In Which Connor Is Relentlessly Cheerful And Is Never Sleeping Again

Okay, this is getting sort of ridiculous.

Last night Connor stayed up until four in the morning. He wasn’t upset or anything; he just decided that he was not going to sleep. Period. He sang little songs to himself, warbled at the top of his lungs, and judging by the state of his socks in the morning spent a good portion of the time chewing on his feet.

I have never been the type of person who can stay up until four in the morning and then be just fine the next day, so I have absolutely no idea where Connor inherited this trait from because he was perfectly cheerful and cooperative at school today.  I, however, was not in the best of moods when the alarm went off this morning. I dropped him off and promptly attempted to go back to bed.

Unfortunately I’ve never been the type of person who can nap, either. Basically I spent an hour and twenty minutes lying in bed thinking about all of the things I should be doing other than lying in bed for an hour and twenty minutes. So not only did I not get any of those things done, but I didn’t get any sleep either. I finally got up when it was obvious that sleep was not forthcoming and went to see if I could get a local coffee shop to inject caffeine directly into my bloodstream, as that was about the only way I was going to get through the day.

Thinking Connor was going to absolutely crash at nap time, I went ahead and canceled his speech therapy.  I should have known better; he didn't go down for a nap at all.  Instead he laughed and sang to himself for an hour and a half until I gave up and went in to get him so we could run our errands.
 
One of those errands included a trip to the local department store, where I snagged a copy of Whip It on sale.  Whip It, for those of you who don't know, is a fictional movie directed by Drew Barrymore about roller derby.  I picked it up because since I started on my roller derby saga I can't tell you how many times I've been asked if I've seen "that derby movie with Ellen Page in it."  So I figure I might as well see it so people will stop telling me to watch it. 
 
Because I was so tired, after my sign language class I skipped my usual skating time (I'm skating four to six days a week-- I just don't talk about it every day because you all would probably get tired of hearing about it) and Connor's respite care worker came over.  Joanna just happens to be a medical massage therapist, and she set her table up in our living room and gave me a massage.  I'm apparently a wee bit tight, probably from the combination of lack of sleep and landing on various body parts repeatedly during skating practice.  Normally one massage session every month or so is enough to loosen me up, but I'm going to book her for some time next week instead, which should tell you just how stiff I really am!  I feel a whole lot better but there are definitely still a few kinks to work out.
 
And I'll probably have a few more by the time Joanna can fit me in again, because when she left around ten in the evening guess who was still awake?
 
~Jess

In Which Connor Goes Back To School

A deliriously happy Connor (or maybe just delirious, since he fell asleep at midnight last night) finally got to go back to school today!  He was so excited about it; he grinned from ear to ear all the way there in the car.  I was also deliriously happy about it, because that meant I got my daily break time back.  And you all know how much I love my break time.

I spent it most of it not cleaning the house and instead sitting in a coffee shop reading a book.  Because, you know, I could.

I saved the housecleaning for after Connor's school let out, which is when Joanna came over to do a little afternoon respite care for me.  So I whizzed around for a while with laundry and dishes.  I do the vast majority of my housecleaning on skates now, except for the mopping.  Trust me when I say that mopping on roller skates is a recipe for disaster. 

I spent the second half out with a book at a different coffee shop.  Because, you know, I could. 

So today wasn't terribly productive, but it was really nice and laid back.  Sometimes that's just what I need! Overall everything was pretty great except the part where Connor refused to nap.  Of course it is now almost midnight and he is still thoroughly awake.  I swear this kid must be running on some sort of alternative fuel by now, because the lack of sleep is starting to make me punchy and I need slightly less sleep than your average four year old.  I may spend tomorrow's school time doing another productive activity-- taking a nap of my own!  I'm not the world's best napper-- I tend to wake up more groggy than I was before I tried to take the nap-- but if Connor keeps this up I'm probably going to either have to learn or cultivate a serious caffeine addiction. 

Hopefully he'll adjust to his new medication dosage soon!

~Jess

In Which Connor Will Never Ever Go To Sleep Ever Again

So as of yesterday Connor has started on his new medication regime; he's now getting Lamictal three times a day and is off the Ativan.  We're hoping this is going to keep him seizure free.  He's gone ten days now without a seizure, which I'm sad to say is the longest he's gone without one for quite a while.  He's been having seizures entirely too often for my comfort level as of late. 

Anyway, so far so good-- Connor's body is adjusting well to the medication change for the most part, with one rather significant exception.  Last night he stayed up until around two in the morning.  The insomnia he's experienced every time we've up his Lamictal has come back in full force.  Currently it's 11:00 at night and he's still going strong.  I'm not sure how school is going to go tomorrow, but it may not be pleasant. 

I'm sure Connor's looking forward to getting back to school though; he's been out for over a week and a half now.  The little guy absolutely loves school, so he'll probably be pretty excited when we walk through the doors-- if he isn't completely zombified by lack of sleep, that is.  I'm probably going to spend at least part of my much-missed break time napping, as it is physically impossible for me to go to sleep while Connor is awake. 

Especially if Connor's bedtime is anything is like it was last night.  Sigh.

~Jess

In Which Connor Tries Out Skating Again, And I Attend A Party

Today Connor, Jeremy and I met some friends at our local roller rink for a couple hours of wheelchair skating! 

I was a little nervous about how Connor was going to react, because this was the first time I'd skated with him since I managed to run him down a ditch and into a blackberry bush.  But I shouldn't have worried, because Connor had a blast!  Possibly he realized that there were an astonishing lack of ditches and/or blackberry bushes in the rink, and that did the trick.  Or maybe it was because Daddy was there, and having Daddy involved in any experience automatically makes it about 800 times better in Connor's eyes.  At any rate, he spent the whole two hours with a huge grin on his face, waving to every single person he passed by. 

Jeremy tried out some roller blades to see how they would work on his feet.  He used to roller blade a lot and so he's very good on them even though his ankles and feet don't exactly function the way they did previously.  He said they felt "weird," but he skated almost the entire two hours.  He spent a lot of that time pushing Connor around the rink while I happily yelled at him for going too fast and reflected on just how lucky I was to have the both of them. 

So a good time was had by all.

After we got home I put Connor down for a nap and did some chores before getting dressed up to go to a housewarming party.  The theme was cocktail dresses and bowling shirts.  Since I didn't have a bowling shirt and-- due to a plethora of army functions over the past few years-- have multiple cocktail dresses, it was obvious what I was going to wear.  So I tried on a few before settling on one that I could still squeeze my hips into and then stopped by the store for a present.  Jeremy, who didn't have a cocktail dress or a bowling shirt and isn't much of a partygoer anyway, stayed home and watched the boy because he is awesome like that.

So I enjoyed myself for a couple of hours at the party and then swung by the house, grabbed my skates and was out the door again to meet a friend at the Adult Skate session going on at one of the rinks.  The session had already started by the time I made it home to get my gear, so I didn't change out of my dress because I was already running late.  Skating in a cocktail dress actually worked out pretty well-- I just pulled my socks and knee pads up over my nylons, pulled my hair back really quickly and stuck my helmet on over that, and I was off!  I didn't really even get too many weird looks-- it's a pretty diverse crowd at the skating rink, and I'm probably not the first person who's shown up there in a cocktail dress. 

At any rate, I stayed out entirely too late but had a blast!

~Jess

In Which We Have A Largely Unproductive Day

Today we thought we'd go out and see Mastermind as a family, but somehow I managed to get the movie time wrong.  Then we decided to pick up How To Train Your Dragon from the store (one of our favorites for its fantastic portrayal of disabilities), but they were sold out.  We didn't really want to brave the crowds to see if we could go find it anywhere else.

So we stopped by a coffee shop and then went home.

