In Which We Have A Flashback And Start The New Year Off With Some Craziness

So I spent most of the first part of today making three gigantic floofy tutus.  I wore one of the tutus (a classy black and white knee-length number) along with pink feathery cuffs, choker, bunny tail and ears while I marched in a parade with my fellow derby gals.  The evening also involved a giant tiger puppet, a pizza parlor, a reenaction of Charlie the Unicorn in blown glass, a burlesque show and (of course) a coffee shop.  It was a busy night!

But I promised to tell you about Christmas.  So we'll talk about that instead. 

Anyway, the flight to Dallas was uneventful other than the part where Connor had a seizure fifteen minutes before we left for the airport.  The little guy is thankfully a very good flier so long as he can look out the window.  We touched down in Denver, Colorado and drove to Colorado Springs, where we attended a wedding at the Air Force Academy.  The chapel was pretty incredible and it was a beautiful wedding, but Connor was most impressed with the pipe organ.  He tried very hard to convince us that he needed a similar one for Christmas.  We could install it right next to his 50 foot tall Christmas tree.

After that we flew down to Dallas, Texas, which is where a large number of our relatives from both sides of the family live.  The next eleven days were a whirlwind of gatherings, outings, presents and family togetherness.  It was fantastic to get the chance to see everyone!  The last time the three of us were able to go down to Dallas as a family was Christmas of 2008, so it had been far too long.  Since it's not likely we'll travel to Dallas next Christmas as we should be bringing our daughter home sometime around that time period and don't want to submit her to baptism by fire (welcome to the United States-- let's meet your eighty new relatives!) it was especially great that we got the chance to see so many of our loved ones on this trip.

While we were down there my sister, who among other things happens to be a professional photographer, was gracious enough to take a whole bunch of pictures of me suited up in my roller derby gear.  We did this in a nice area of downtown McKinney on a Tuesday just after sunrise and startled the heck out of a number of morning commuters.  She had to be extremely patient with me because (in case you couldn't tell) I am a giant goof ball and so half of her pictures involved me making a duck face or some other ridiculous expression.  I submit an example here so you know what she was dealing with.  At any rate she still got some fantastic pictures despite my lack of cooperation (such as the other lovely picture on here), so that was pretty awesome.

Connor had a difficult time with some of the transitioning; we split our time between my parents' house and Jer's parents' house, so just about the time he got settled in to where we were it was time to move.  He took actual naps, which is nearly unheard of for this kid, and had quite a bit of seizure activity.  I suspect the stress probably lowered his seizure threshold.  However he really did an incredible job with all the hustle and bustle of the holidays, and I was very proud of how far he's come. 

Certainly how he rang in the new year-- fast asleep in bed-- was a major improvement on last year.  Let's hope the upward trend continues!

At any rate it was a great holiday trip, but I have to say I'm happy to be home!  Traveling is pretty exhausting-- especially with the amount of equipment and supplies we have to haul along for Connor-- and so it's nice to be able to kick back and relax for the rest of Jer's time off. 

And if that relaxing time involves tutus and bunny ears, so much the better.

Happy New Year to you all!

~Jess

In Which We Go On An Airplane

Well, we added a new first to our list of unusual places Connor has had a seizure.  He managed one at 33,000 feet in the air this morning, in the middle of an airplane.  Luckily it was a pretty short one, he stayed breathing and the flight attendants didn't notice.  We didn't really want to send the plane down early or anything. 

So you may be wondering what, exactly we were doing on said airplane.  We were flying home from Texas; we've actually been gone since December 17th.  So all of those posts where I didn't have any pictures and/or wrote a really short blog were actually due to a combination of bad Internet connections and settings that definitely didn't look like Washington state in mid-December.  The other reason the posts were short is because it is very difficult to find things to write about that didn't involve giving away the fact that we were actually somewhere else.  Like when I said that Jer was feeling under the weather, when actually we were in Colorado for a wedding and he got altitude sickness and threw up all over our hotel room and then just felt generally horrible until we got back down to an elevation under 6,000 feet.  That was a fun couple of days there.

