Wednesday, December 31, 2008

Welcome to Riley's Blog

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.

Wednesday, December 24, 2008

Letter to Riley

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.

Monday, December 22, 2008

Sunday, December 21, 2008

It's Christmas time

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.

Saturday, December 13, 2008

Sunday, December 7, 2008

Quick update

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.

Wednesday, November 26, 2008

Wow! Good news!

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 I just took a look and got all choked up for some reason. Weird.

Yay Riley!!!

What is different here?

Sent via BlackBerry from T-Mobile

Saturday, November 22, 2008

Playing cars with Riley

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

Tuesday, November 18, 2008

All clear for take off!

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.

Saturday, November 15, 2008

Back to normal?

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.

Tuesday, November 11, 2008

Road to recovery

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.

Monday, November 10, 2008

Sunday, November 9, 2008

Relaxing with Papa

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.

Saturday, November 8, 2008

Home sweet home

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!!

Heading home!


Friday, November 7, 2008

Leave Riley a comment!

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!


Feeling better after pizza

An interesting developement

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

Thursday, November 6, 2008

Playing with Riley

Latest on Riley

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.

Wednesday, November 5, 2008

Riley's new room

Out of the ICU

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

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

Laying in bed with Rye

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.


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.

Tuesday, November 4, 2008

Riley's Surgery

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.


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!

Playing (trying to!) the DS.

Riley back in bed

Riley and Marci

In his room now

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

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!


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!

Sun, glorious sun!

I just noticed

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

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

Cafeteria food

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!

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!

Monday, November 3, 2008

There's no turning back now

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.

Sunday, November 2, 2008

More thoughts

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

Getting down to it

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?)

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.

Saturday, September 13, 2008

Riley is hurting

It's 10:43 and Riley is still up. With Dad's passing, Riley knows something's different. He hadn't cried or anything indicating that he fully comprehends it, until now.

A little earlier tonight, Riley asked me, "Why did Tai Yeh die?"

Questions like that from the kids immediately get me going. Luckily it was dark in his room. I said, "Because he was very sick and his body got really tired." I told him, "You can always talk to me about Tai Yeh. I can tell you stories and we can talk to him together." I left him and Marci went in to see him shortly after.

I was downstairs and Marci came in wet-eyed, saying that Riley was sad that his Tai Yeh was gone, and that he was gone forever. He seemed to understand that that meant he'd never see him again. Marci told him to tell Tai Yeh his Knock Knock jokes, so he did. We heard him over the monitor babbling to himself, cracking himself up. Then we heard him crying, but we could tell it wasn't his run of the mill cry.

We went upstairs and he was crying, saying he really missed Tai Yeh. I immediately lost it and said I missed him. Marci piled on and she was crying too and we just all cried in Riley's bed for a minute.

Marci had changed her computer desktop to a picture taken last year of Tai Yeh holding Riley. I told Riley I had something that would make him happy and brought him out here to see that picture. We then went through the computer and looked at all the pix of Dad that we had. That seemed to make Rye feel better. We held him and we all calmed down. Then, out of nowhere, he yelled, "I CAN'T HELP IT!" and started crying again. It was so dramatic that it was funny, but our little boy is heartbroken.

Marci scooped him up and took him to our bedroom and held him for a minute. They came out and we all went on the deck to look up at the stars to see if we could see Dad sending any shooting kisses to us. He says he saw one, so I'll be happy for that. I told Rye about seeing a deer by Mom and Dad's house last night, and how Marci and I thought that was Dad's spirit visiting us. He thought that was cool.

I had no idea Riley would be as affected as he showed tonight. I thought he was too young and would just wonder why we were all sad and happy seeing family for the past few days. I thought he was just exhausted from playing with his cousins all day. But, he voiced his feelings to Marci and I, and for that, I am grateful.

My dad really touched those kids and I am thankful for every moment we were able to spend with him. We made an extra effort the past year to go see him and Mom as much as we could, and even so, we didn't get up there nearly enough.

It pains me more now that though Riley did get to see Dad one last time last Saturday, he didn't get to see him again after that, and now, Dad's gone. Rye will get to see Tai Yeh again in a few days, but Tai Yeh will be "sleeping" and I'm sure Riley will be a little confused.

Ah, Dad... we miss you so!

And Riley's asleep now.

Thursday, September 11, 2008

Shooting kisses

Riley's grandfather passed away last night. I woke him up today to break the news to him. I told him that Tai Yeh (his grandfather) went to the hospital last night and didn't get better. I said Tai Yeh is gone.

