Bella

Yesterday I saw a post in here that was of me taking a picture of Bella and I decided to do an update on her so here it is. Bella is doing fine she limps on her leg sometimes after she sprints after bunny's but other than that she is fine. Bella is 7 years old. She loves going on walks and doing anything active.
Yeah, that pretty much sums up Bella!

TAKE OVER

I am now taking over this blog from my dad. After all it is called Riley's Blog so it seems right that riley should run it right?

Hi everyone

That was weird.

I just logged onto Riley's blog for the first time in years. Quick update: he is alive and well! He is in 6th grade, taking French, playing trombone, and just being a regular boy.

As I logged on here just now, I saw 3 posts from someone that wasn't me. Evidently there were different links on each post. I didn't click on any and I hope you didn't either. I've deleted those posts and this post is definitely legit!

My plan for these blogs was to have them for reminiscing, but also to hand to Riley (or Haley) as they got older, if they wanted them, to write stuff. Riley is quite into computers now and maybe he'll want to post something or edit the blog or something.

Anyway, that's it. Maybe we'll post more in the future, or maybe we won't, but for the few that check here, he's doing great. The chiari is pretty much a thing of the past. He got a green light from Dr. E a year or so ago and we haven't looked back. Just a normal boy now, and life is good.

NORAD Tracks Santa

guys, check this out. You can download it.

 

Love, Dad

 

Sent from Windows Mail

 

More videos!

Look what Rye can do!

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

Yahooooo!

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20/365

20/365
Originally uploaded by gwonchang

Riley gets NSMBWii!!

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

Chicken dance

Chicken dance
Originally uploaded by gwonchang

Cluck, cluck.

Slippery!

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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.

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.

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!!

Up!

Up!
Originally uploaded by gwonchang

Riley's great in the yard!

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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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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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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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!