In Which Connor Puts On The Ritz

I say, old chap-- would you care for a spot of tea? 
Pip pip and all that!

Happy Halloween, everyone!

Connor dressed up as a dapper gentleman for Halloween this year.  Mostly he just wanted to wear his top hat.  Let me tell you that painting a handlebar mustache on an extremely ticklish small child in liquid eyeliner is not as easy as it sounds, but after a few missteps it turned out pretty well. 

We didn't go trick-or-treating this year though; we stayed home and passed out candy.  It was drizzling outside, and since Connor doesn't eat candy I didn't want to take him out to be wet and miserable just because it was what all the other kids were doing.  So he held the candy bowl and helped pass out the candy, which he seemed to enjoy just as much.  He didn't stay awake very long though; he started drooping around seven in the evening and was out shortly thereafter. 

We had quite a few cute kids come through the neighborhood, and I don't have very much candy left over-- which is good since we all know who's going to eat the lion's share of what's leftover.  I make a point of only buying candy brands that I like, because Jer's not a big one for candy and Connor's not eating it! 

Anyway, it was still a good night even with the rain, and Connor didn't overheat in his outfit or anything this year.  Hooray!

In Which Connor Is A Dashing Rogue

Today Connor and I went thrift store shopping, which was both a bad and a good thing.

It was a bad thing because I didn't take into account that all of the thrift stores were having huge labor day sales.  This meant that the lines for the checkout were fifteen people deep, you had to take a number to use the fitting room, and getting the little guy's wheelchair through the already narrow aisles was a nightmare.

On the up side, I found him a top hat.  And Connor in a top hat has to be one of the best things I have ever seen.  Not only is he thrilled about his new stylish headgear (really-- who would have imagined Connor would like a hat?) but for some reason whenever I put it on him he immediately puts his hands together and starts twiddling his thumbs in what we call his "plotting world domination" posture.  He looks like a ridiculously adorable Victorian villain. 

It's a little big for him and has a tendency to slide down over one eye in an adorable manner, but that's an easy fix with a quick application around the inside of the brim of that foam tape you can find at craft stores.  I'll also be giving it a nicer trim to make it a bit nicer, since at the moment it's obviously a Very Cheap Hat. 

After that, all I will need is to find him a miniature waxed mustache and he nations will have no choice but to give way before his unstoppable power of cuteness.  We got the hat for Halloween and Steamcon, but if Connor wants to wear it on other occasions I will have zero objections to that.  Heck, I kind of want to get a matching one.  Then we could really go out on the town in style.

For that matter, the world at large would probably be much improved if there were more top hats worn by the general population. 

Top hats for everyone!

~Jess

In Which It Is Halloween And Connor Gets Sick

Happy Halloween, everyone!

Well, I spoke too soon yesterday on the seizure front, I'm afraid.  Connor had a pretty good morning, and then late in the afternoon he had his first seizure in two weeks, which is when I discovered he was running a 101 degree temperature.  He had two more seizures before the Tylenol brought his fever down enough to get them stopped.  Other than the temperature and saying that he was tired he didn't seem out of sorts, though.  He spent a good portion of the afternoon sleeping, so maybe his body is coping with the fever that way.  I'll keep an eye on him tomorrow and make sure his temperature doesn't get any higher.  Since he doesn't have any other symptoms right now, I'm wondering if maybe he's got a bit of an infection going-- maybe a UTI.  We'll just have to see.

Once the Tylenol kicked in he seemed to perk up, and by the time Jeremy got home he was feeling pretty good, so Jer took the little guy out for just a bit of trick-or-treating.  Connor was a yeti again this year; he got so excited about that costume when I took it out that I figured he could just wear it again this year.  So while the boys were out I stayed home and passed out candy.  We had a slim crop of trick-or-treaters this year, possibly because it was pretty cold outside.  There were quite a few teenagers who came to the door; I'm hoping that next year Ellen will be home and able to try out trick-or-treating for the first time! 

My sister left today and I miss her already.  It was lovely having her here; I wish we had the chance to get together more often.  While I absolutely love living up here in the Pacific Northwest, it is difficult having most of our family 2100 miles away in Texas.  I guess I just have to convince them all to move up this way!

Anyway, hopefully the little guy will be feeling better tomorrow.  I'll be spending that day helping him out with the vast majority of his Halloween candy, which he can't eat.  It's a horrible job, but somebody's got to do it. 

Yum!