Anyway, I tried my best to not let the cat out of the bag while we were gone because while I love all of you very dearly, I have no idea who most of you are.  And so since I didn't really want to broadcast something like "Hey, Our House Is Empty Right Now!  Come Visit And Check Out Our TV, Appliances And Small Valuables!" I figured it would be better to talk about the trip after the fact.  But it was very difficult, because I didn't want to lie to you.  So I just had to find a bunch of stuff to talk about that didn't have anything to do with what we were actually doing at that moment, which I did with a debatable degree of success.  This is what happens when you write a personal narrative-type blog, I suppose.

But now I get to talk about our trip, which I will do once I have actually gotten some sleep.  We got up for our flight at 3:30 this morning Texas Time, which works out to 1:30 in the morning for us, and then caught a five or so hour flight (direct, thank goodness) that left at 5:40 our time.  And then we unpacked, I took a quick nap, ate dinner and went to derby practice.  So I am just a wee bit tired at the moment.

Anyway, there is a Christmassy-type picture of Connor and me taken by my lovely sister to tide you over until tomorrow, when I will have many, many more things to share with you!

~Jess

In Which I Am Very Very Tired

Connor had another seizure today, but it thankfully wasn't a bad one.  One of the beneficial side effects of said seizure is that he'll probably actually sleep tonight-- something I'd be seriously thankful for.  He decided to stay up until four in the morning last night again.  This time it was apparently because he didn't have a shirt on.  He likes to sleep in a shirt and a diaper, and since we were doing laundry we neglected to put on the shirt. 

So he just stayed up and yelled, loudly, for seven hours or so until we figured out what the heck he wanted.  This is one of the problems you end up with when you've got a kid with a limited vocabulary.  A very stubborn kid with a limited vocabulary.  Once we put a shirt on him he snuggled right down and was asleep within fifteen minutes.

Sigh.

And now I'm for bed.  Good night!

~Jess

In Which I Get Back To Skating

I eased off on the skating during the holiday season. This was for a variety of reasons.

The main reason was that I managed to bruise the crud out of my sternum and the ribs on my right side over a particularly violent week of derby practice.  Breathing became extremely fun, as did lifting my arms over my head, carrying Connor, and a wide variety of other exciting activities.  And then I caught a cold. 

Let me tell you, coughing with a bruised sternum is not fun.

My lack of skating also might have had something to do with the fact that it was the holiday season, and that Jer was off of work, and also possibly that I had a large quantity of new books and a huge supply of chocolate that wasn't going to eat itself, you know. 

It was a terribly hard job, but somebody had to do it.

Anyway, so what with the bruising and the coughing and family togetherness and the sitting around eating massive quantities of chocolate there wasn't a whole lot of skating going on, something that after returning to the rink today I am seriously regretting.  However, my chest is finally feeling like it's not going to split open every time I take a deep breath anymore, so it's time to get back to work! 

My leg muscles don't currently seem to agree with me, however.  I believe they prefer the sitting around and eating chocolate, and they are now protesting the return to physical activity.  Loudly.

I intended to ease back into things-- I wasn't planning on spending more than two hours at the skating rink.  But there's something almost hypnotic about skating around in a circle for a while; you sort of lose track of the time.  As a result I spent four hours at the rink instead and my leg muscles are now in open rebellion. 

Oh well-- they'll settle down eventually.  Maybe if I eat more chocolate it will make them feel better.  Chocolate solves all problems.

At least I got enough sleep last night.  And Connor had no seizures or anything, which was also awesome!  So that was a good thing.  I enjoyed the holidays thoroughly, but they're just about over now (and also I'm almost out of chocolate) so it's time to get back to business.  Hopefully Connor feels the same way and will quit with the shenanigans!

~Jess

In Which Connor Becomes Nocturnal

Connor had a much, much better day today.  He was back to his usual cheerful self, and we didn't see any seizures.

Jer and I, however, were a little tired.  This was because Connor stayed up until four in the morning.  Evidently he'd filled pretty much all of his sleeping requirements with that ten hours or so he slept during the daytime.  So he went down at his usual time, and then woke up around nine and proceeded to stay very noisily awake for the next seven hours.  It was apparently playtime. 

While it was definitely an improvement over sad, lethargic Connor, Jer and I were not particularly thrilled with this development.  We like our sleep.

I'm relatively sure we won't be seeing a repeat of that performance tonight though, because the little guy didn't even nap today.  He was way too wound up for whatever reason.  He kept signing that he was tired, we'd put him down, and then he'd be all like "Just kidding!  I'm not really tired at all!" and he'd spent the next thirty minutes doing his own version of the 1812 overture if the 1812 overture had been performed by a toddler saying "AAAAAAAAAAA" instead of cannons until we'd get him up.  And then an hour later he'd start signing that he was tired again.  It was very confusing.