Marci said that he'd see Tai Yeh in his heart and head. Riley then pointed to the sky and said, "I'll see him shooting kisses," with a big smile on his face.

He was recently read a book about grandparents and their passings and I suppose that was how death was explained.

Sunday, September 7, 2008

Nothing new to report

We have had Bonus Summer as a result of the teachers' strike. Marci's kept the kids busy at the park and with friends. Thankfully the weather has cooperated, otherwise I might have 3 people at each other's throats every afternoon when I get home from work.

Rye got checked out again last week as a follow up to his sinus infection. Sure enough, it was still there, so he's on another week's dose of the antibiotic. We figured as much. He was kind of stinky.

Otherwise, he's just been a kick in the pants. For all the grief he gave me from age 1 to age 2.5, he's been just as good the opposite way since. Does that make sense?

The kid is a crack up.

Sunday, August 31, 2008


We were at a friend's party yesterday and Riley and I played some croquet. I asked him if he knew what the game was called.

He said, "Croquet."

Impressed, I said, "How did you know that?"

He said matter-of-factly, "Because I know everything!"

It's pretty funny. That's one of his standard responses these days. We ask him how he knows something, he says because he knows everything. He's a smart dude.

Thursday, August 28, 2008

Pictures and school

Riley got a camera for his birthday. He's been quite the shutterbug with it. His favorite subject?


He's been taking pictures of everyone's rear end. Though, if you think about it, it makes sense. That's what he sees!

Anyway, I'll put some of those up when I get home. It's fun to see what he sees. His feet are a common subject as well.

Tomorrow we get to visit his new school and meet his teacher. He's really excited about that. Me? I'm excited about him starting school, but the whole "riding the bus by himself" thing is making me a little nervous. I think he'll be ok with it; it's mainly me and Marci that'll be big babies about it. Maybe he'll comfort us...

More of Riley's pictures here:

Monday, August 25, 2008

Medications. Ugh.

Every morning before brushing teeth, we give Riley his medicine. Usually, it's his "chewy pill", a nasal spray, and an inhaler. Those are to help with his allergies and things like that. I suppose they help, but in reality, I have no idea what they're for. We just had a well visit and we're hoping that the doctor will tell us he doesn't need some or all of them any more.

Anyway, these days, with his sinus infection, we've had to add an antibiotic on top of everything. Also, to keep him as sickness-free as possible, we've started giving him vitamins to try to stave off any bad germs. So, basically, before Riley's started his day, he's taken 5 medications.

It's kind of depressing. Our little dude should be healthy! He shouldn't need to take meds. I guess the good news is he doesn't question it; it's part of his routine and he'll remind us if he doesn't get the medicine. Ideally, of course, he's on no medicines. Hopefully we're able to take him off them now, or as a result of the surgery. Right now, I don't know if the issues he has are because of the CM or what.

Wednesday, August 20, 2008

Riley's MRI pictures

These two pictures are what told the doctors that Riley has Chiari Malformation. I've done some edits with the pictures to show what the doctors told us. I may have the brain stem picture incorrect, but maybe Marci can clear things up.

Happy Birthday Riley!!

My man Riley turns 4 today. It's kind of funny. 4 years ago, we were able to pick a day on which we wanted Riley to be born as he was a planned C-section. Because Marci was of "advanced" maternal age, we had to keep a close relationship with our OB/GYN. Because of some health issues, it was decided to have Riley via C rather than via V.

I remember that summer was pretty dang hot. Like last week, only for longer periods of time. My father-in-law, Ted, was in town with us for several weeks as Marci was on bed rest and not allowed to do anything but grow a baby. It was great having Ted here. Marci and Haley got some much needed grandparent time and I was able to work without worrying about Marci staying off her feet.

Anyway, Rye was plucked from the womb in the am sometime and I remember he cried quite vehemently, as if he didn't want to be plucked from the womb yet. Little did we know what we were in for...

As we got him home, Haley was super excited about her little bro. She never developed the jealous sibling thing; rather, she loved being with him and being his big sis.

Throughout the years, it became more and more clear that Riley preferred his mother to me by a long shot. We had SO MANY STRUGGLES with bedtimes and separation. Even as recently as a year ago, Riley and I (can I really blame him? He was barely 3!) were fighting nearly every night. We'd have a good day, then, when it came time for bed, all heck would break loose. It was a horrible time for me, and for the family, I think.

Not only that, as Riley grew older, we (Marci, mainly) began realizing that he had certain issues. Most of them I've documented before, but suffice it to say, Riley's seen more doctors and specialists in his 4 years than I have in my entire life.

