If I did smoke, I guess I'd be multitasking out there.

We got a page around 11 or so saying that Riley's microsurgery (the actual work on the brain) had begun. About an hour later, we got a page indicating that Dr. E wanted to speak to us. We hoofed it over to the ICU area and waited. My imagination started goofing off again and I started to expect Dr. E to come around the corner with a defeated look on his face and bad news for us. Before I completely freaked out, he came and told us surgery was done and it went as perfect as it could have.

Sweet relief!

He said Rye hardly lost any blood (a thimble-full), that the extent of his Chiari was "impressive" and that he was able to do exactly what he needed to do. He showed us a few snips of video that was shot from the microscope's vantage point. It was pretty fascinating. The hole in Rye's head looked to be about as big around as a Yoplait yogurt cup. We got to see his brain (looked like crabmeat), as well as his cerebral tonsils "shrink" as Dr. E moved them back away from the spinal cord. Incredible stuff.

After talking with Dr. E privately, we did it again for the cameras. It'll be interesting to see just how photogenic we are after stressing for 5 hours and having gotten up at 5 in the morning. I hope to have a DVD soon so we can put some up for everyone to see.

From there ,we had some lunch. Riley was still out and had to have a follow-up CT scan to check for any blood clots. After that, he'd be put in the ICU where he'd come up from the anesthesia. So it was back to the cafeteria for more fun and games.

About a half hour into eating, we got a page saying Rye was up. Marci hoofed it to his room, a little nervous because she'd promised him that she'd be there when he woke. When we got there (pretty much the exact farthest point in the hospital from the cafeteria), he was moaning and sobbing for Marci. It was pretty sad and emotional. I saw him in his bed, shirtless, then I saw his scars on the back of his head. He had a half-reverse mohawk from the base of his neck, up the back of his head. He had two 2" long vertical scars and, in all, looked pretty gnarly.

I held it together pretty well until I started telling him how proud I was of him and that there were so many people offering their thoughts, prayers and well-wishes. It's amazing how one little dude can have so many people (strangers, even!) pulling for him.

Marci held Rye for a while. He was tied up with cords and tubes and a catheter (!) and it was a chore, but she did it. He eventually calmed down and faded in and out. I was so excited to see him and really marveling in the fact that over the past 6 hours or so, someone performed brain surgery on him, yet here he was, even better than he was then. Incredible!

Over the rest of the day and night, we had Rich and Felicia there, then Haley, Ted and Judy showed up later. Haley got a little weird when she saw Rye's scars, but she was cool with him later, as long as his scars were hidden. She gave him a card she wrote at school and I just about lost it when I read that Haley wrote "Riley, I miss you" to him. Rye got to talk a little and I'm happy to report that the same little dude is there under all the wires and hoarse voice. Poor guy didn't eat anything all day, and only had a little apple juice in the early evening.

So for the next few nights and days, Riley and Marci will be staying at the hospital. He should be getting out of the ICU and into standard recovery by tomorrow (pending tonight's stay), and, with any luck, will be home by Saturday (my estimation, crossing fingers!).

Later tonight, Knight and Shannon stopped by. We were able to take Shannon in, but poor Knight not only couldn't come in, but had to wear a germ mask as he's been getting over a case of the flu. Shannon came bearing gifts. She brought a DS! Not sure if she knew or if it was coincidental, but we asked if Riley wanted a gift and he lit up as much as he could. She gave it to him, unwrapped, and he gave a nice little smile. You could tell he was super happy about it even though he couldn't really show it.

Overall, it was a scary, exhausting, funny, relieving day. I am beyond relieved that my little dude made it through surgery with flying colors. I'm so happy about the potential he has to improve. And I cannot wait to have a root beer with him. That's the promise I made him way back when, that when he got all better, he and I were gonna have root beers to celebrate. That'll be a good day.

Update

2008-11-04T16:42:00.001-08:00

Marci's parents are here with Haley. I took Hay back first. She was a little freaked out when she saw Rye's scars. But was ok about it a few minutes later. The in-laws are with him now and I'm gonna head back with Hay to get Rye a drink.

That's my boy!

2008-11-04T15:02:00.000-08:00

Playing (trying to!) the DS.

Riley back in bed

2008-11-04T14:39:00.000-08:00

Riley and Marci

2008-11-04T14:16:00.000-08:00

In his room now

2008-11-04T13:19:00.001-08:00

Riley is crying and in a lot of discomfort now. It's pretty heartbreaking togear him sob, even though it's to be expected. I just want him to be ok and happy now.

