Saturday, December 26, 2009
Wednesday, December 16, 2009
Tuesday, December 8, 2009
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?
Monday, November 23, 2009
- 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.
Tuesday, November 3, 2009
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
Friday, October 9, 2009
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.
Sent via BlackBerry from T-Mobile
Thursday, October 1, 2009
Thursday, September 24, 2009
Thursday, September 10, 2009
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!
Thursday, August 20, 2009
Wednesday, June 17, 2009
Tuesday, June 16, 2009
Monday, June 8, 2009
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, April 24, 2009
Saturday, April 18, 2009
Friday, April 17, 2009
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
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!
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
Tuesday, March 24, 2009
Wednesday, March 18, 2009
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.
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.
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.
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.
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.
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.
Sunday, March 15, 2009
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.
Friday, March 6, 2009
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.
Monday, March 2, 2009
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.