Thankfully his situation isn't dire. We know autistic kids, kids with deformities, kids with issues that make Riley's look like a walk in the park. So, for that, I suppose we are lucky. Doesn't mean I'm looking forward to his surgery, but you know what I mean.

What's been fun most recently is Riley is he's such an eager boy. He's funny and has a definite sense of humor. He has a lot of things he just LOVES, like Tom and Jerry cartoons, macaroni and cheese, monkeys, playing UNO, and his mom. He loves being with us, which can be annoying at times (sometimes you just want to be alone!), but seeing him shuffle down the hall in the morning for his hug is one of the highlights of my day.

I don't know what turned him around. He's finally able to sleep through the night and that has made a huge difference in our lives. He's finally to go to bed without fighting us (though I think that has more to do with us figuring him out than anything else).

I love Riley how he is now. I love how he talks. It's so cute and endearing, but, ultimately, that's a selfish thing for me. I know that to go through his life with nasal emissions and mispronounced words will lead to heartache and anguish for him, so getting that "fixed" is high on our list of things to do. Throw in giving him the ability to drink water, or use scissors, or not have sinus infections anymore and it makes his surgery a (no pun intended) no-brainer.

I know he'll be a more functional little dude when this is all over. I am excited to share a root beer with him. That excites him quite a bit. He's aware of what's going on and, so far, he doesn't seem worried.

This has been a pretty rambling post. I wanted to celebrate Riley's 4th birthday and I guess I just started rambling. He's super-excited and is so cute when he holds up his 4 fingers to show how old he's going to be. A year from now, he'll be 5 and we'll be talking about how he's about to head off to kindergarten. That's pretty incredible.

And I'm turning into a big sap.

Now Mommy's turn to be a little sappy.....

Happy Birthday Little man! You are such a sweet boy and I am so proud of you. Daddy said it well so I don't have much to add. But, I do want to say you and your sister bring much happiness to my life. I admire your joy and how hard you work at everything.
I love you and can't wait to see what the next year brings!

Tuesday, August 19, 2008

Getting older and moving on

Riley will be attending school in a month or so. It's in town, but will require a bus ride. For the past 2 years, the preschools Rye has attended have also featured Marci. She worked at the Y and Rye was there, so he always had that in his back pocket.

For those that don't know, Riley is a bit of a momma's boy. Marci gives him comfort and security that others can't.

When he starts school, the first big change is that Rye will have to get on a bus. By himself. Just the thought of that makes me feel weird. I don't know if sad is the word, or what, but envisioning my little Rye on the bus with none of his friends or family is a little unsettling. Add in the fact that everyone will be new to him and probably won't understand him and it makes me more anxious.

Just imagine how Marci will feel!

I know it's all part of him growing up, I suppose, but now that I think about it, cutting the umbilical cord will be hard for me too!

This school will be good for Riley. It's not your regular pre-school. They will work with him on his speech and fine motor, as well as other things. Even though he won't know any of the students or staff (which he would if he went to the Y), the one-on-one time will be very beneficial to him.

Our hope is to have him start school, have the decompression surgery, then return to school to learn what he needs to learn. After next summer, he could be ready for kindergarten if we decide to have him start! Wow!

Monday, August 18, 2008

Doctor's appointment today

Rye slept like a log last night. He's been having a fever anywhere from 99 to 101 or so the past few days. The only reason we hadn't taken him to the doctor is because we (ok, Marci) had already made an appointment for both kids to get checked out today.

Anyway, Riley woke up about 8:45, which is about 1:15 later than usual. He was a little lethargic, but that was to be expected. What's funny is as much as he might feel funny, he kind of "works" it so he gets extra hugs and love. He'll shuffle around and make a pouty face, stick his arms out and attach himself to whomever happens to be around. It works, too. We all end up giving him lots of hugs and attention.

Today, the weather has done a 180. It's dark and cool, breezy and moist. Looking out the window, it looks like might rain at any minute. Marci and the kids will be heading off to the doctor soon. After that, it's swim lessons. My guess is Riley won't participate in that. It's too bad, too. He loves to swim though swimming in this kind of weather isn't so much fun.

My guess is we're going to have to put Riley back on amoxicillin again to clear up the infection. Hopefully this is the last time before November.

Sunday, August 17, 2008

Sinus infections

Riley is susceptible to sinus infections with this Chiari thing. He's had numerous throughout his life. He's in the middle of one right now. Add a fever to that and factor in 90+ temps and you'd think he'd be miserable, right?