Maybe I should get the DS...

He's out and he's good

2008-11-04T13:05:00.001-08:00

Surgery was done at noon or so. Dr. E came out and told us that it couldn't have gone better. We're going to go see Riley now. Thanks to everyone's well-wishes and prayers!

Update

2008-11-04T11:18:00.001-08:00

1035: I guess the prepwork is done. They have Riley screwed in and stabilized. They have removed C1(vertebra) and have started the microsurgery.

I just imagine him face down on the table with a hole cut on his head. Scary.

A good sign!

2008-11-04T10:16:00.000-08:00

Sun, glorious sun!

I just noticed

2008-11-04T09:16:00.000-08:00

My socks don't match. And I didn't bring a book. Or a battery charger for the BlackBerry. I am woefully prepared.

It's on

2008-11-04T08:55:00.001-08:00

Surgery started at 8:40. Just got the call. Cross your fingers.

Cafeteria food

2008-11-04T08:46:00.000-08:00

Children's is a great hospital and all, but, man! Can they do something about the food in the cafeteria?

I just ate scrambled eggs, hash browns, sausage and bacon. I can tell you that only the bacon was good. The maple bar was tasty as well.

I suppose I shouldn't complain. After all, I don't go to Taco Bell for a physical.

And, he's off!

2008-11-04T08:07:00.001-08:00

We just sent Rye off to surgery. Note to self: get Riley a Nintendo DS soon. That thin worked better than any anesthetic could. More later. No reception in hospit and it's freakin cold out here!

There's no turning back now

2008-11-03T22:23:00.000-08:00

Well, tonight's the night and tomorrow's the day. Marci's running around the house packing for a week; she'll be staying with Riley at the hospital as he recuperates. It's 10:30 now and we have a 6:15 appointment in the morning. Ugh.

We met with Dr. E today, after a quick little CT scan to see about the thickness of Riley's skull. Unbeknownst to us, they needed to see how thick his skull was so the doctors could insert pins to hold him in place. After all, like I always say, a few little screw holes in your skull is better than an accidental lobotomy. Good news. His skull is nice and thick (Marci's side of the family), so the pins/screws should be no problem.

Later, after a delicious cafeteria lunch of a chili dog, corn dog, Doritos and ice water, we met with Dr. E. Don't know what's going on with the hospital; you'd think they were giving away free Tickle Me Elmos or something. That place was hopping.

Anyway, at the meeting with Dr. E, we had agreed to let the hospital (or, "hosibol" as Haley and Riley say) film us for the Chiari Syringomyelia Foundation and for study.

Say, I wonder if that was why he was in a suit and tie today....

So the meeting went well; he basically went over the basics again and explained what he was going to do. Riley was a nutjob. He's addicted to my and Marci's BlackBerrys. All he wants to do is play BrickBreaker!

The guys filmed us and we did our best not to be divas for the cameras. Evidently, they'll be filming the surgery tomorrow too, so for the stout of stomach, maybe I'll put up some videos? Or, maybe not.

Keep checking back for updates. I'll try to do them as time permits. I don't think I'll have computer access at the hospital, but I'll use my big brain to remember stuff to write.

Thanks to our friends, old and new, and family for all the support. It's freaky to think about, but we're bettering this dude's life and that's what's important.

More thoughts

2008-11-02T23:22:00.000-08:00

Crossposted from So Yummy:

According to Riley's countdown timer, we have 1 day and 12 hours left until his surgery. In other words, the day after tomorrow. Here's something I wrote at Gaming Trend, a website I frequent. When Dad died, I wrote there a lot and they were great for me. Some of what follows is redundant, but not everything I write here goes there and vice versa.

My son Riley is 4. In the past 4 years, he's grown from a needy little mama's boy into a, well, needy little mama's boy (in a good way). He and I have had epic battles, as evidenced by a thread on this very site. Over the past year or so, though, he has matured quite a bit. The epic battles are, thankfully, a thing of the past and he and I get along quite well now.

Back then, we didn't think anything of his behavior, other than, WTF? He wouldn't sleep well at night, he talked funny, he made a mess at meals, and he seemed to march to the beat of his own drummer. The thing was, we just figured he was what he was and would grow up to be fine.