I'm starting the long, tedious process of photographing pretty much every object in our house so that we can use the pictures for Connor's iPad.  I didn't realize quite how many toys, pieces of furniture and pieces of medical equipment the little guy actually has until I started trying to catalogue them all.  And after that I still have to take pictures of all of his therapists, teachers, friends, family and pets. 

I think it's going to take me a while!

~Jess

Happy Thanksgiving!

Happy Thanksgiving to all of you-- hope it was a wonderful one!



In Which I Have An Interesting Encounter And Write A Really Short Blog Post Because I Am Tired

Yesterday I'd just gotten back to the house from my (very short) walk with Connor when there was a knock on the door.  I opened it to discover one of the neighbors I hadn't met yet waiting on the front porch with her dog-- she'd obviously been out for a walk too. 

"Hi!" she chirped, giving me a friendly grin.  "Is your mom home?"

I gave her a sort of stunned look.

Obviously thinking that I was a shy or perhaps sort of surly teenager, she tried again.  "Your mom-- is she home?" 

"Um," I replied in a very articulate fashion.  I was still kind of in shock.  Her grin faltered a little bit.

"Wait a second," she said, giving me a closer look.  "Are you mom?"

The contents of the ensuing conversation are unimportant for the purposes of this blog, but trust me when I say that the rest of it did not get any less awkward from that point on. 

I'd just dyed my hair the night before, which might have had something to do with it.  I'd dyed it because I now have large streaks of gray running through my formerly mouse-brown tresses.  I also have crow's feet.  Two years of frequent adrenaline rushes, little sleep and tons of stress have not done good things to my body, and by now I'm used to being mistaken for being a lot older than I really am.  So I was a little taken aback to be confused for someone closer to my future daughter's age (twelve) than my actual age (pushing thirty).

I'll have to remember which brand of dye-in-a-box I used.  This stuff is magic.   

~Jess

In Which Connor Says Good Night

So Connor and I spent pretty much the entire day inside today. That's because our neighborhood looked like this.

We did make an attempt to go for a walk in the snow. Connor's wheelchair is not really built for snow travel-- it really needed some skis! It was a pretty good arm workout for me, though. We slowly crunched down where I thought the sidewalk might be until we reached the park, where I decided it might be fun for Connor and I to try and make a snowman. I'd even brought a carrot with me just in case we found a likely spot for one and needed a nose!

Alas, our snowman was not to be. The snow didn't really want to pack well, and also I had to sacrifice my gloves because Connor quickly made his soaking wet once again. He has apparently decided that his gloves (and today, the rest of his clothing) are there for him to chew on. And when I say 'chew' I actually mean 'bite repeatedly,' as Connor doesn't seem to be able to move his jaw from side to side-- one of the major reasons why most of his nutrition is by g-tube. He's kind of in an oral stage right now; you can see him chomping away in this picture. So anyway, I ended up having to give him my gloves, which came up to his elbows and were apparently not as tasty. Snowmen are not fun to make without gloves in 18 degree weather though, so instead we turned around and slogged back home.

We spent the rest of the day indoors; I didn't really want to venture out and risk the wheelchair van on the icy roads. I wasn't concerned about my driving-- the van handles very well in rough weather. I was more concerned about all the little cars I'd watched fishtailing up and down our street all day. So we sat and played with the iPad for a while instead. Connor is newly in love with a program called Vocal Zoo. It's got a bunch of pictures of animals, and when you tap the picture the sound the animal makes plays. They have some really unconventional animals on there too, like the llama and the zebra. Mostly he likes to mash one animal over and over again. He particularly likes the ones with high-pitched, annoying calls.

We also played around with Proloquo2go for a while; it's the assistive communication program that was one of the main reasons we got the iPad for Connor. After some discussion, we programmed it to say "Good night Daddy. I love you!" and then I helped Connor push the button to play it for Jeremy when he got home.

Connor grinned and nodded after we pushed the button.

He's found a voice.

~Jess

In Which It Snows A Whole Whole Bunch, And Connor Is Not Happy

As I was turning onto our street when coming back home from derby practice tonight, a couple of guys on snowmobiles whizzed by me in the other direction.  That gives you some idea of what it looks like outside at the moment.

And yes, of course I went to derby practice in the snow.  I'm from Texas, remember?  This means that I have absolutely no idea how to drive in snow but I believe I can do pretty much anything, because people from Texas have natural roughin' it sort of abilities that make them superior to other people who don't know how to drive in the snow.  Also people from Texas drive really big SUVs with four wheel drive.  All those little efficient Smart Cars non-Texan people drive around here weren't doing so hot, even if they do all have sporty roof racks on them.

Anyway, so outside of our house we no longer have bushes, we have vaguely bush-shaped mounds of snow.  Loki escaped outside today and ran out into the middle of everything, sinking in approximately to his knees.  He made it to the middle of the front yard before he realized that something was very, very wrong.  Where was all the delicious grass to eat, which is why he'd run out there in the first place?  And what was this weird cold white stuff? 

I would like to point out that Loki encounters snow every year, because it takes me twice as long to get the door closed when I'm all bundled up and trying to stomp the snow off my boots before I come inside.  And he does the exact same thing every time.  I swear this cat has roughly the intelligence of a kumquat.

Anyway, so just like last year Loki decided that the proper way to deal with snow would be to jump straight up in a stiff-legged hop, perhaps figuring that he would be able to levitate above the snow and thus not get his feet wet.  When for some inexplicable reason this failed to work and he came down in exactly the same place in the snow, he decided that springing sideways would perhaps work better.

So in the end I had to wade out into the yard and rescue my crazy cat, who was desperately trying (and failing miserably) to defy the law of gravity and was simply managing to coat his entire underside with snow as well as leaving Loki-sized craters an impressive distance apart in the middle of my lawn.

Once I got him inside he of course immediately jumped up into my chair and shook himself, spraying the upholstery and everything else in a five foot radius with melting snow.  Then he demanded to be petted, like he'd done something I should be proud of him for.  He'd vanquished the hideous evil white stuff!  Now he deserved treats!

Sigh.

Connor was not overly thrilled about the snow either.  That is to say he was indifferent about the snow, but he was less than excited about missing school and he hated the hat and gloves I made him wear.  I played Fish The Glove Out Of The Snow Bank quite a bit today, and after a couple of hours between Connor chewing on them and throwing them in the snow there was no point in him wearing them because they were soaked through.  His fleece hat is one of those that fastens under the chin, because other than his yeti hat (which isn't warm enough for this weather) it's the only kind that wouldn't have been following the gloves over the side of the wheelchair.  But we needed to go out and get our dinner fixings for Thanksgiving, so he didn't have a choice about the hat.  Trust me when I say he made his opinion very clear on what he thought about that.

Oh well!  At least I've got the ham in the refrigerator now, so we shouldn't have to venture out tomorrow.  Unless I can't manage to keep Jeremy out of it and he eats it all before Thanksgiving.  It's a distinct possibility.

~Jess

In Which It Snows And Connor Receives A Really Pricey Electronic Piano

So today we woke up to big flakes tumbling out of the sky and promptly turned on the fire and pulled up a blind so Connor could see the magic of snow!

He wasn't very interested.  The cats were fascinated, though.

Then we did what everybody does on snow days.  We hopped in the car, drove to the mall and bought Connor an iPad. 

Okay, so maybe that's not what everybody does on snow days.  But that's what Connor did on his snow day, and he's really the only one who counts for anything as far as our household is concerned, so it might as well be everybody.  We've been doing research over the last few weeks to figure out exactly what we wanted to get him; we think the iPad could be a fantastic assistive communication device for him.

That is if we can get the darn kid to touch the thing.  Despite downloading all sorts of really cool apps for him, the only one he wants to play with is (surprise!) the piano simulator.  He'll pound on that piano all day, but if you try to get him to turn the page on a Dr. Seuss book he reacts like you are attempting to put his fingers in the paper shredder.  We'll keep working with him and hopefully he'll get there!  In the meantime, I've already downloaded a Mahjong app and a Thai Language course. 