~Jess

In Which Connor Looks Great And My Sister And I Grow Facial Hair

It was yet another fun-filled day of sisterly shenanigans over here, as Mary and I decided to go check out The Sock Monster (thank you, astute reader "rbn" for that lovely suggestion) up in Seattle.  But first we had to stop by Adamos and pose with chocolate mustaches.  For Science!

Anyway, so we took the lovely scenic drive up to Seattle to go buy many, many socks, which The Sock Monster luckily had in abundance.  Mary and I both found several pair, and I also got a couple pair for Connor.  Since he wears his braces for most of the day his socks are on display a lot of the time, and so I like for him to have stylish tootsies.  I have a feeling I'll be visiting that store on a fairly regular basis.

After that we ate some gelato, because it is physically impossible for me to pass a gelato shop without going in and eating some.  Then we drove over to the shopping center Jer and I frequent when the little guy is staying up at the hospital in Seattle (something that thankfully hasn't happened for a while) and did some browsing around the various shops there. 

We mostly window shopped, and found a whole lot of cute things in various stores that we decided we could make fairly easily ourselves in all of the spare time (ha!) we have.  We also had to look at, touch and comment on every single thing in every single store we went into, because we are the most annoying customers in the world.  Oh well.  All in all it was a pretty great day!   

Oh, and Connor had yet another fantastic day too.  Tomorrow marks two whole weeks without a single seizure!  I believe the last time that happened was somewhere around July, which is kind of crazy.  Here are a couple of pictures from yesterday that Joanna took.  In one he's decked out in all of his Yeti glory with his best friend baby C, who as usual is annoying the bejeezus out of him.  I'm pretty sure he secretly likes it though, because he gets pretty excited when I tell him that she's coming over.  In the second one he's painting his pumpkin.  Doesn't he just look great? 

That's my big boy!

~Jess

In Which I Have A Bout And Connor Visits The Pumpkin Patch!

So today was bout day for me; my roller derby team, the Trampires, played the Terrormedixxx up in Bremerton.  This was the first bout my sister had ever seen me play in, so I was hoping it would go well.

Bout day takes up way more time than just showing up shortly before play time; our team lunch today was at 2:00 in the afternoon, which meant we left the house just before 1:00pm to get there.  We ate at this little tiny Filipino place that had an interesting choice in decor-- it was lined on both sides with full size broken refrigerators.  Seriously-- there must have been at least eight fridges in a space slightly larger than my laundry room.  It was very, very strange and more than a little creepy.  Oh well.

While we were eating at the Filipino Lumpia And Broken Refrigerator Emporium, Connor was off with his respite care worker and her family at the pumpkin patch!  First they stopped by to trick-or-treat at Joanna's mom's house though, and he received a giant package of pudding which was apparently the most exciting thing he'd ever seen in his entire life.  He wore his yeti costume again because what the heck-- he likes it and it still fits. 

Then they were off to the pumpkin patch, where Connor was forced to do all sorts of horrible things, like sit in a pile of corn and touch pumpkins and stuff.  Horrors.  He also painted a pumpkin today, which is currently sitting on my kitchen island.  It is very cute, and I'll be putting it out on the porch tomorrow so the whole neighborhood can see what a fantastic budding artist we have in the house!

So the bout was really fun and I felt like I played well, which is always nice.  We lost by quite a bit, but we still had a great time!  A lot of people were dressed up in all sorts of crazy costumes (including some absolutely adorable kids) so I had fun checking out all of the creative get-ups people were wearing.  Jeremy and Mary both got to come, so that was pretty fun too!  I'm glad things worked out to where Mary was able to see me play; I love getting the chance to share the sport I enjoy so much with family. 

And now it's way past my bedtime, so I should probably go to sleep!

~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 The Yeti Has An Eventful Day

 Cutest.  Yeti.  Ever.

Connor the Yeti wore his costume pretty much all day today, and he had a great time!  He loved stroking all of the fake fur and carefully feeling his socks.  It's obvious how much he loves it because he even asked to have the hat on!  He didn't try to take it off the whole day.

At around 11:00 we went down to one of our favorite little coffee shops, where Jer and I got brunch and watched Connor the Yeti charm the pants off of everybody.  Then we drove downtown and walked around Pioneer Park for a little bit.  We had the playground to ourselves, so Connor the Yeti got to swing on the swings for a long time! 