I'm not sure that explanation was entirely coherent.  Sorry.  I'm kind of tired, and when I'm tired my brain goes even more nutso than usual.  Bad things happen.

Anyway, I was forced to wake myself up by consuming a ridiculous amount of chocolate, so I spent the day in a sort of sugar-induced hyper state of delirium.  Not that I probably wouldn't have eaten all of that chocolate anyway, but this at least gave me an excuse for it.

I'm going to bed now.

In Which We Wish You A Merry Christmas

Merry Christmas, everybody!

Connor felt pretty under the weather today-- he slept for about eight hours and had a couple of seizures.  I think Christmas was just a little overwhelming for him.  But hopefully he'll feel a little better tomorrow; we'll try and take it easy so that he gets the chance to recover.

Despite Connor feeling poorly it was a lovely Christmas for us; right now I'm so stuffed with leftovers that I'm not sure I can move.  And I've still got enough chocolate to last me at least another week or so if I slow it down a little. 

Okay, maybe three days.  I'm eating a lot of chocolate.

Connor received a number of great gifts, including some clothes, a case for his iPad, and a number of books and toys.  I think the current favorite is the electronic drum kit, which makes a variety of extremely loud, interesting noises that will no doubt keep him well occupied once he's feeling better. 

And now I think I'm just about ready for bed.  It was a long day today for me, too!

~Jess

In Which It Is Almost Christmas

Well the stockings are filled and Connor is asleep.  I haven't noticed any visions of sugar plums dancing around his head or anything, but he was making what we call his "Velociraptor of Doom" noises (basically an open-mouthed, barely audible hiss) right before bed, so maybe he's dreaming about a sleigh pulled by eight miniature dinosaurs instead.

That would be pretty cool, actually.  I'll add that to my list of stocking design ideas.

The little guy had a seizure-free day today, thankfully.  He didn't have a fever at all, so hopefully he's on the mend and this was just a 48 hour bug. 

I'm not sure how much Connor understands about Christmas; he's certainly not big on presents, though he likes the wrapping paper.  When you really don't like touching new things, I'm not sure a holiday that involves receiving a bunch of new things to touch is really going to be a favorite.  But he loves the music, seems to enjoy reading the Christmas story, and I know he enjoys all of the time we get to spend together as a family. 

I didn't take any pictures of the hustle and bustle today, but we did attend a wedding last weekend and the boys got all dressed up for the occasion.  Here's an only slightly-blurry-but-appropriately-Christmassy picture of them in all their finery, for those of you who've requested a picture of the little guy.  I know I've been slacking off in that department, but I swear I'll start taking more once the holiday craziness is over.

Anyway, a very Merry Christmas to you all!

~Jess

In Which Connor Has More Seizures And Roasty McStuffingkin Makes His Debut

Connor had two more seizures today so we gave him a dose of Ativan in addition to his Tylenol.  Other than being a little tired-- completely understandably-- he didn't seem to feel too under the weather, though.  We took it kind of easy with him for most of the day.  He didn't take four naps like he did yesterday, so hopefully he'll sleep better tonight.  I wasn't really excited when he decided around three this morning that it was time to get up.

We piled in the car this evening and went for a drive to see the Christmas lights; an activity that Connor always enjoys.  He tends to like the way over-the-top houses; the ones with multicolored, blinking lights are especially appealing.  Some of the people in the neighborhood we drove around in were more than happy to oblige.  One yard has a full herd of those mechanized deer in it, and another one has over two dozen blow-up decorations and a light show set to music.  Connor really enjoyed the view, so we drove past those houses a couple of times.  I had fun speculating what their power bills must run for the month of December.

My nephew's stocking is finally finished, and as promised here's a picture of the finished project in all of its sequiny glory!  I figure I'm off the hook for Christmas presents for the next eighteen years or so.

Roasty McStuffingkin ended up with kind of a disapproving expression.  Apparently he is a Very Serious Bird, and is sitting in the pear tree conducting Extremely Important Business and must Not Be Disturbed.  Possibly he is up there because he gets better wireless reception.  I'm not sure.