Certain things he did were weird, however. As his teeth grew in, he drooled, of course. After his teeth all came in, he continued to drool. No big deal, right? He'd grow out of it, right? Not really. We had him checked out and the doctors concluded that his tonsils were too big and limiting his swallowing abilities, so the tonsils were removed. That seemed to help things along; he was swallowing better, but still having issues. Further studies indicated he was having issues with liquids. He'd silently aspirate (the liquid would get caught in his throat {think frog in throat}) and after time, he'd possibly get an infection. The doctors recommended us mixing anything he'd drink with something called Simply Thick, a gel-like substance that would thicken his drinks. As a result, anywhere we go we have to carry around a sippy cup of drink mixed with ST. It's a pain, but it's what we do.

Rye also had trouble with things like going down stairs. Coming up was no problem. To go down, he could walk, but it'd be both feet on each step at a time. At age 4 now, it's the same. He can go one foot at a time, but it's awkward and slow. He has trouble with fine motor motions, things like scissors or writing utensils or eating are usable/doable, but not as adeptly as a 4yo should.

With all these issues, the doctors kept telling us he'd grow out of it. That after time, he'd be "normal" and we'd be fine. Well, my wife kept on it and going to different specialists and therapists. After one appointment, we were recommended to get Riley an MRI. The ENTs and swallowing specialists were getting us nowhere and with all the medical issues (aspirating, numerous sinus/ear infections, etc) and life issues (inability to simply drink from a water fountain, difficulty eating neatly, etc), we wanted to find out just was was affecting Riley.

In early June, we had an MRI done. A few days later, the pediatrician called and told us Riley had something called Chiari Malformation. We found out on a road trip down to California and I wrote about it in more detail here. Anyway, what Chiari means, in a nutshell, is that Riley's brain is too big for his head. The neurosurgeon we've consulted with said it's like having a size 10 foot in a size 9 shoe.

Some symptoms of Chiari include loss of fine motor skills (check), difficulty swallowing (check), frequent gagging and choking (check), among other things. Riley's brain is blocking the flow of cerebro-spinal fluid from the brain to the body. As a result, he's had syrinxes (cysts) form around his spine, which may or may not be pressing on certain areas that are causing his symptoms. You mess with the spine, you're going to affect other parts of your body.

In meeting with the neurosurgeon, he said that though the Chiari wasn't life threatening, it could potentially impact us dramatically. He said that Rye would be in a wheelchair if we didn't do something about it. Riley has 5 syrinxes along his spine and they will not dissipate unless we're able to improve the flow of his CSF. The doctor said Riley's case of CM was pretty severe, so, after deliberation, we decided to proceed with the surgery.

The past few months have consisted of us keeping a close eye on Rye. We've had to keep him from doing anything tumbling-related. We've had to make sure he's not bonking his head on anything. That hasn't been too hard, but it got hard when he'd complain that he could'nt do anything (Haley would go to gymnastics and Rye could only watch). We keep telling ourselves that this is a bump in the road and that in 6 months, he'll be healed up and working on the skills he should have if he didn't have CM.

Nevertheless, the thought of my little dude having brain surgery is a little unnerving. Obviously there are risks. Death, paralysis, other unmentionables. But we're looking at the big picture. His quality of life will improve. He'll be able to just "be". Luckily, he's pretty clueless about the situation; he's lived it his whole life, after all. He knows of surgery, he knows he's going to the hospital. He knows he has issues, but he's had such a great attitude about it all.

Haley's a little stressed as well, we think. First with her grandfather's death, then school starting and now her brother's surgery, well, she's kind of a mess at times. It's so hard to be patient with her when she's being bratty, but it's just something I need to work on.

Marci, my wife, has been driving herself to the point of her back almost going out. She's been spraying Lysol all over the house (we have to keep Riley from getting sick, otherwise they'll postpone the surgery), taking him to all his appointments, etc. She's keeping it together, but it's been tough.

The in-laws are coming in today for a few weeks to help while Marci and I are at the hospital. They'll keep an eye on Haley and just be here for moral support. Riley will be in the hospital for about a week. He'll be in the ICU for 2 days or so, then a few days more in recovery. After that, it's back home where our duty is to keep him as still as possible. We're gonna inundate him with TV, movies and, of course, video games!

Through it all, I've been doing ok. No meltdowns or anything, though this weekend, I've been a little short of patience. It has been a tough week, in my defense. My work is slow; this economy, cliche as it may seem, is really affecting it (sales). On Friday, one of my employees resigned. Not a total surprise, but still a shock. As some of you know, my dad died in September and though the shock and grief of that have passed, it's still on my mind a lot and quite a bummer. Add in that the in-laws will be here and that my m-i-l wants to horn in on our pre-surgery appointment (WTF) on Monday, and, well, there's a little stress.