After a proper resting up, we headed down to the mall for a little trick-or-treating.  Our local mall puts on a miniature Halloween festival, and a bunch of the stores give out candy.  What better way to introduce Connor the Yeti to the concept of trick-or-treating?  It would be in indoors, in an environment he knows well, and not in the dark.  If he did really well we figured that Jer would take him out this evening in our neighborhood.  Because it was such a sunny day, we figured there wouldn't be very many people there.

Boy were we wrong about that.

The first thing we noticed that was unusual was the fact that all of the parking lots seemed to be full; we had to drive around the mall to find a handicap spot, which is pretty unusual.  Then we got inside and beheld the glorious chaos within.  There were lines for the candy.  We're talking outside-the-store-and-around-the-corner kind of lines.  Like us, many of the stores had also vastly underestimated the number of children who would be there and had run out of candy in the fifteen minutes the festival had been running before we got there.  So they kept having to run over to the Target and buy more.  You could tell when they opened a fresh bag of candy because there would be a stampede in the general direction of that store.  There were children everywhere.  If we'd had the slightest notion of what this was going to look like, we never, ever would have taken Connor the Yeti there.

But you know what?  He did a fantastic job!  Other than throwing his bucket on the floor a couple of times he didn't protest at all, and he seemed pretty interested in the other kids and all of the costumes.  He didn't even take his hearing aids out, and let me tell you it was LOUD in there.  We only stayed about fifteen minutes because that was all of the noise and excitement Jeremy and I could stand, but Connor the Yeti was still going strong when we left.  Maybe his yeti costume makes him feel like he has armor on or something; there wasn't a whole lot of exposed skin for people to touch.  He did maintain a death-grip on my finger when I was walking next to the wheelchair, but that was the only sign that he was the least bit nervous.

His costume was a tremendous hit, though people had a hard time figuring out what he was.  Most of them seemed to think he was a rabbit with teeth, which made me really tempted to start spouting comments about the Holy Hand Grenade of Antioch.  Once we told them that he was a yeti they only seemed to get even more excited about his costume, which Connor the Yeti seemed to appreciate.  We didn't see a single other yeti out at the mall, and since I'm relatively sure every kid from the entire county was there it's a pretty good bet that he was the only one of the evening.  I think he was pretty happy about all of the praise he got.  We may be seeing Connor the Yeti popping up after Halloween too, if he's that comfortable in the costume. 

We told him when we got home that if he wanted to he could go out trick-or-treating this evening he could.  He spent the next two hours in a state of extreme excitement; he was giggling and squealing and just being ridiculously adorable and happy.  At around 6:00 in the evening, just as it was getting dark, Jeremy and Connor the Yeti embarked on their great Neighborhood Trick-or-Treating Adventure!

It lasted all of ten minutes.

I was sitting and waiting by the bowl on candy when there was an enthusiastic knock on the door and when I opened it, Jeremy wheeled Connor the Seizure Yeti back into the house.  Apparently they'd made it down one side of our street and were coming back down the other side.  Jeremy had just rung the doorbell on a house almost directly across from ours when Connor the Yeti (who apparently share's non-Halloween Connor's impeccable sense of dramatic timing) started having a massive seizure as the door opened.  Since the little guy was still breathing Jeremy just left our (probably now thoroughly freaked-out) neighbor's doorstep and jogged across the street and up our front walkway. 

The little guy was still conscious and lucid, but he was jerking pretty violently and was having a difficult time catching his breath.  We started him on oxygen and decided to go ahead and give him the Diastat after about four minutes because he was getting more and more upset and scared as he seized.  He was trying to cry but couldn't get any sound out because he was jerking so hard that he couldn't catch his breath, and so silent little tears were rolling down his face.  It was heartbreaking, to say the least.  The seizure stopped about a minute after we gave him the emergency medication, and so then Connor The Saddest Yeti That Ever There Was sobbed himself to sleep in my arms. 

So that was not exactly the Halloween experience we were hoping for. 

There was one bright spot to the end of the evening though; since all the trick-or-treaters went to the mall this year instead of our house I have a huge supply of leftover chocolate.  Since Jeremy's trying to keep his body fat percentage down so that he has less weight for his feet to move, he's not going to want to eat too much of it.  Looks like I'll be forced to consume massive amounts in the next few weeks so it doesn't go stale. 

Horrors!

~Jess





In Which I Am Megathrillated!!!

I MADE IT!!!!!