Anyway, I'll take a break for about a month to let the tips of my fingers heal up and to forget just how much I hate sewing projects like these, and then I'll start on a stocking for Ellen.  I'll probably get really excited and pick something even more elaborate for her, if that's humanly possible.  It will no doubt involve even more sequins. 

Oh, joy.

~Jess

In Which Connor Is Sick Again

Well, it looks like Connor is feeling under the weather again.

He had two seizures today and was running just a hint of a fever.  As a result he took four naps and was pretty out of sorts for most of the afternoon.  I'm hoping that this bug-- if that's what it indeed turns out to be-- resolves itself quickly since we started with the Tylenol early and we'll be able to skip the worst of the seizures.  The Tylenol won't help him get better any faster, but if it can keep the seizures down I would expect his body will be able to fight off the infection much more efficiently.  We've also got him on his g-tube pump to make sure that he stays properly hydrated.  He tends to have trouble keeping down food when he gets sick, so it's better to spread it out over a longer period of time.

Jer and I both feel all right at the moment; hopefully we won't end up getting sick too, because it would make for a miserable holiday!  I've finished up all of the Christmas shopping and the presents are under the tree.  We've still got a few days before Christmas, so if we're in luck this will be a 48 hour bug and Connor will be fully recovered before the excitement and bustle of Christmas morning.  If he's still not feeling well, we'll probably keep everything really low-key.

It's a shame that the holiday season correlates with the cold season!

~Jess

In Which Connor Needs Some Zen Time

Today Connor had a little seizure.  It wasn't much of one though, which was good.  We were a little late on his midday seizure medication, which is probably what caused it.

Even well after his recovery from the seizure finished he was just kind of crabby and off today-- I think that being out of school and having his routine changed around is getting to him.  He is definitely a creature of habit, and he doesn't like having things switched around, even if we warn him about it in advance.  Hopefully he'll settle down again in a few days.

One routine change is a good thing for me though-- having Jeremy around means that I can leave Connor with him and finish up all of our Christmas shopping alone!  This is infinitely preferable to having the little guy with me, because he gets so overwhelmed by all of the displays, lights and noise that he usually has a big meltdown in fairly short order.  Christmas is one of those holidays that's very, very difficult for a child with sensory perception disorder because there's just too much of everything.  Heck, more than an hour at the mall this time of year leaves me exhausted and overloaded, and I'm not dealing with any of the issues Connor does on a daily basis as far as sensory issues go. 

He didn't do any Christmas shopping at all today and still ended up spending a couple of hours in bed at the end of the afternoon just calming down and trying to recenter himself.  Any time we'd try to pick him up or reengage him he'd start crying until we set him down again.  He's gotten to the point where he recognizes when he's becoming overwhelmed and will actually tell us that he's ready to go to his room-- usually by signing "Tired, bye bye."  If that doesn't work he has a complete meltdown, which serves the same purpose.

I'm glad that he's able to recognize at this point when he needs some time alone to recenter himself, and he's certainly become much more tolerant over the years in terms of sensory issues.  It's still pretty lucky, though, that we only do Christmas once a year!

~Jess

In Which Connor Meets The Green Eyed Monster

Hey look, I have Internet that works!

Well, sort of anyway.  We'll see how long it lasts.

My article for Hopeful Parents went up (it's scheduled) yesterday, so you can find it here.

Jeremy is no longer puking up everything, which is lovely although Connor is rather disappointed by this.  He's had to find other ways to entertain himself instead.  Right now he's kind of ticked at us though, because we spent time with his arch nemesis yesterday and today: also known as That Baby.

Yes, Connor is extremely not okay with children under the age of two or so at the moment.  Well, scratch that-- he's perfectly fine with them as long as they are on the other side of the room, being held by their parents and not his, and also not touching any of his toys.  Actually Jeremy and I are not even allowed to look at That Baby. 

But today there was some babysitting going on, so we were not only looking at the dreaded interloper, but we were touching, playing with and (horrors!) holding That Baby.  It was probably a good thing that Connor does not have access to weaponry, because if the look on his face was any indication he did not exactly have That Baby's best interests at heart.  Luckily That Baby was blissfully unaware of the whole situation and continued being a ridiculously adorable bundle of wiggly slobbering cuteness. 

We might have just a slight jealousy issue on our hands.