Those are totally for Connor too.  Right.

The little guy did very well today.  I think he was happy to be home!  He was pretty snuggly but he seemed to be feeling good; I think he just was excited to not be spending the whole day in bed. 

We could get up to three inches of snow tomorrow, so we'll see whether or not Connor has school.  Nobody knows how to drive in the snow up here, so usually if we get over about an inch they shut everything down, which is probably good for me because I'm from Texas so I don't know how to drive in the snow either.  If that ends up being the case we'll hunker down in front of the fire, put the tea kettle on and listen to Connor play us a rousing, extremely loud tune for a few hours!

And then maybe we'll play Mahjong.

~Jess

In Which Connor Spends A Bunch Of Time In The PICU, And I Am Nearly Driven Insane By A Dancing Pig

Well that was not particularly fun.

Wednesday Jeremy left for a three day trip to West Point for work.  You will recall from the Yeti Incident that Connor has an impeccable sense of dramatic timing.

So Thursday morning I was pulling out of the driveway to take Connor to school when he started having a seizure.  I pulled back into the driveway, mashed on the brake, hopped out and gave him a couple breaths before he came back.  Then I wheeled him back into the house, put him to bed, and called the school to let them know that we wouldn't be making it in that day.

Connor woke up around 9:30 or so and stayed awake for about an hour before having another seizure.  This one was one of the twitchy-but-still-breathing variety.  He then promptly went back to sleep and napped until it was time to get up and go to his developmental pediatrician's appointment at the military hospital. 

Guess what he did while I was driving on the highway?

So after I resuscitated him for the second time that day, I called the doctor's office to let them know we'd be a little late as I hadn't factored my kid stopping breathing into our timetable.  We arrived and had our appointment, where I let the doctor know that Connor seemed to be kind of "off" and that he'd already had three seizures that day.  If he had a fourth I was probably going to end up taking him into the hospital since something was obviously going on.  I had planned, however, to take him into the hospital that's less than a mile from our house and to get a bag ready before I went there.

Connor had other ideas of course.  He had a seizure in the lobby as we were leaving the hospital, right in front of the information kiosk where all of the elderly volunteers were totally flummoxed as to what to do with us.  "Call 911!" someone shouted. 

I'm relatively sure that calling 911 from the lobby of a hospital is not proper procedure in situations like this.  Don't they normally have a big button somewhere they can push or something?  Or a PA code?  Not that we needed it, as by this point I am extremely well versed in doing rescue breathing, but one would think there would be some sort of better system in place.

Anyway, so the seizure was only about a minute and a half long and I only had to give Connor about three breaths, which was more than enough to get everyone in the immediate area in a tizzy.  The guys in the information kiosk pointed us in the general direction of the ER and insisted we go check in there.  So I hauled my limp kid over one shoulder and dragged his wheelchair over to the other side of the building, where we checked in with the nurse and then were directed to sit down and wait with all the not-so-urgent cases.

In the meantime at my request one of the volunteers in the lobby had informed our developmental pediatrician of what had happened.  We'd been sitting down in the ER waiting room about ten minutes when we saw him walking towards us.  "What are you doing out here?" he asked.  When I explained that we'd checked in and were now waiting to be seen he looked mad enough to chew nails and spit rivets.  "Let me go back and fix this," he said. 

We were in a room five minutes later.  Five minutes after that the entire pediatrics team from the PICU was downstairs getting Connor's information, a room was being readied upstairs for him and the attending pediatrician, who happened to be the little guy's primary care manager, had popped in.  We were headed upstairs soon after and settled into a room while they called the little guy's neurologist up in Seattle to figure out a game plan.

The rest of the stay was much smoother.  The nurses and doctors were all fantastic and we received excellent care.  So that was all right.

Connor ended up in a private room which was very nice, though putting him in the PICU was probably overkill.  I figured we'd probably end up in observation overnight while they decided what to adjust on the little guy's medication and then we'd go home.  I didn't have any entertainment for Connor (or me) at all as I hadn't planned to be at the hospital longer than the little guy's appointment required, but there was a large television in the room.  Television is a treat for Connor as we go weeks without turning it on at home, and when he's in the hospital we let him watch as much as he likes.  We figure the longer we can keep the hospital a positive experience, the better. 

The TV had about six channels on it.  Showing at the time was Jerry Springer, news, MAD television, more news, the weather, and what I initially thought was some sort of Barbie movie.  I resigned myself to the Barbie movie.

It wasn't a Barbie movie.  It was my own personal version of hell.

To be specific, it was a five minute loop of Barbie music videos and "bloopers" from various movies that the busty blond has apparently starred in.  Connor loved it, of course.  During the next three hours until Connor finally fell asleep I listened to "Get Your Sparkle On" thirty-six times.  It contains such lyrical gems as "when you're in doubt, glitter it out" and "let's rock the runway, this time we'll take the fun way."  You can watch it in all of its terrible glory here, if you dare.

After about listen twenty I actually found myself mouthing the words.  It was horrible.

We also got to watch an amazing modified version of "Unbelievable" sung by a bunch of cats.  Lyric highlights include "You burden us with your problems, you talk behind our backs, but now it's really clear to everyone that pink's the new black."  The video involved, among other things, a breakdancing pig.

Connor really liked that pig.  Also the dancing horse.

Anyway, they gave Connor a loading dose of IV Keppra and some Ativan, and we had a quiet night.  We were just talking about discharge the next morning when Connor (impeccable dramatic timing, remember?) had two more seizures about ten minutes apart.  Neither of them were very bad-- one was maybe a minute long and the other was only about 10 seconds, and neither involved him stopping breathing-- but they were enough to ensure that we'd be listening to "Get Your Sparkle On" another 800 times as apparently the Keppra wasn't going to do it. 

Luckily there were some other children's programs available at that point, or I might not have survived the day.

Jeremy got back from West Point shortly after midnight, and I left him at the hospital with Connor and drove home, where I brushed my teeth and showered for the first time in two days.  I also fed the cats and gerbils, both of whom were dangerously close to resorting to cannabilism.  When I came back up to the hospital this morning the doctors were just thinking about releasing Connor again.  This time the little guy cooperated and we managed to make it out the door.

So the doctors are thinking it's probably a medication issue that's triggering the seizures, as the little guy doesn't seem to be sick at all.  However Connor is maxed out on his Keppra and Trileptal, and we just upped the Lamictal last week and it's too soon to up it again without running the risk of triggering that whole skin-falling-off thing that's a potential side effect of the drug.  So until we can up his medication again (hopefully in about a week) Connor will be on a twice-a-day Ativan regime.  It's not something that he can stay on long-term, but hopefully it will get us through the week without incident.

Or if nothing else, at least until the Barbie music video marathon at the hospital is over.

~Jess

In Which Connor Plays Mr. Freeze

We keep our house relatively chilly in the winter time for a couple of reasons.

The first reason is that we don't like spending money on frivolous things like comfortable indoor temperatures when we can just throw about eight blankets on instead.  Turning our heat up above 62 degrees or so would seriously cut into our coffee shop and book funds, and as we all know those are necessities that Jeremy and I can't possibly live without.

The second reason is that our kid overheats at a ridiculously low level of activity because he doesn't appear to have functional sweat glands.  It's a heck of a lot easier to take a layer of clothing or two off of him to cool him down rather than changing the thermostat all of the time.  Since when he overheats he starts having massive seizures, the ability to cool him down quickly is rather important.  And since the bags of frozen peas are now reserved for icing my numerous roller derby-inflicted bruises, we just keep the house cool instead.