I'm officially a New Bruiser for the Dockyard Derby Dames!  I can't even tell you how ridiculously excited about this I am because it's so much excitement that I'm not sure there's a word for it.  I'd have to make one up.  Like "megathrillation" or something.  That's a pretty good one.

Don't ask when you'll be able to see me skate my first bout, though, because it will be a while.  I am currently the lowest on the totem pole when it comes to derby, and I have to go through a bunch of steps before I'll be on a team.  First I'll be training for a while-- learning all the skills I'll need to go head-to-head in a roller derby bout.  Then when the coaches think I'm ready I'll take a scrimmage test to become qualified to skate in full-contact practice bouts.  Next they'll have a draft, in which I'll have to undergo more tests and interviews.  If that goes well I'll (finally) be chosen for a team!  So it's a long process, and it will take several months at the very least before I'm actually to the point where I'll be bouting in public. 

I'm still megathrillated (ha!) about it though, because I'll be learning with and from a fantastic bunch of women and it's exciting to think of myself as having a kind of alternate persona!  Also it's a great excuse to buy more knee high socks.  I love those things.

I'll do my very best to not let roller derby take over my entire blog; let me know if I get too long-winded about it and I'll tone it down, I swear!  Or make up a second blog devoted to derby-- one of the two.

Oh, and we had respite care today, and we went and saw a movie, and Connor is fine and whatnot.  You know-- all that non-derby related stuff that I usually talk about when I'm not squealing about the fact that I made it through tryouts and that my first practice is on Monday and it will be AWESOME.

Ahem.  Anyway, tomorrow I'll be returning you to your regularly scheduled programming.  In tomorrow's case this will include the hotly anticipated pictures of Connor dressed up as quite possibly the cutest yeti in the history of the universe.  I'm warning you right now; his cuteness will be right off the scale.

And did I mention that I MADE IT???

~Jess

In Which We Mess Around With Connor's Meds Some More, And He Tries Out Being A Yeti With Great Success

Connor went back to school (finally!) today, and he didn't have a seizure or cry so much he got sent home or anything!  His eyes have pretty much cleared up and he's no longer contagious, though we'll be doing the antibiotic eye drops for a while longer.  I'm pretty sure Jer and I managed to avoid getting pinkeye too, which I'm pretty relieved about.

I was a little worried about how Connor would do at school today because of the pattern the little guy has been following recently.  After he gets his Lamictal (at 7:00am) he usually falls back asleep and then is pretty tired and irritable for the morning. 

We've also noticed him having between two and four episodes during the first half of the day that we're pretty positive are partial seizures; he stops breathing and turns dusky for about twenty to forty seconds.  His eyes are fixed and he drools a lot, but he can still move his arms and legs and we're pretty sure he still knows what's going on, because he can sign and give "high fives" while in the middle of one.  This started up last Tuesday-- after we upped his Lamictal to its current dose-- and doesn't seem to be getting any better.  While we'd much rather have twenty-to-forty second seizures rather than the longer, more dramatic seizures he usually has, we're not really thrilled about these. 

So I talked to Connor's neurologist today, and he wants us to split Connor's Lamictal dose so we're giving him 12.5 mg of it in the morning and the remaining 25 mg in the evening to see if that changes anything.  We'll be starting that tomorrow, and I hope it works out!  I'm a little nervous about how the first day is going to go, since he'll be getting a much smaller dose in the morning than he's used to.  Let's hope he does all right!

The little guy brought home his school pictures today!  What do you think?  I think he's pretty handsome, and he looks like such a big boy!  Certainly big enough to go trick-or-treating, which Jer and I are looking forward to since it will be his first time.  I finished up Connor's yeti costume yesterday; I bought a white long-sleeved shirt and whip-stitched some fake fur to the front and cuffs.  I found some adult women's white fuzzy socks (they were an early Christmas item-- can you believe Christmas stuff is out in the stores already?) which come up to his thighs-- they're made of stretchy material so they stay on him pretty well.  The socks are nice and warm, and we'll layer them with some jeans and a jacket, which the fur sticks out of; we tried the whole ensemble on, complete with fuzzy yeti hat, and it looks ridiculously adorable!  When Halloween is over I can undo the stitching on the fur and have a perfectly good shirt, and I can wear the socks myself.  I can't wait to show you how cute he looks!

 We're trying to work out the logistics so that we can spend some time passing out candy and some time going to door to door as well.  How do those of you who take your kids trick-or-treating do it?  I'd love to know!

~Jess