Connor is the same way to a lesser extent at therapy now.  He may not want to play with any of "his" toys at therapy, but heaven forbid another child should come in and start playing with them.  Suddenly he wants all of them back; he still doesn't want to play with them, he just doesn't want anyone else playing with them.  When his request for all of the toys is denied, he then informs us exactly what he thinks of That Kid who is infringing on his territory.  Sometimes it's sort of a good thing that the general public can't understand his sign language, because we might have some angry parents on our hands.  He's not exactly flattering their children.

I'm glad to start seeing some of this because it shows that he's still making strides developmentally.  But I'm sort of glad we're adopting a child older than Connor, because I like his smiley face a lot better than his growly, pouty one!

~Jess

In Which My Computer And Jeremy Simultaneously Explode

This started out as a fairly long blog post, but then my computer decided that it didn't like me anymore.  So now it is a short blog post because I'm about out of patience with rewriting it.  It was probably the most fantastic blog post ever, too-- that's probably why the Internet rejected it.  The world just wasn't ready for that kind of awesomeness.

Anyway, Jeremy spent a good portion of last night throwing up, which was terrific.  Possibly he ate a cheeseburger with a side of food poisoning or he's caught the same bug that I had last week.  Either way he is not having a particularly fun time at the moment-- he's not nauseous any more (thank goodness) but he's all achy and just feels generally awful.  Hopefully he'll feel better soon.

Connor hasn't had any more seizures and seems to be doing fine, so that's a very good thing!  Jeremy's off of work for the holidays and the little guy has been really enjoying having him around.  Unfortunately he thinks that the noise his daddy makes while throwing up is hilarious and keeps asking him for "more."   No doubt he believes that the extremely loud and horribly noises Jer is making are a fun new game for his personal entertainment.  Oh well.  Otherwise the kid's been relatively well behaved.

That was pretty much the jist of the blog post, only it was way funnier and longer and stuff.  Also it had a duck in it.  But I'm not even going to try and recreate it, because the universe would probably explode or something.  And nobody wants that.

~Jess

In Which Connor Has Another Seizure

Connor decided to have another seizure this morning, which was fantastic.  I suspect that it's either a combination of holiday stress or that he's coming down with a cold.  Neither option is a particularly wonderful one, but that's kind of how it goes I guess.  I gave him a dose of Ativan and though he was obviously tired and pretty quiet otherwise he had a good rest of the day.

I also felt a little bit under the weather today-- I've been having a little trouble with a persistent cough and feeling like I'm not able to draw a full, deep breath.  I'm unsure if that's due to my illness hanging on or the massive number of hits I took to the ribs and sternum this week.  I'm going to have a glorious bruise right in the middle of my chest from a particularly vicious derby move called a "can opener" I experienced firsthand earlier this week that will unfortunately be way to risque to show off to anyone.  I'll have to stick to the ones on my arms.  For some reason I have five or six on my right arm but only one on my left.  I'm going to have to start asking the girls to hit on the other side to even me out!

I still feel about 800 times better than I did earlier in the week, though, so I suspect the cough and whatnot is due to the bug I had and I'm mostly over it now.  Skating while sick was an interesting experience-- and not one that I want to make a habit of-- but I think it'll help me be a better player in the long run because it teaches me how to keep moving when I'm tired and crabby and whatnot.  I'm sure if I make a team there will be times when I really don't feel like skating but need to do it anyway.  This was good practice for that.

I'm hoping that Connor manages to avoid catching another bug, though.  He doesn't need any more practice in being sick!

~Jess

In Which Connor Picks Out An Extremely Practical Gift For Everyone

Connor has been doing this adorable thing again where he sticks two fingers up his nose-- one for each nostril-- and then just looks at me and grins.  If that doesn't get a good enough reaction out of me, then he starts grinding his teeth because he knows that one will make me respond, even if I'm just pressing his cheeks to get him to stop.  The kid has got me pegged and knows just how to push all my buttons!

He's been unhappy with me because instead of spending the afternoons playing, we've been going shopping for family Christmas presents.  I've been giving him more say in picking out presents this year now that he's old enough to have an opinion, and it hasn't been working out too well.  This is because he doesn't want to choose between the options that I give him; apparently they are all horribly drab and boring.  He's got the perfect present picked out for absolutely everybody in the family.

He wants to get them all the 50 foot high Christmas trees in the middle of the mall.