If it were up to the cats, though, it would be a bazillion degrees in here, I swear.  You would think that their nice thick winter coats would make them all warm and toasty, but apparently not.  Today was one of the first really cold and wet days of winter, though, so I turned on the fire and let it get up to a steamy 65 degrees.  This was Cricket's reaction to me turning on the fire.

Really, Cricket?  Aren't you being just slightly melodramatic?  It's not THAT cold in here.

Because it was pretty nasty outside, when we drove out to physical therapy I had the heater going full blast and Connor was dressed in his fleece coat.  For some reason, however, when we got to therapy suddenly the whole upper half of his body was freezing.  He has those weird circulation issues, but normally they're split vertically; the left half of his body will be cold and the right side hot (or vice versa).  Well, today apparently all the blood decided to hang out in his feet, because his face and hands became extremely pale and icy and I was a little worried he was going to pass out-- he kept trying to fall asleep on us.  So instead of PT we wrapped Connor up in a blanket like a burrito and he had a 45 minute snuggling session while we watched him like a hawk to make sure he wasn't going to start seizing or something.

The weird temperature difference faded as mysteriously as it began, and by the time we were supposed to do speech therapy and occupational therapy (we had a joint session scheduled for today) he'd perked up quite a bit.  Mostly he perked up enough to sign that he was ready to go home, and he rejected all of his favorite toys-- at least until another child came into the room for her therapy session and started playing with them.  Then suddenly he wanted all of them back.  Also he didn't like the girl and her family, and he wanted them to leave.  Now.  I'm pretty sure he didn't actually want to play with the toys himself, either, because he was still signing that he wanted to go home.  He just didn't want anyone else to play with them.

Not the most productive of therapy sessions.

Anyway, we got home and he had a couple more of those weird freezing/pale episodes, which is the other reason why I ended up turning the fire on and also messing with our thermostat-- much to our cats' delight.  And I wasn't really surprised when Connor had a massive seizure late in the afternoon, and I had to use the Diastat and then he spent the next hour curled into a miserable ball on my lap intent on covering every single inch of my shirt in tears and snot.  I kind of figured the odd episodes earlier in the day were leading up to some culminating event like that.  He finally calmed down enough for me to put him to bed, and then the little guy fell asleep in about five minutes.  Hopefully he'll sleep through the night and have a better day tomorrow.

On the plus side, I did manage to make it to the bookstore and the grocery before all of the weird-temperature-and-seizure fun, so at least I was well supplied with books, tea and Cherry Garcia ice cream to help me recoup from the day. 

You know-- the essentials.

~Jess


 

In Which Connor Has No School And Freaks Out Over Purple Vegetables

My phone rang at 5:45 this morning.  It was Connor's school; it turns out the big windstorm last night threw out the power and so everybody would be starting two hours late except for morning kindergarten and preschool, which were both canceled.  So Connor got the chance to sleep in, which he thoroughly enjoyed.  I finally went in and woke him up at about 8:30.

We puttered around the house for a while and then stopped by a coffee shop for a snack, where I had a grilled cheese sandwich and Connor had a small bowl of fresh-whipped cream.  Whipped cream is right up there with chocolate pudding on the list of Things That Connor Loves; it's always cute to see him lunging for the spoon.

And admittedly it is really good whipped cream.

My sign language class was canceled this evening, which worked out well because Jeremy and I had an adoption seminar to go to anyway.  First I went and picked up the farm share with Connor though, which is an activity he always finds fun.  He gets really excited about the free-range chickens we see picking through the weeds as we roll up to the farm store.  For some reason he thinks the kohlrabi is really awesome too-- he always starts shrieking and clapping his hands if they have it.

Who knew kohlrabi could be that exciting?

Unfortunately the presence of so many prime examples of the above mentioned vegetable in all its purple glory seemed a little much for him, because he had a seizure on the way home.  He made that little hiccuping, gasping noise he makes sometimes right before he stops breathing and I pulled over on the shoulder fast enough that I sent our pumpkin rolling off the passenger seat.  I only had to give him one breath before he woke back up, but I was pretty disappointed because I thought that maybe we'd have seen the last of these for a while since we just upped his meds. 

Oh well; we'll figure out the right combination someday!

~Jess

In Which It Is Very Windy, And Connor Discovers His Pointer

There's a windstorm going on right now, so I'm going to type quickly because we might end up losing power.  There are tree branches down all over the streets, so driving home from derby practice was a little like still being on the track because I kept having to dodge all over the place with the car.

Connor was in an extremely good mood today because he and I played about eighty bajillion rounds of "patty cake" together.  He won't do any of the motions except for the patting (not the actual patty caking, but the part that says "roll it, and pat it, and mark it with a 'C'!"), but he's really enthusiastic about that part to make up for it.  It's his current favorite game, which means he wants to play it over and over and over and over again.  Fun times.

He's really starting to learn how to isolate his pointer finger on the right side too, which is pretty awesome.  He still doesn't want to touch anything with it, but it's the first step towards him being able to point or to touch the iPad screen with more precision.  Either one of those things would be a major step in the right direction as far as communication goes!  For right now though he mostly either stares at his isolated finger really intently, or he uses it to sign his version of "go."  I'm glad to be seeing it more often!

Even if he's telling me "go" to start yet another round of patty cake.

~Jess

In Which I Skate A Whole Bunch More And Connor Has A Good Laugh

Tonight's going to be another short post, because I'm tired!

I got to sleep in for just a little while this morning, which was lovely.  Jeremy made me some breakfast because he is sweet like that, and I took off just after ten, stopped by the grocery store for some snacks, and then swung down to Tacoma to pick up Annie for our second day of roller derby boot camp!  It ran from one in the afternoon until six at night, and I had an absolute blast.

One of my favorite things we did was a game called "land mine."  They scattered a ton of tiny cones all over the track, mixed in a couple of those huge cones (the type they use at construction sites) tipped over on their sides and then ended the whole mess with two walls of eight-inch high cones.  We had to skate as fast as we could until we got to the cones and then try and get through them without touching any.  So we were flying all over the place, hopping around and jumping and wiping out spectacularly.  It was tremendous amounts of fun!

I've decided that land mines of the traffic cone variety are the best kind.

I came out of the whole two-day experience with remarkably few new bruises and a wealth of new knowledge and skills.  Plus I got to bounce a bunch of other girls off the floor.  So that was pretty awesome. 

By the time I got back home after eating dinner in Seattle and then dropping my friend back at her place, Connor had been in bed and asleep for a while.  He apparently had a pretty good day and is currently having very pleasant dreams; every once in a while he bursts into peals of laughter and when we go in he's still fast asleep.  He does this pretty often-- something he probably inherited from me, as I talk in my sleep-- and while sometimes he'll make other little sounds, almost always when it happens he'll let loose with that chortling giggle that is  contagious and endearingly irresistible.

I always wonder what it is that he's dreaming about, but I'm glad that whatever it is it makes him happy!

~Jess

In Which Connor Is Fine And I Do A Whole Heck Of A Lot Of Skating

Everything is fine!

I was just so exhausted last night that I fell asleep before I posted.  I woke up about two in the morning and realized I hadn't blogged, but by then I was just so comfy it was too late.

It was an extremely eventful day, though.  I got up at about five in the morning and drove over to my friend Annie's place to pick her up.  Then we were off to Seattle for a roller derby boot camp! 

Of course we didn't actually have tickets for the boot camp, which sold out in October.  But we figured if we showed up and someone else didn't come maybe they would let us pay there and then skate.  So we got there early enough to stop and have an extremely tasty short breakfast at a coffee shop, and then we took a couple of deep breaths and walked into the Rat's Nest, which is what the Rat City Roller Girls have named their practice building.