Things could be worse, I suppose, but still, one never wants to take a kid to surgery. I'm confident everything will be fine, but man, brain surgery? That in and of itself is enough to freak anyone out.

Anyway, if you can, keep us in your thoughts. You guys were a great help when Dad passed away, in terms of helping me get through it. I don't think this will be as dramatic, but it's no less stressful and any support or humor or both you can lend me will be appreciated.

It's funny. When Ted and Judy arrived tonight, the kids went nuts. They were super excited to see their grandparents. It wasn't until a little later that I saw Rye and Ted goofing around and I started to get a little misty-eyed. It was so great to see Rye with his grandpa, but so sad at the same time.

Also, I cut all of Riley's hair off tonight, just before T&J arrived. Shaved him down with a #2 all around. Luckily he's a handsome little dude, so the high n tight doesn't look bad on him. On me, I look like a black q-tip. It's lame. But it was almost emotional for me to shave his head. Made Tuesday that much more concrete for me. I took some pictures, but they're on Marci's computer. I'll have to upload them later.

I also busted out the video camera for the first time since Rye's birthday. Shot maybe 20 minutes of video today, just goofing around, things like that. I know that this surgery isn't going to affect his personality or who he is, but, until I see that little dude back to normal in a few weeks, I'm not going to take it for granted.

One last thing: I'm not one to complain (usually), but what's with the drama the past 2 months? First Dad, then this horrible economy, which is really affecting work, then Riley's surgery and someone resigning from work on Friday? Can a brother get a break sometime? Add in Marci's recent mystery allergies and her back going out, plus Haley's daily drama about something and it's a wonder I haven't ran for the hills yet. Thank goodness for good ganja.

Just kidding. I wouldn't know how to smoke it if you gave me a joint and a lighter.

That's it for now. I gotta finish up before the in-laws head downstairs to their temporary home for the next few weeks. I'll probably be posting here and at Riley's Blog as well, so forgive me for duplicates. In the meantime, hug your kids and keep Riley in your thoughts.

After the haircut

2008-11-02T23:16:00.000-08:00

Getting down to it

2008-11-02T16:58:00.000-08:00

Before the haircut

I just cut off all of Riley's hair. With a #2. Buzz-cut. He's so brave! He doesn't seem affected at all, hamming it up for us as I was buzzing away.

Me, on the other hand, was a little choked up. I know this is going down on Tuesday, but it's more concrete now. It's a trip looking at the countdown timer and seeing 2 days left on it.

For some people, 11/4 is going to be an important day. For our family, it'll be the most important day of our lives.

(was that melodramatic?)

Riley's Blog

More videos!

Look what Rye can do!

Yahooooo!

20/365

Riley gets NSMBWii!!

Chicken dance

Slippery!

Good news for Rye!

10 funny things about Rye

One year ago!

Up!

Patience

Ouch!

Sick at home...

Who knew?

More stuff about Rye

As promised, pictures, almost a month later!

Today is Riley's 5th birthday!

Riley in the sand

Riley and Marci on KING 5!

Me taking a picture of Riley taking a picture of Bella

An Update!

Dancing at the Animal Kingdom!

Collage time

Pictures from our trip!

We are back!

Dr. Seuss merry go round

Bright and bushytailed

On the ground!

Waiting for Shuttle Express

And we're off!

Riley and dessert

Riley's MAW lunch at Maggiano's

Look! Up in the sky!

Head, Shoulders, Knees & Toes

Speech time

New 'do!

Make A Wish with Riley

Boy's time with Riley

Working hard at Goldberg's

Did someone say 3D?

Monsters Vs. Aliens

Happy March

Complete madness!

Riley's scars

IMG00178.jpg

Firetruck sweaters make me think too much

Thoughts

Who wants a Riley update?

In trouble and self-soothing

Welcome to Riley's Blog

Letter to Riley

Riley's moustache

It's Christmas time

Fun in the meager snow

Snow for Riley

Xmas shopping with Rye

Quick update

Wow! Good news!

What is different here?

Playing cars with Riley

All clear for take off!

Back to normal?

Road to recovery

Dinner time

Relaxing with Papa

Home sweet home

Home at last!!

Heading home!

Outside!

Leave Riley a comment!

Feeling better after pizza

An interesting developement

Sad little dude

Playing with Riley

Latest on Riley

Riley's new room

Out of the ICU

Eating food