Despite my attempts to convince him that not only is a 50 foot high Christmas tree terribly impractical for our house, but it would be absolutely impossible to ship to everyone else even if I used a whole mess of flat rate boxes, he is convinced that I am just being mean and that the entire world needs a gigantic Christmas tree covered in ornaments the size of Connor's head. 

"Want!  Want!" he says every time we go past. 

"Daddy want!" he'll sign when I tell him that we're not taking it home, because surely I'll let him have one if Daddy wants it too.  And a regular Christmas tree with normal sized ornaments on it just won't do-- he turns his nose up at those pitiful seven or ten foot high trees.  Apparently Connor has decided that we need to go up to the local temperate rainforest and pick ourselves out a Sitka Spruce, and he's not taking no for an answer.

I'm not sure how he expects us to get it home.  I'm not strapping one of those things to the roof of my car.

So since I am being so obviously and unreasonably horrible to him by not attempting to purchase a 50 foot high tree for us and all our loved ones, he's been doing a whole lot of the finger-up-the-nose thing, and the grinding-the-teeth thing, and the thing where he scrapes his thumb nail across his two front teeth and so on and so forth.  I can only content myself with the fact that I am pretty much finished with my mall shopping, so hopefully he'll resign himself to having an ordinary, boring Christmas tree that, you know, fits inside a house.

Silly little guy!

~Jess

In Which I Have A Sequiny Disaster And The Cats Are Extremely Helpful

Today I was working on the Stocking Of Doom and I accidentally dropped my tub of sequins and beads on the floor.  Since I keep the sequins in an extremely cheap plastic Tupperware container, of course the lid popped off and about 800 sequins and beads scattered across our laminate floor. 

The cats came running, of course.  We should probably skip what I said at that point, because it involved many words not appropriate for a general reading audience. 

So there I was, frantically trying to pick up as many sequins and beads as I could (they aren't particularly easy to pick up with your fingers, by the way) while fending off the cats at the same time.  Evidently they thought my sewing supplies were an amazing new sort of bug that needed killing, and that instead of collecting them back into the container what I really should have been doing was chasing them all under various pieces of furniture.  They proceeded to model proper behavior for me.  Repeatedly.

So now I'm finding surprise sequins all over everything in my house.  I've found them stuck to my pants on at least three separate occasions and one showed up mysteriously in my sock drawer.  These things are worse than burrs.  I'm also not walking barefoot right now because those little clear beads hurt when you step on them at just the right angle.  So I'll be adding vacuuming to my list of things to do tomorrow.  Hopefully I'll be done with all of the sequiny-and-beady parts of this stocking by mid-morning and I won't have to go search the couch cushions for another stray gold or green sequin to finish things off.  Then I'll just need to line the stocking and put the whole thing together, and I'll be done!

Just in time.

~Jess

In Which I Feel Much Better And Connor Keeps Learning

I felt so much better today.

Pretty sure I'm over the worst of things, because I kept all my food down today and everything!  And also I could do things like breathe and stand up and stand upright and not feel like I was quite possibly going to die at that very second.  So that was good.

Connor had speech therapy today after school.  We've been working a lot with the iPad in there, and it's interesting to see the progress he's making.  Now when we ask him to make choices with his Proloquo2go program (the augmentative communication app), he'll consistently eye-point to the picture he wants, and he'll hover his hand over it.  He still won't touch the screen without assistance, though, even though he's perfectly capable of doing so.  I'm wondering if he thinks that the pictures might have different textures or something.  And if we're showing him a picture of something he has a sign for, most of the time he'll just look at us, do the sign and then get mad if we make him touch the picture anyway.  I think he figures that he's already gotten his point across.

A few of the programs he's willing to touch on his own, though-- like his bongo app (King Bongo Mini)-- and I think he's making really good progress towards being more confident about touching it.  He's learning that a full hand slap or the heel of his hand (which he uses to manipulate most of his toys) doesn't work for the iPad and so we're starting to see him isolate his fingers more.  That's a skill we'd definitely like to encourage, and hopefully he'll translate it to activities other than the iPad!

That's my big boy!

~Jess

In Which I Am Still Sick

So today I was planning on being all efficient and stuff-- Joanna was coming over to watch Connor and I was going to finish up all of my Christmas shopping, run a bunch of errands, etc.

