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