Sunday, August 31, 2008
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
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: http://www.flickr.com/photos/gwonchang/
Monday, August 25, 2008
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
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
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
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
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.
Friday, August 15, 2008
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.
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
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.
Wednesday, August 13, 2008
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.
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
*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)
Vocal cord paralysis
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.
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.