Instead I spent the vast majority of today doing strenuous activities like sitting upright in a chair and trying not to get snot all over the pages of my book when I sneezed.  Because as I predicted yesterday, I felt miserable.  So no Christmas shopping was done; the only errand I managed was to drive over to our storage unit and get out a few of our decorations so we at least have stockings hung up now.  I did do a lot of productive work on my nephew's stocking, so at least the day wasn't a total waste.  I've finished up the pears and moved on to the partridge, who is coming along much more quickly.  I have named him Roasty and am picturing him served with a nice sage dressing.

So my nephew will have a present.  But everyone else is getting whatever I can find around the house for Christmas.  I have toothpicks.  Everybody likes toothpicks!

So as a result of being sick derby practice was sort of interesting.  I was pretty good for about the first half, other than not being able to breathe because my nose was all stopped up and I had a mouth guard in.  And then the second half things sort of started going downhill because my stomach decided it was going to being traveling in the opposite direction from the one I was skating and I ended up throwing up all over my wrist guards, which stinks because I just washed all my pads.  Once I got down to dry heaves I was a little loopy but okay except shortly thereafter practice was over so it was a moot point.

And then I made the mistake of drinking a bunch of water and threw up in my helmet on the way home.  So that was fantastic.  On the plus side, the helmet is much easier to clean than the interior of my car.

Anyway, if I can make it out of this chair (which may or may not happen) I'll be going to bed now and really, really hoping I feel better in the morning. 

~Jess

In Which I Am Sick

I thought I was going to mostly miss catching the bug that laid Connor low all of last week-- I had a couple days of a scratchy throat but it disappeared and I thought that was it.  Well, by around 11:00 today my nose had gone on strike and decided not to work anymore, and my throat now feels like I've been snacking on broken glass between meals. 

I don't recommend broken glass as a dietary supplement, by the way.  It has very little nutritional value.

Anyway, we had respite care but since I felt lousy we spent most of the ensconced in a coffee shop where I worked on pears for The Stocking That Will Not Die and Jeremy read a book.  Then I went skating briefly, because sometimes when I'm sick exercising makes me feel a little better.  I'm figuring if this illness follows the usual pattern of such things tomorrow will probably be my worst day and then I'll be on the mend.  I'm hoping I'll be over this bug soon, because of course Connor feels great and wants to be entertained constantly.  Also I have Christmas shopping to do. 

In the meantime I'll be drinking a whole lot of tea with lemon and honey and trying to catch some extra sleep so I can feel better before the holidays are upon us.

Bleagh.

~Jess

In Which I Am Now The Owner Of Extreme Floofiness

I am now the proud owner of quite possibly the world's floofiest tutu.

Yes, I know that "floofy" is not technically a word.  But I think that pretty much everyone would understand what I am talking about once they take a look at that picture and agree that floofy is really the only way to describe it.  There are probably at least eight yards of tulle in this thing.

Our respite care worker Joanna gave this absolutely awesome pink monstrosity to me as part of her ongoing quest to convince me to choose a roller derby name somewhere along the lines of Glitter Sparkle Princess Barbie, which she thinks would be hilarious.  Needless to say this is not going to happen, because there is not a single mention of death or destruction in that name even though it is absolutely terrifying-- especially to anyone who has ever been subjected to one of the fantastic plastic princess's music videos.  If I used one of those as a theme song I could probably make the opposing team and the vast majority of the fan base flee in horror before the bout even started, thus winning the game for us.  It would probably not be so good for ticket sales though, so I'll restrain myself. 

Besides, Barbie doesn't dress in tutus anymore.  Barbie apparently dresses in outfits like this now.  Whoa, Barbie.  Put either the tutu or some pants back on, because no one wants to see that.

Anyway, while this tutu is pretty impractical for an actual bout I'll probably wear it to derby functions on occasion, because really who wouldn't want to wear a giant fluffy pink tutu and roller skates? 

But despite its awesomeness, I refuse to name myself Glitter Sparkle Princess Barbie.  Sorry, Jo-- nice try.

~Jess

In Which I Clean ALL The Things

I spent about seven hours today cleaning my poor, much neglected house.  Since Connor's been sick and I've been spending all my spare time after he's asleep skating instead of doing the dishes and/or cleaning up after myself, my house has been looking steadily shabbier as a result.  I think usually my house tends to be a reflection of my mental state; the more stress I've got piling up the higher the resulting piles of clutter.  Now that Connor is feeling better and thus my worries are cleaned up, it's time to clean up the physical side of things too!