We were directed to sit down next to the one other girl who'd had the same idea we did; she'd driven all the way from Ellensburg--almost two hours-- on the off chance they'd let her skate.  We sat down against the wall and watched the other girls warm up for a little bit, and then they told us we could stay!  So we signed our waiver (there are A LOT of waivers associated with roller derby since it's an extreme sport), geared up, and were off!

We skated from 8:00 in the morning until 1:00 in the afternoon, which was pretty awesome!  They broke down a lot of basic techniques into bite size pieces so that we were able to really focus on form.  Then we had a one hour seminar on skate care and maintenance, and a talk on nutrition for roller derby as well.  All of the information was extremely helpful and I'm really glad that Annie and I decided to take a chance and go!  We left the Rat's Nest at about 2:30 and grabbed some lunch at a local Thai restaurant before driving over to Fast Girl Skates, where I bought myself a new pair of knee pads (I managed to crack one of my knee pads a couple days ago, and the ones I'd bought at the local sports store weren't cutting it) and an extra set of nuts for my wheels.  Then I dropped Annie off and it was back to the house, where Jeremy was waiting so we could go out to dinner (we had Joanna for respite care all day).  We went out to one of our local sushi places and then made a quick stop into one of our local coffee shops (of course).  After that we ran home so I could grab my skates, and we were off to a skating rink for some fun!

And yes, I am well aware of the fact that I skated for five hours earlier in the day.  But I seem to have the same philosophy about skating that I do about books and tea.  If there's one thing better than skating, it's more skating.

Jer hasn't been up on skates since well before he was injured, so he wanted to try and see if he was still able to skate.  He mostly skated on roller blades, but he decided he wanted to take a spin on some quads.  He looked really good out there-- certainly way, way better than I did when I first tried on a pair of skates a couple months ago.  He said that he can feel his feet when he leans in on the turns, but otherwise I think they worked out pretty well!  I think he wants to try roller blades next, and he'll purchase a pair of whatever works better so we can go skating together.  The artistic skates (the kind the skating rink rents you when you go there) have a raised heel which is nice for him since his ankles are a little stiff, so they may end up being the way he goes.

Anyway, so we skated for about an hour and then ended the evening at (of course) the bookstore. 

Connor did really well on the raised dose of medication and (thank goodness) actually slept through the night last night.  We've got some respite care again today and Jeremy will be getting some alone time since I'll be at the second half of my workshop! 

I promise I'll blog tonight, though.  Sorry about that.

~Jess

In Which Connor Has Even More Seizures And Hopefully We Put A Stop To It

Short blog tonight, folks, because I'm headed to bed early!

After a failed attempt to get Connor up and moving this morning I decided to keep him home from school.  The little guy was grumpy and tired, but it was hard to tell if this was because he was getting sick or because he stayed up until two in the morning. 

He had his first seizure around ten or so, and a second around one in the afternoon.  His neurologist called us back a little later and we talked about what could possibly be bringing these on.  Connor has had six seizures in the past three days, which is not so hot, and a number of those have been the needs-resuscitation kind, which I'm not thrilled about.  He speculated that maybe Connor has gotten used to the amount of Lamictal in his system and it's becoming ineffective.  So we're going to up his dose again to 50mg instead of the 37.5mg he's been taking.  Hopefully this will do the trick and the little guy will quit having these!

So we'll be starting that up tomorrow, and I expect him to be pretty clingy, sad and tired, which is how upping his Lamictal seems to affect him.  I won't be there to see how the morning goes, though, because I'm heading into Seattle with a friend.  There's an awesome roller derby workshop being put on by the Rat City Roller Girls tomorrow and Sunday.  Unfortunately it sold out over a month ago-- before I even made a league.  So the two of us are going to go up on the off chance that someone who signed up doesn't show and see if we can score tickets there.  If it doesn't work out we'll spend a nice morning in Seattle and then head home, but nothing ventured nothing gained, right?

So I'm off to bed.  Or at least, I'm going to try to be off to bed.  Connor's still going strong-- he took two substantial naps today because of the seizures-- so goodness knows when he'll go to sleep.  I hope for my sake it's soon!   

~Jess

In Which Connor Has Way Too Many Seizures

I really shouldn't write posts like yesterday's in which I tell everyone that Connor's seizures don't really phase me anymore.  I'm relatively sure Connor views these sorts of statements as a personal challenge.

So Jeremy had off of work today, it being Veteran's Day and all, so we made plans to go down to Olympia and tool around at the Farmer's Market, after which we would go to one of the restaurants in Puyallup that were offering free dinner for soldiers and have a nice family meal before I had to take off for roller derby practice.  The day started out well enough; Jer and Connor slept in while I drove down to Adamo's and picked up a couple of breakfast sandwiches and some extremely yummy drinks.  Not only did I get a major discount on account of it being Veteran's Day, but my drink actually involved not only peppermint and dark chocolate, but also whipped cream with dinosaur sprinkles on it, so it was quite possibly the best drink ever created in the history of everything.  I mean there were adorably bitsy packs of Tyrannosaurus Rex and Triceratops and Brontosaurus frolicking about on top of my drink and they just made me want to take them off and reenact gruesome little sugary battles on the bar.

Anyway, after a leisurely morning we started thinking about getting ready to go down to Olympia, and so Connor decided that it was a good time to have the first seizure of the day.  It was a relatively short one-- only about 45 seconds or so-- but because of it we decided to hold off going anywhere until after lunch.

When he had his second seizure about an hour later, we canceled our trip, gave him a dose of Lorazepam and called the neurologist.  When he had his third seizure, we decided that Jeremy would run out to get dinner and then bring it back, because going anywhere really sounded like a bad idea.

I seriously debated whether or not it would be a good idea for me to go to practice at all; since we'd already used a dose of one of Connor's emergency medications at home our only choice if the little guy had another seizure would be to take him into the hospital where they could give him higher doses of medication.  In the end I went, and just kept my phone on and out where I could hear it in case Jeremy called me.  I was just a wee bit scatterbrained at practice; I actually had to turn the car around afterwards because I was in such a rush to get home that I left my skates back at the building we practice in.  Whoops.

Connor, because of all the sleeping he did after his seizures, is still awake.  It's almost midnight now.  I have no idea what brought on the seizures; he doesn't have a fever and we haven't made any changes to his medications.  I'm wondering if maybe he's coming down with something and the symptoms (other than the seizures, of course) just haven't manifested yet.  I'm not entirely sure what we're going to do about school tomorrow-- we'll see how he's doing in the morning.  The fact that he's had four seizures in a 48 hour period makes me just slightly paranoid, though.  And also tired, as he shows no signs of going to sleep any time soon.

So if he does go to school I'll probably have to take the opportunity to stop and get something chocolate and caffeinated as a panacea. 

Heavy on the dinosaurs.

~Jess

In Which Connor Has Another Seizure And I Reflect On Just How Weird Things Get Around Here Sometimes

This evening Connor had about a three minute seizure.  I was talking on the phone with a friend and folding laundry when I recognized the warning signs; the little guy had stopped playing with his toys, was very quiet and his head was drooping sharply to the left.  I got the oxygen mask in place and Connor settled on his side while I was still talking on the phone. Connor's left leg started jerking about thirty seconds after I had him in position, and I could see his breathing getting shallower.  "Can I call you back in a few minutes?" I asked my friend while I took Connor's mask off.  "I have to resuscitate my son now."  When the seizure was over I put a perfectly calm little kid down in his bed to peacefully sleep off the effects and then went back to folding laundry.

I'm not sure at exactly what point in the past few months it happened, but the seizures have become so commonplace around here by now that I'm sad to say that I don't even have to eat large amounts of chocolate after them to relieve the stress.  Not that I need an excuse to eat large amounts of chocolate, but you know what I mean. 

