Monday, June 30, 2008

The Life of Riley

Riley was born in August, 2004. He was delivered via C-section and everything was good. We brought him home and things were great.

As Rye got older, especially to the age when we thought he should be sleeping through the night, he didn't. But that wasn't much cause for alarm or anything. We dealt with it the best we could and did our thing.

I remember having epic battles with Riley when he was 1.5 to 2 years old. He was mobile (walking) and for some reason, able to climb out of his crib, so we had gotten him a twin bed. When it was bedtime, he'd climb out of bed, open the door and pester us to no end. We switched the doorknob to lock it from the outside and he'd just beat and pound on it until he'd pass out on the floor in exhaustion. He'd wake up the next day with carpet marks on his cheek, but otherwise be pretty good.

For me, especially, I had a hard time with Riley. He was/is a total mama's boy and simply wouldn't take to me. In the middle of the night, I'd try to help if he'd wake, if only to let Marci sleep, but would make it worse as Riley wouldn't want me, and I'd get mad when he'd wake Marci up anyway. And then, my anger would be directed at her. It was completely lame.

I simply couldn't figure Riley out. He'd wake several times a night. He'd only answer to Marci. He'd ignore me or flat out refuse to listen to me. And he was only 2. I was terribly frustrated.

As he got older, we started noticing little things that seemed off. For the most part, he was and is a pretty normal boy. But things like swallowing and drooling, things he should have mastered by 2 or so, he didn't do well. He had a hard time getting dressed and undressed. He talked funny. We've had him in speech for his nasal emissions (when he makes an "S" sound, it comes from his nose). Most of the stuff, we figured he was just young and would grow out of.

Marci really took charge with getting Riley checked out. I would just ignorantly roll my eyes and expect that he'd get better with time. As we saw some doctors, it was brought to our attention that he needed to be on fluids that were honey-thick. So, as a result, Riley has to have special "water" prepared, where we mix a few ounces of liquid with a thickener. He can't drink it in a regular cup or straw and has to drink it in a sippy cup. We found out later that he had large tonsils, so we ended up having those removed about 2 years ago.

These days, Riley is on an inhaler, nasal spray, and a pill. What they do, I couldn't really tell you, but I think they have to do with allergies (he is prone to sinus infections) and breathing. He has to carry these sippy cups everywhere he goes, which, at almost 4, is heartbreaking. The poor guy can't even get a drink from a water fountain if he's thirsty (well, he can, but it aspirates in his throat and makes him all gurgly) and, in talking to him yesterday, he told me he wishes he could drink regular water.

As far a behavior goes, Riley seems pretty normal to me. He and I have made a lot of progress. He is very eager to please and is a super loving little dude. We have a great time with Legos and video games and he is a lot of fun to be around. He's my "best buddy" and though we still have our differences at times, it's nowhere near what it used to be.

Last week, Riley went in for an MRI. On our way down to California, Marci took a call from our pediatrician who had examined Riley's test results.

After a bunch of doctor-speak, we were told that Riley shows signs of Arnold-Chiari malformation. In a nutshell, Riley's brain is too big for his skull, or, conversely, his skull is too small for his brain. His brain hangs out of the base of his skull by 3.5 centimeters. Because of this, there is pressure back there, which can cause symptoms like headaches, swallowing problems, speech issues, fine-motor problems, among other things. Basically, all the symptoms Riley has fall within the realm of ACM.

This was a bombshell to us. For years, people have told us that he was fine, that he'd grow out of it, that he'd be a "great sword swallower" (for real!), and we'd go home and get frustrated. I don't think we were looking for something to be "wrong" with Riley, and at times it felt like he was fine, but then we'd see that he couldn't do what other 3 year olds could do and wonder what was up.

So, as luck would have it, Marci's best friend's dad is a neurosurgeon, and when he was told that Rye was diagnosed with ACM, he said he'd take a look. We happened to be on our way to California, where they live, and all the stars aligned.

Yesterday, at Dave and Nadejda's house, we had dinner and all was good. Dr. Cyrus came over later (I had completely forgotten about his visit) and we sat down with him to chat. He took a look at Riley's MRI and told us that things looked good. He confirmed that ACM was a good diagnosis and said that it wasn't as bad as he thought (based on his gut feeling initally). He spent the first half hour or so telling us about how ACM works, how it can generate cysts (of which Riley has a few) that press along the spinal column, and how those pressures can cause the problems that Riley has*.

*This is my synopsis of what he said. It's paraphrased and a better description can be found via Google.

Dr. Cyrus then proceeded to mention how we might be able to help Riley and what we should do until he gets looked at again. One thing we have to do now is discourage Riley from hanging upside-down or standing on his head. More recently, Riley has been doing both of those a lot. According to Dr. C, if Riley was to fall on his head, it could "crunch" his head down further onto his spine (it's already pretty tight, hence the warning) and cause more, or worse, problems.

(I talked to Riley this morning and asked him why he liked to be upside-down all the time. I tried to ask him non-leading questions. He said something that was unclear and pointed to the back of his neck. I asked how it felt on his neck. He said, "Hard elephant." I asked how it felt to be upside-down and he said, "Soft monkey." It was weird, but I felt like I made some sort of discovery.)

After that, Dr. C went and watched Riley play for a few minutes. He proceeded to ask Marci if Riley spoke through his nose (the aforementioned nasal emissions) and Marci's jaw just dropped. The fact that Dr. C was able to bring that up without it being told to him was a total surprise, and, I think, validated a lot of what Marci's been telling the "specialists". Dr. C told us that he'd recommend we wait until Riley matured a little and see if his body would grow into better shape. He also suggested perhaps a cervical collar (neck brace) to work on stretching his neck out a little. These are all things we're going to have checked when we get back to Seattle, of course, but hearing it from Dr. C was definitely good.

So, what does this all mean? Well, for one, we are keeping a closer eye on Riley, especially when it comes to him on his head, etc. We've taken to having him ask us if he needs to be upside-down and then holding him upside-down, carefully, of course. It makes me wonder about things I'd done with him in the past, like rough-housing, or, in fits of anger when he was younger, tossing him onto his bed.

I mean, for now, he is how he is and I love him dearly. I want him to be better in a real bad way. I got a little emotional on the drive yesterday when I was telling Marci about how Riley told me he wants to be able to drink normal water. Something that I take for granted, I never thought Riley even cared about it, but, of course, he does.

I guess until we get back to WA, it's going to be one day at a time. While we're in CA, we'll enjoy ourselves, research ACM, and do our thing. If anything, it will make things interesting for our immediate future.