He actually deals with it really well. Though this morning he's a bit whiny. I think it's finally catching up to him. We're gonna lay low today and hang out I think.

More later.

Friday, August 15, 2008

Evening update

After a really lame spring where it was cold, frosty and wet, summer has been pretty good to us lately. Today it was 90+ or so, though I haven't seen any real readouts.

It's 8:45pm right now and after going out to dinner, we're putting the kids down. Riley is hot to the touch, but he's not sweating, even though it's about 80 in the house. Marci just took his temp and he's at 101.5, so we're gonna try to hydrate him a little.

He's been complaining of tummy aches. Marci told me he was saying he felt shocks today, like someone was zapping him with static electricity. Evidently these are both symptoms of his condition. The trouble is we don't know if he's getting worse by the day or if it's just a weird coincidence.

I guess he has a well visit with his pediatrician on Monday, so hopefully she can shed some light on things.

This dude is a crack up. He's next to me now in his shorts and no shirt, with his little buzz cut I gave him yesterday, clutching his little blue cup/bottle and just being a funny dude. I sure hope we can help him get better and on the road to recovery.

New Surgery date!

Since 11/11 is a holiday Riley's surgery has be rescheduled to 11/4. I also learned today that it will be about 4 hours long.
So, unless he gets sick at all 11/4 is the day. We don't want him to get anything or they will cancel and reschedule the surgery. He is starting to complain everyday of pain so, I just want to get on with this and not have any delays.
I know I will be very vigilant about germs the couple of weeks before surgery andI will bug everyone! (no pun intended) :)

Thursday, August 14, 2008

Date update for surgery

Well, as it turns out, 11/11 is Veteran's Day, and banks will be closed.

Apparently, doctors don't operate on 11/11 either. Whether or not the hospital closes on 11/11 remains to be seen.

So now we need to reschedule. Luckily 11/4 and 11/18 are good options for us. Only 11/25 is a no-no.

We'll update when we know more.

More symptoms?

Riley woke this morning and he had a few big hives on his body. One group by his belly button, some on his shoulders and upper back. He gets them fairly frequently and we don't know if it's related to the Chiari/Syringomyelia or not. What we do know is that it's frustrating.

Wednesday, August 13, 2008

Decompression Surgical Procedure

On 11/11, Riley will undergo surgery at the hand of Dr. Richard Ellenbogen. The surgery is called "decompression" and is described at the University of Washington website. Take a look:

Where are we at now?

Well, we have scheduled surgery. It is going to happen on Veteran's Day, November 11th. Apparently Dr. E only operates on Tuesdays, and, according to my dad, ever the prognosticator, 11/11 was the best option.

Riley is still the same kid he was prior to the diagnosis 1.5 months ago. There are things, though, that we are discouraging him from doing. One thing was standing on his head.

Before finding out, Riley was always wanting to stand on his head. Marci and I thought nothing of it. Heck, there was one time I had him stand on his head and I fed him a cracker to show him food would get to his stomach, even upside down! We figured he was a 3.5 year old and enjoyed being upside down.

Well, after the diagnosis, that became a no-no. In talking to Rye, he told me that he did it because, in his words, it felt like a "soft monkey" when he was upside down. Evidently he did it to make himself feel better. We never thought of asking him why he did it before the diagnosis.

These days, Marci and I just keep a closer eye on what he's doing. We can't keep him from accidents, etc, but we do say no to somersaults and things like that.

Riley is still funny, happy, smart little Riley. He's really observant of his surroundings and has a memory like a steel trap, especially if it's about ice cream. Don't even mention it, unless you plan on delivering, 'cause he'll call you on it!

He's aware that he has some "owies" (I hate that word! It's not real!) on the back of his head and we've told him that he's going to have something done to him in the future. Don't know if he quite grasps it, though.

He's very interested in being able to drink like everyone else. Right now, it's Propel (powdered flavored mix) and Simply Thick pretty much all the time. Unless we get him a Jamba Juice or something similar (it's gotta be thick!).

You wouldn't think it's that big a deal, and to us, I suppose it isn't. We're used to carrying around a lunchbox with premade drink for Rye. But now, we realize that it sucks. It sucks bad. It's no fun to have to bring that crap around everywhere we go. It's no fun to forget it and realize that Riley has nothing to drink for the day.

Now, it's not like if he's dying of thirst and we leave his drinks at home that he can't have anything. We'll keep him alive by hydrating him, sure. But the problem is that he aspirates (the liquid goes into his lungs) and it makes him sound gurgly like he has loogies all day long. Plus, he can get infected as a result. So, all around, it's pretty lame.