While I'm happy that I don't get a total freak-out adrenaline rush anymore every time the seizures happen (though I must admit that the not-breathing-while-I'm-driving-on-the-highway ones still get my heart thumping) it's kind of disturbing that I know the signs so well I can tell, usually to the second, exactly when Connor will stop breathing and can judge how much time I have to, say, get off the phone.  I believe by this point I've done mouth-to-mouth almost eighty times on my kid in the last two years.  That's kind of crazy.

The seizures don't really seem to bother Connor anymore either, which is good but kind of makes me sad at the same time because he's had so many of them that they don't scare him anymore.  It's gotten to the point that I actually forget sometimes that everybody doesn't deal with this sort of thing and wonder for a few seconds why people are completely freaking out when he has one in public.  On several occasions I've actually had to split my time between keeping an eye on Connor as he recovers from a seizure and calming down an absolutely hysterical bystander who is convinced I should be rushing my child to the hospital right that second and my lack of excitement is possibly borderline criminal and/or negligent. 

What's really funny is that I was thinking about it, and I'm relatively sure I would still totally freak out if I had to do mouth-to-mouth on someone other than my son.  I have no idea why this is either; I certainly have the technique down by now.  I think it's because that would feel like an actual, you know, emergency.  And while Connor's seizures and the whole stopping breathing thing certainly are also an emergency (and we've had to call the EMTs on multiple occasions when we couldn't get him started up again fast enough), they're an emergency we've experienced eighty times by now.  I think if I still got as freaked out about them as I did when he first started having them I would probably have had some sort of major nervous breakdown by now.

It's this kind of thing that makes me wake up every once in a while and realize just how truly bizarre my life is.

~Jess

In Which Connor And I Go To Seattle

Today after school Connor and I drove up to Seattle to get the little guy's blood drawn for his medication levels.  Due to a mix up though it turned out that the orders for the blood draw weren't in, so we couldn't get it done today.  That was a bit frustrating.

Since I was already up in Seattle and didn't want to waste a trip-- and Fast Girl Skates was right around the corner from the hospital-- I stopped by to pick up a skate key and some laces.  Also new bearings.  Also new wheels.  It took every ounce of my willpower not to buy new skates while I was at it.  That place is seriously dangerous.  I left the store in a much better mood though, so that was okay.

Anyway, so then we went to the bookstore by the hospital, because Connor always gets a new book after he has an appointment in Seattle.  He loves books and is always really eager to go get one, so thus far we've managed to keep the hospital a good experience for him.  I don't really want to think about how much fun these little excursions would be if he started being afraid of the hospital, so I'm going to do my very best to keep that positive association as long as possible, even if I have to employ blatant bribery to do it. 

Also I should probably mention that Connor's not the only one who picks out a new book after his hospital appointments.  So I might have had just a teensy bit of a second agenda there when I decided on going to the bookstore as his reward. 

Um, yeah.  Anyway, we of course had to stop by Fran's chocolates and pick up some salted caramels for Jeremy because the store is right there, after all.  And then we headed home, where I spent the next hour happily cleaning my skates and changing over to my new equipment.  I had just enough time when I was finished to change into my gear (I go straight from class to the skating rink) and then it was off to sign class, where of course I had to show everyone that giant bruise on my thigh shaped just like Diane's skate. 

I've been having this overwhelming urge in recent days to show complete strangers my bruises, which is probably not a good way to convince others I'm not totally insane.  Since it's not really appropriate to go up to people I see in the grocery store and start pulling up my pant legs, I've been contenting myself with working the bruises into casual conversation with people I actually know at every opportunity so that I can show them off.  As in: "Nasty weather, isn't it?  The sky is sort of purple-grey, kind of like this giant bruise I have on my thigh!  Wanna see?"

I'm hoping this urge is something that will pass in time so I can stop completely freaking out people I don't know very well.  Either that or I need to get some bruises in places that are easier to show off in the middle of winter.

~Jess

In Which I Have A Me Day

I have the Internet!  I am extremely happy about this because to blog I just have to walk into my living room now instead of driving down to Adamo's.  Unfortunately unlike Adamo's my living room doesn't have those cinnamon rolls as big as my head, but I guess there are some things you have to give up for convenience's sake.  And when I say "give up," I mean "not eat three a day." 

Anyway today I had respite care, which was lovely.  Since Jeremy works during weekdays this meant that I was on my own, and while I love our dates it's nice to have a little alone time too!

So during my respite care time I wanted to go down to Fast Girl Skates and spend entirely too much money on new wheels.  And yes, I am well aware of the fact that I already have wheels, and that they are only a month old and are still round and roll perfectly well and all that, but now I want new wheels.  Better wheels.  And bearings, and trucks, and boots and knee high socks and the list goes on and on and on.  Roller derby will no doubt improve many aspects of my life, but I seriously doubt my bank account balance will be one of them. 

At any rate I was planning on going into Seattle but sadly it turns out that Fast Girl Skates is closed on Mondays.  Curses!  I ended up hanging out at the bookstore for a while and then heading over to a new friend from derby's house, where she showed me how to screen print a T-shirt.  I came home feeling very artistic and proud of myself!  Of course, she'd already done all of the painstaking, tedious stuff like the actual design and craft work and all I had to do was mush paint around on a screen, but I'm still taking the credit for having Created Art because I'm just nice like that.  I'll take a picture of the Awesomeness That Is My Shirt tomorrow and post it for ya'll so you can admire it in all of its glory.  I would take one today but I'm currently wearing it after coming home from practice and the giant sweat stains would probably detract from the design.

Connor had a pretty good day; I put in a call to his neurology department and they're going to get back to me on what needs to be done about his medication levels.  He's completely finished with his titration schedule and it's time to start tweaking again!  We'll just have to see how things go; currently he's having about one seizure a week, but they're the jerking-but-still-breathing kind, which if he's going to insist on having seizures I much prefer over the stopping-breathing-and-looking-dead kind.  The Lamictal still has a lot of wiggle room, though we have to be careful about zombifying him, and at some point I'm pretty sure we're going to work down off the Trileptal too.

I swear it's always something with this kid!

~Jess
 

In Which Connor Encounters The Lavender Lady Of Doom

I took the day off from skating today since I've probably racked up enough injuries for the week.  The count includes a bruised knee and elbow from the Housecleaning Incident, a banged up lip which should look way more impressive for the amount it bled, and thanks to last night's skating session, a large welt on my leg exactly the shape of my friend Diane's wheel. 

So instead of skating Jeremy and I took the day to catch up on some yard work, go for a scenic drive (we found the town landfill!) and bake some chocolate chip cookies, the eating of which probably helped me go a long way towards earning back all the calories I burned by skating this week.  Connor had a laid back day too, though I think I'm going to need to set him up a doctor's appointment this week to see if he needs some steroids or something for his arms, which are absolutely covered with hives.

Connor, due to the fact that he is quite possibly the Cutest Being Ever To Walk The Earth, is an old lady magnet in the grocery store.  They see him and just pounce on him like a duck on a junebug.  Invariably they end up putting their hands all over him without asking, and last week's elderly woman admirer was no exception.  She grabbed his wrists and hands, which Connor predictably did not take to kindly.  "He's allergic to a lot of lotion," I said as I extracted my child from her death grip.  "Oh, it's okay, I just use that Bath and Body Works stuff my granddaughter gave me," she said.  "You know, that "Sleep" kind?  It's so soothing!" 

Soothing?  Sure.  It's also chock full of lavender oil, which the little guy happens to be deathly allergic to. 

So of course even though I sprinted with Connor back to the bathroom and washed his hands off it was too late and by the time we left the store his little hands were already starting to pop out with the first bumps.  Right now his skin halfway up to his elbows looks like he's coated himself in red "pebble texture" spraypaint.

Poor little guy.  The next little old lady who approaches him in the grocery store is getting whacked with my purse.

~Jess

In Which I Go To The Emergency Room

So I had my first skating-related trip to the Emergency Room last night. 

