Thursday, October 30, 2008

Riley's hospital plan

Before going in for surgery, the doctors and nurses have asked Riley to come up with a plan so his stay is as comfortable as possible. Marci interviewed him this morning and this is what she came up with.
• I will bring my doctor bear and truck blanket to surgery.
• My mommy will be with me on surgery day.
• I would like Mommy there (if possible) when I go to sleep. If I can not have mommy, I would like to have my bear and listen to my music player (mp3 player) while I go to sleep.
• I want mommy with me as much as I can while I am at the hospital.
• I would like no shots or pokes while I am awake if possible. If I need to have shots or needles while awake I want the medicine that makes me not so scared or medicine to numb the area where the poke is going in.
• While I am waiting for my surgery I want to watch t.v. and play games with mommy and daddy. (Candyland and Chutes & Ladders provided by a Child Life Specialist) If there is a Nintendo DS floating around I would love to play with that.
• When I am in pain I will try to use the faces to tell people how I feel but I will tell my mommy too.
• A few things about Riley: I like monkeys, video games, ladybugs, cars, rockets and want to play hockey some day. My favorite foods are macaroni & cheese, cheesy eggs, smoothies and chocolate.
• While I am in the hospital, if I am not able to go to the play room if someone could come play with me for a bit so my parents can have a break that would be great.
• Some other things to know about Riley: his liquids need to be honey thick, he is a very smart and compassionate little boy, he knows lots of words but it is often difficult to understand him.
Hockey? Who knew?

Wednesday, October 29, 2008

It all goes down in one week

And I don't mean the election.

One week from now, Riley's going to be a little uncomfortable. He'll have a few new incisions on his head and he'll probably be all drugged out. Haley will be at home with the grandparents and Marci and I will be at the hospital with Rye, keeping each other company and keeping an eye on our son. Over the next few days, he'll start healing and we'll be able to bring him home soon after.

At home, we'll keep him as mellow as possible, pumping him full of videos, shows, games and the like. The doctor has ordered us to keep him still so his head can heal. Otherwise, if he disturbs the stitches, who knows what might happen.

Of course, this is all dependent on Riley not catching a cold or anything prior to next Tuesday. So far, so good (KNOCK ON ALL THE WOOD IN THE HOUSE AND NEIGHBORHOOD). Though, ironically, the one time a year I get sick happens to be right now. But it's not too bad. It's a little congestion in the morning and some coughing throughout the day. I do need to keep away from Rye a little, but I think we're doing ok with it. Marci's been giving me Lysol showers and bleaching my clothes and towels (not really).

So, this, is weighing on all of us. I suppose we're stressing just a little, but it hasn't quite hit full force yet. I'm pretty sure things will be fine, but it's brain surgery on my four-year-old son. This kind of stuff isn't supposed to happen to us!

Anyway, keep us in your thoughts. Riley's a cool kid. You should meet him sometime!

Monday, October 20, 2008

Both eyes

Right eye

Left eye

Riley and the Great Pumpkin.

Random Riley thoughts

Riley is sound asleep and I am in love with this little guy. He is so much fun to be around, even when he's not being so fun. He's got his little stuffed monkey in his arm and is lightly snoring away right now.

Every morning I get to spend a few minutes with just he and I as Marci takes Haley to school. He crawls in bed with me and scratches my back for a little bit. I ask him what he wants for breakfast. He always asks me, "What is there?" even though he knows it was the same as before. Or, he'll say, "I need to fink about it."

Once he decides what he wants, he'll let me know. A lot of the time, it's cheesy eggs (scrambled eggs with some cheddar thrown in), but the way he says it cracks me up. Cheesy = chee-zee to most people. When Riley says it, it's chee-see. It's subtle, but it's funny.

After surgery, we'll see how it goes. For now, our main concern is getting rid of the aspiration in his throat. With his speech and fine motor skills, we can help him learn ways to adapt. We can't teach him how to drink or swallow differently.

His teachers at school, Ms. Nia and Ms. "Wooshi" (how he pronounces it. I have no idea what her name really is), say Riley is really bright. I'll ask him what he learned at school and he'll say, "Nofing. I already know everyfing!" I used to think he was joking, but Marci's talked to his teachers and they think he's pretty much at a K-1 level, rather than a pre-K level.

Brilliant, I tell you!

Anyway, I'm not terribly nervous or stressed out about his surgery yet. It's only 2 weeks from tomorrow, and I'm sure I'll feel it a bit then, but for now, it's just business as usual. We do have to be a little more diligent about hand washing and germs, as any sickness will cause his surgery to be postponed.

I took some pictures with my fancy new Blackberry, so I'll try to get them posted. Then you can see how funny this dude is.

See you later.

Saturday, October 11, 2008

"Boy's Only" time

Me and Riley got to hang out for most of the morning. He and I ran some errands and just goofed around. We went to every boy's favorite toy store (Best Buy) and played Rock Band for all to see (one person). We hit the mall and had McDonald's (I had a salad, btw). I watched him play cars by himself this morning at home.

It's always fun to watch Rye when he doesn't know I'm watching. All the frustrations I might have seem to disappear when I get to see him just being him. It's very sweet.

When we got home, I asked if he wanted to ride his bike without training wheels. He wanted to, so off came the wheels. He was able to ride short distances in a straight line without me. I think he'll be on two wheels anytime now (weather permitting). Keep your fingers crossed.

Saturday, October 4, 2008

One month to go

Not much new to report, other than Riley is suffering through his second sinus infection of the season.

Yay Mucus!

We started him on new meds today, so with any luck, he'll be through this in the next 10 days or so. Hopefully this is the last one before the surgery.

In other news, Riley has started school. He's been having a great time. It's fun putting him on the bus, and picking him up as well. He usually is sacked out when Marci picks him up at the bus stop. I've picked him up once and it was pretty funny.

Otherwise, it's business as usual these days.