Anyway, in the interest of brevity, that's it. Check back later for more.

Chiari and Syringomyelia Symptoms

When we found out about Rye having Chiari and syringomyelia and saw the list of symptoms associated with it, well, it was pretty incredible. Take a look at this (taken from I'm going to put stars (*) next to each symptom Riley has had:
Symptoms of syringomyelia and Chiari are numerous and varied and may present in a number of different combinations. This list is not inclusive and does not suggest a diagnosis of syringomyelia or Chiari. See a qualified medical professional for proper diagnosis and treatment.


*Headaches and chronic pain (Riley does complain from headaches from time to time. He also says he gets tummy aches)
Loss of sensitivity, especially to hot and cold
*Muscle weakness and spasticity (Riley has lax facial tone in his cheeks. He's also pretty floppy at times)
Numbness in hands and feet
*Motor impairment ("Impairment" might be too strong a word. He does lack the skill to do things a 4 year old should be able to do, though)
Loss of bowel and bladder control
Osteoporosis and scoliosis
Paralysis or quadriplegia


Severe head and neck pain

Headaches brought on by coughing, sneezing or straining

***Difficulty swallowing (Definitely. Riley used to drool constantly and still needs to be reminded to swallow at times. He currently drinks liquids mixed with Simply Thick, a gel that thickens liquids)

*Frequent gagging and choking (He had this more in the past but still happens occasionally)

Dizziness and vertigo

Balance problems

*Muscle weakness (See above in syringomyelia)

*Loss of fine motor skills (Same)

Poor hand coordination

Blurred or double vision

*Hypersensitivity to bright lights (He often complains of bright lights and the sun hurting his eyes. He very often asks for his sunglasses.)

Nystagmus (involuntary eye movements)

Difficulty in tracking objects

Tinnitus (buzzing or ringing in the ear)

Hearing loss

Vocal cord paralysis

Sleep apnea

What really blew our minds was that we finally had a concrete answer to go along with these issues Riley had. For years, really, the doctors figured there was something going on, but it wasn't until the MRI was done that we had any idea.

And thinking about it now, we're really quite lucky Marci was so adamant in getting an answer. If it were me, I probably would have bought into the "he'll grow out of it" explanation, and then, who knows? Maybe we would've never found out and Riley would've gotten progressively worse, until, as Dr. Ellenbogen said, he'd be in a wheelchair.

Ugh. It freaks me out just to think of that.

What we know so far*

*This is my recollection, interpretation and point of view on Riley's Chiari. Some may be inaccurate, but bear with me. I'm learning along with everyone else.

Riley has Chiari Malformation, stage 1. In a nutshell, as it was explained to us by Dr. Ellenbogen, his doctor at Children's Hospital, Riley has a size 10 brain in a size 9 skull.

Now, we all knew Riley had a big brain, but this is nuts!

Anyway, off the top of my head (no pun intended), Dr. E mentioned an analogy of a cork in a bottle. He said that the stem of Riley's brain is the cork and his spinal column is the bottle. What happens when a cork is in a bottle? Stoppage, of course. With Riley, his "cork" is resting within the "bottle", which is blocking the flow of whatever liquid needs to flow between his body and brain. In Rye's case, it's spinal fluid. As the fluid is blocked, cysts, or syrinxes, form within the spinal column (I think it's the column; I can't remember how Dr. E explained it exactly).

Riley has several cysts within his column. Unfortunately, they can only get worse. This is called syringomyelia. As they grow larger, the fluid flow can be blocked more, and the cysts themselves can put pressure on nerves and things like that. The trouble is, he is already exhibiting many symptoms that are directly related to the syrinxes.

For years, Riley's had some weird issues that, until about 6 months ago, we thought he'd grow out of. Difficulties with speech, difficulty swallowing liquids unless thickened, difficulty with fine motor motions (think holding scissors or eating utensils) were all experienced by Riley. All the specialists we'd see (and believe me, Marci took the kid to see a LOT of specialists!) would either say he'd grow out of it or they didn't know.

It wasn't until Marci finally told an ENT (ear/nose/throat specialist) that "I don't know" was an unacceptable answer that an MRI was finally ordered for Riley. This was mid-June of this year. A few days later, while we were driving to California for our summer vacation, the doctor called.

Anyway, if you want to read more about that, I wrote about it on my other blog.

I'll do my best to keep posts shorter as it's easier to write a short entry and easier for you to read.