It was really weird being in the ER for me instead of Connor.  For one thing, they made me wait.  This is not my usual experience.  Whenever we come in with Connor we have a room immediately after walking in and one or more doctors are usually in the room less than two minutes later.  So I'd never actually seen the waiting room of our local hospital before.  They have a pretty nice TV.

Anyway, so I was down at the local skating rink getting some good time on wheels in before next week's practice.  I was wearing my knee pads, elbow pads, tailbone protector and wrist guards, but I'd neglected to put in my mouth guard or wear my helmet since I was already wearing way, way more protection than the typical person wears at a skating rink and was getting some funny looks.

This particular skating time is right after the kid's speed skating team finishes up their practice, so there were little kids all over the rink with those giant inline speed skates on.  Have you seen those things?  They're pretty crazy looking.  Anyway, there were several boys between the ages of seven and nine with these things on, and they seemed to believe that having these skates on meant that the rules didn't apply to them and they were whizzing around the rink, chasing each other and weaving in and out of people. 

One of these kids decided that it would be a good idea to skate in the opposite direction from everyone else.  So here I was, minding my own business when this small blur on wheels was suddenly skating directly towards me at top speed.  I was boxed in by a little girl on my left who was doing that adorable little skate-stomping thing that toddler kids on skates do, and on the right by a really big guy who was really shaky on his skates.  The kid on the speed skates realized that he can't get through us and so decided to do a hockey stop, which now meant he was skidding towards me sideways on his skates.  I figured the quickest way to stop without taking him out was to go down on a knee, which had the desired effect except that my momentum carried the rest of me over said knee and I ended up bouncing off face-first off the rink.

So I got up and shot the kid a look, which was probably pretty effective given the fact that blood was pouring out of my mouth.  My teeth went through my bottom lip, and those sorts of things bleed pretty impressively.  I was sort of lisping when I asked where the bathroom was, and left a lovely trail on their floor as I headed back to the corner to get cleaned up.  I believe I traumatized several small children in the process.

Anyway, so since I'd managed to bite completely through my lip and it was gaping open rather impressively I figured I'd drive over to the local ER and see if I needed anything done to it.  After a pleasant ten minutes or so of admiring the TV in their waiting room (it's a private hospital or I'm sure it would have been about three hours) I was taken back and the doctor glued my lip together and sent me on my way.

Jeremy was disappointed when I got home that my patched-up lip was not more impressive looking.  He was apparently hoping that it would scar more and enhance my roller derby reputation.  He suggested I tell people that I "got in a bar fight."  Nice to know he's so concerned for my well being.  

The good (or bad news, if you're talking to Jeremy) is that lips heal extremely quickly due to good blood circulation, so by this morning (when I took that picture) my lip was only slightly swollen and it looked less like I'd bitten through it and more like I had a canker sore.  By early evening the glue had done its work and fallen off, and I'm relatively sure by Monday when I have roller derby practice again it will be completely gone and if I tell anyone about it I'll sound like my grandfather used to when discussing the fish he caught ("no really, we could use the scales for dinner plates, I swear!").

But despite my disappointing lack of scarring and/or serious bodily injury, I don't intend to repeat the performance to see if I can attain a better result.  Next week I'll be the only skater out on the local rink rolling around in full protective gear. 

I may not like getting those funny looks, but I like keeping all my teeth better!

~Jess

In Which Connor The Yeti Makes A Reappearance, And I Am A Ghost Clown

 Connor decided he wanted to wear his yeti hat to school today for show-and-tell.  It's the first time I've ever seen him actually ask to wear a hat.  "Want hat please" he signed, staring at it after I asked him what he wanted to bring.  Not a phrase I ever thought I'd see from him, that's for sure!

I'm perfectly fine with this, because not only do I enjoy rewarding the little guy when he communicates clearly what he wants, but he's ridiculously adorable in it.  Also I'd like to stretch Halloween out as long as possible, because I'm not ready for Christmas yet.  I'm pretty sure Thanksgiving is supposed to be in between somewhere, but not if you're going by what's in the stores right now.  Connor is thrilled that all the Christmas decorations are out because he goes nutso for all of the lights, but it makes shopping with him a little bit dicey because he gets overstimulated after about five minutes and starts yelling at the top of his lungs.  At least he did last year; he's come a long way since then.  Maybe I'll get about ten minutes out of him this year. 

So I'm doing my best to ignore the fact that for the next two months I'm going to be condemned to running the 500 Yard Shopping Dash every time we're out of paper towels or kitty litter by bragging some more about my son's Halloween costume.  And seriously, the kid has way, waaaaaaaaay better taste in costumes than I did as a kid.  Case in point:

There we are: me, my little sister, and my cousin.  I know it's hard to tell under all that fabric, but that brilliant and astonishingly accurate rendition of a Ghost Clown is none other than little ol' me.  It started out as a plain old ghost costume, but I'd already worn it two or three years in a row and decided it needed to be spruced up.  I believe this was one of my last years of trick-or-treating; I was about ten in this picture. 

I look like a Tootsie Roll Pop with a wig on.  And trust me when I say that this is a classic example of one of my "creative ideas" when it came to fashion.  I totally would have worn that to school.

So I can't help but be proud that Connor seemed to inherit exactly none of my fashion sense.  Though to tell you the truth I'm not sure exactly where his fashion sense came from.  Certainly not from Jeremy; the man wears shorts in forty degree weather and before he married me his entire wardrobe was composed of free t-shirts he got in college. 

But at any rate Connor wore his hat quite proudly to school, and did a fantastic job there; blowing through one of his IEP goals (he stayed on his tummy without protesting for 26 minutes!) and just having one heck of a good time!  As far as I'm concerned, he's earned the right to wear his yeti hat any day of the week!

I may have to get one myself.  If I pull it down far enough, I bet I can block out most of the Christmas music at the grocery store.

~Jess

In Which Connor And I Have A Great Day

Best. Idea. EVER.

Connor had a pretty great day today!  At school he let them paint his feet for a project.  As in having actual wet paint touching his feet.  And when they washed it off, he thought it was funny. 

Wow this kid has come a long way.

Today was a housecleaning day, which Connor always enjoys.  I was doing the laundry in my roller skates (what, doesn't everybody fold their laundry in roller skates?) and I discovered that Connor thinks it's extremely funny if I hold a sheet around my shoulders and skate so it billows out like a superman cape.  So we both had a pretty good time.

Okay, so even if I wasn't doing roller derby I think I'd be doing my chores from now on while skating because it is just so much fun!  Why hasn't Martha Stewart tapped into this?  Seriously, someone should e-mail her about it, because this is hands down the best way to clean ever. 



Action Shot!!!



This is especially true because we have a vacuum cleaner that rolls behind me on little wheels while I use it.  Connor finds this highly amusing.  And the skating has the added bonus of completely freaking the cats out.  Loki spent most of the afternoon puffed up to three times his size and jumping sideways whenever I rolled by; I think he believes the skates are some sort of bizarre animals that have eaten my feet.

 

Okay, so I got a little bit overconfident after about an hour or so and decided to take the recycling out while I was talking on my cellphone, which was A Rather Poor Decision on my part and did Not End Well.  But never fear, I broke the worst of the fall by running face-first into our van, and so my elbow and knee were only a little bit scraped up.  So I've learned my lesson and won't be doing that again. 

Next time I'll wear pads and aim for the holly bush, which would probably be more cushiony.

~Jess

In Which Connor's School District Could Use Your Help And Connor

Everything is fine, I swear!

I came home from three hours of awesome roller derby practice last night to discover that I had no Internet.  Some people are installing a fiber optics cable in the street outside our house and they keep getting into our box and messing with our telephone line.  Since it was well past 10:00pm and I am kind of lazy, I didn't want to go out to a coffee shop that late at night.  So here I am today, letting you know that all is well.  I'll be blogging before practice in a coffee shop until they quit messing with our Internet, so expect blogs a bit earlier in the evening.

What I was going to be talking to you about before my portal to the outside world was so rudely cut off is the technology grant that Connor's school district is applying for through the Pepsi Refresh Project.  Puyallup would like to win a 50,000 dollar grant to help expand their library of assistive technology for students with special needs; kids with learning, speech, reading and physical disabilities like Connor.  The grant would supply assistive technology devices, software and teacher training and would help the 2500 students (incuding Connor!) who receive special services through our school district, many of whom could really benefit from this grant.

Now you know I'm not normally big on plugging things, but this is a really, really good cause!  I know all you parents of kids with special needs know just how expensive this sort of technology can be, and this is such a fantastic opportunity to make a huge difference in the lives of a large number of kids who may not otherwise have access to this sort of technology.  Please take a couple of minutes to stop by and vote for Connor's school district here-- you can vote once a day and voting is open until November 30th. 

Assistive technology is pretty awesome; Connor's been using the iPad for a few weeks now in our outside speech therapy and I think he's really starting to get the concept down!  We tried out a story on him yesterday and he was fascinated-- the kid loves books so that's not really very surprising.  We're shopping around right now to get him an iPad of his very own; we think it's really going to open up a whole new world for him.  We'll have to find him a better version of Goldilocks and the Three Bears than the one he read yesterday, though.  It was disgustingly moral-- at the end Goldilocks apologized to the bears and then actually fixed Baby bear's chair-- I'm not sure who let the six year old have access to a saw and wood, but then she's wandering around in the woods by herself and breaking and entering, so parental responsibility is probably a rather large issue in the Goldilocks household anyway. 

I know Jeremy wouldn't be able to resist adjusting the end to reflect what he calls "appropriate predator-prey relationships" and Goldilocks in our house would end up divided by the bears into three equal portions, which would all be "just right."  So I'll be trying to find slightly less didactic books that he can resist tweaking for our very own iPad when we get it! 

Anyway, go vote!

~Jess

In Which Things Plummet Downhill

Well today was . . . interesting.


And by “interesting,” I mean “insert your choice of inappropriate language here.” It started okay and then veered dramatically off course and ended up in a ditch. Literally.

So this morning was all right, other than the fact that Connor decided he wasn’t going to get out of bed—probably due to the issue that he’d stayed up until midnight. I swear the kid has jumped straight to the teenage years as far as sleep habits go; he must be trying to prepare us for when Ellen gets here. He played the “no really I’m still asleep” card while I was trying to get him dressed, which makes for a fun time: kind of like trying to put clothes on a bag of wet sand. Anyway, he had a relatively uneventful school day and came home happy, though very tired. I put him to bed and he had a relatively decent nap.  There he is pre-nap, looking very dashing (and sleepy) with one of his art projects for the day perched at a jaunty angle on his head.

So then we were off to speech therapy. We got about halfway there and were rolling down the highway when Connor started having a seizure. This one wasn’t very long—maybe two minutes, and was of the jerking-but-thankfully-still-breathing variety, but it still necessitated pulling over to the shoulder and getting him out of the chair, which is never fun. After it was over I turned around and drove home, where I put Saddy McSadkin down for the second nap of the day.

Nap number two was fairly short and the little guy woke up refreshed and in pretty good spirits. It was a gorgeous day outside, and so I thought that a fun, low-energy (on his part) activity might be to hit the Puyallup Foothills Trail with the wheelchair and my roller skates. Connor and I drove out to the trailhead and I strapped him in tightly and put his helmet on before gearing up myself. Then we were off! We went down a smooth, fairly level section of the trail for about half an hour without incident and then turned around. Connor seemed to be thoroughly enjoying himself—he would laugh with delight whenever we went around a curve or over a bump.

We were coming down a very gentle hill about two thirds of the way back towards the trailhead when Connor’s wheelchair ran over a stick. It lodged in the spokes of his right front wheel and the wheelchair jerked abruptly to the right, wrenching the wheelchair out of my hands.

To my horror Connor’s chair plummeted over the side of the trail and into a ditch, where it flipped forward and landed upside down in a blackberry bush.

I sprinted down into the ditch (not an easy thing to do in roller skates) and pulled Connor’s chair upright. Thanks to his harness and helmet the little guy was totally unscathed except for a couple of scrapes on his cheek from the blackberry brambles, but of course he was terrified. I checked him from head to toe, got him calmed down and then took off my skates so I could get enough traction to haul the wheelchair out of the ditch and back onto the paved trail. Then it was a long walk back to the car while Connor periodically made me feel even more horrible by signing such lovely things as “Connor sad. Mommy hurt Connor. Want Daddy.”

We got all the way back to the car and I reached down for my car keys. They’d been right on the top of everything in the bottom of his wheelchair basket, so it seemed odd that I had to dig for them. And for that matter, where was my cell phone? It should have been right next to my keys . . .

Connor was not particularly happy when we turned around to go back down the trail.

Thirty minutes later I managed to find the exact spot where we’d gone off the road and miraculously my keys and cell phone were sitting in plain sight on a little hillock of marsh grass not six inches from each other, completely surrounded by water. So we were able to actually get home, which was nice. It was a very near thing though, and I believe that marks the permanent end of Connor’s Outdoor Skating Adventures.

So we went home where Connor went down for his third nap of the day and I seriously considered joining him. Instead I decided to make dinner; I wanted to use up the last of the tomatoes and peppers from our CSA program and I figured that chicken quesadillas would be the perfect entrée. Unfortunately I’d forgotten that the peppers were jalapeños, a fact I rediscovered when I got an eyelash in my eye. I highly recommend not rubbing your eyes just after cutting a bunch of jalapeno peppers. This is a Very Bad Idea. My eyes have stopped watering enough that I can see enough to type now, but I’m going to look like I’ve had some sort of Horrible Tragedy for a while. The one plus side to discovering that the peppers were in fact jalapenos was that I managed to scrape most of them off before eating the quesadilla. I had three on there, and of course CSA jalapenos, like the rest of the produce from local farms, have a lot more flavor than what you typically get in the grocery store. It would not have been pretty.

The ends of my fingers are still burning whenever I wash my hands, though. I’m not particularly looking forward to taking my contacts out tonight.

~Jess

In Which Connor Decides Never To Sleep Ever Again

Cricket was kind enough to help me with the laundry today.  See how helpful she is?  I'm not entirely sure which end is up in that picture. 

Crazy cat.

Connor decided that it would be great fun to stay up until two in the morning last night.  He couldn't understand why I didn't find it nearly as amusing as he did.  Despite me having to drag him out of bed in the morning he had a good day at school and then for reasons known only to himself, refused to take a nap.  We ran a whole bunch of errands and were out and about for most of the afternoon, but here it is 11:00 in the evening and guess who's still awake?  I think the kid's decided that he's just never going to sleep ever again.  If he keeps this up it will no doubt have serious repercussions on both my writing style and my sanity. 

This might make for some interesting blog posts.

I just got back from my first practice as a Dockyard Derby Dames New Bruiser!  I discovered that I am horribly out of shape and have a long, long way to go before I'll be anywhere near the skill level needed to skate with the veterans.  But I already sort of knew that, so now it's just a matter of knuckling down, getting back in shape, and learning the skills I'll need to be a real derby girl without managing to injure myself in some horrific fashion.  And of course having a terrific amount of fun in the process, which it is already immediately evident will be happening.  We'll just have to see how it goes!

On the positive side, if I do manage to injure myself in some horrific fashion we already have the house set up for that.  Also we have the wheelchair.  And crutches.  And a cane.  But I think I'll do my best to not have to try them all out, thank you very much!

~Jess