But the first thing I did was go to the bookstore and coffee shop.  One has to prepare oneself for this sort of cleaning job.  It's important.

I was helped along in my quest for cleanliness by the fact that Jeremy got to leave work early today, so he could watch the boy for me while I sprayed everything in our house that wasn't moving with some sort of cleaning solution.  He knows to keep out of my way when I start brandishing dust cloths with that sort of gleam in my eye.

I finally ran out of steam around six in the evening, which is when Joanna came over to watch the boy so Jeremy and I could go out.  Our first stop was the bookstore, and then after dinner we went to a coffee shop.  The fact that I had done both earlier in the day was completely irrelevant.  Jeremy and I will probably continue to buy books until we are forced to build little tunnels though them to navigate around our house and we perish when we accidentally bump into a wall of them and there's a cave-in. 

It could totally happen.

Anyway the house is finally looking halfway decent again, and I'll be working on the rest of it tomorrow.  I still have to do all the mopping and work on decluttering our bedroom and our master bathroom, which currently have every available horizontal surface covered in bits of paper, books (of course) and detritus, but that hopefully won't take me too long. 

And then I can enjoy the bliss of a clean house and a peaceful mind!  Not that it ever lasts very long-- I get complacent and let it all build up again-- but I'll make the most of it while it lasts!

~Jess


If you don't know what that title is in reference to, you should go look at this blog.  Pretty much this is my stance on cleaning and adulthood responsibility in general.  Also it is hilarious.

In Which Connor Is Great And I Will Possibly Never Move Ever Again

Connor was completely back to his old self today!  I'm so glad that he's completely over the bug; he made it through the whole day with no seizures and no temperature at all, even without the Tylenol.  Apparently that crazy day where he spiked up again was those germs' last gasp before expiring for good.  Thankfully he doesn't have any sort of secondary infection, and we managed to stay out of the hospital!

That means Connor gets to go to school tomorrow, which makes me extremely happy.  Because I love this kid to death, but I also love my precious, blissful alone time, which I will be making full use of tomorrow.

If I can move tomorrow, that is.  Tonight was our endurance practice for roller derby, and those usually leave me the next morning feeling like my legs and rear have been beaten with a sack full of quarters.  They are some serious workouts.  So provided I can manage to get my muscles to function enough to actually get me out of bed, I'll enjoy the day doing a nonstrenous activity like attempting to bend down far enough to tie my shoes.  Trust me; it's a challenge.  I'm still having ridiculous amounts of fun, though, and I take solace in the fact that if I keep this kind of workout up I'll have a tush that's finally back up where it was before I had my kid. 

I have finished all of the leaves (finally!) on the stocking I'm doing and have now moved on to pears.  Really this tree has a ridiculous number of perfectly ripe pears on it that are completely uniform in size and color.  I sort of want to sew a little worm on one just because I can, but since it's a gift for somebody else I'll restrain myself and stick to the kit.  Really I'm not sure the world is ready for the kind of stocking I would design.  It would probably involve velociraptors.  Also maybe a duck.  Because ducks are awesome.  But not on the same stocking, because then the resulting tableau would probably no longer be appropriate for children, even if I covered all of the blood in red sequins.

You know.  To make it festive.

~Jess

In Which Connor Is Suddenly Fine

Today was so much better than yesterday.  Instead of a lethargic, crabby, seizing child I had an energetic, loud, happy one.  He didn't have a single, solitary seizure today.  Not one!  Who knew Tylenol could make that much of a difference?  Seriously, Connor was all "What, sick Mom?  Me?  I have no idea what you are talking about.  Now fetch me more toys.  All the toys."  I swear he was making up for lost time today; he didn't nap at all, was extremely vocal and had about a ten second attention span.  It was nice to have my boy back, even if he kept me hopping!

This kid is the king of dramatic turn-arounds.

So I think tomorrow I'm going to take him off the Tylenol and see whether or not his fever returns.  If he's fever-and-Tylenol free for the day, then Friday he can go back to school.  I cannot tell you how excited I would be about him going back to school, because after a week of sitting in an armchair for eight hours a day with a kid draped over my chest I am more than ready for some quality time with a book and a coffee shop.

Of course what I should really do with that time is clean the house.  Because after a week of Connor being sick and a couple of days of me feeling under the weather, the house currently looks like a whirling dervish went through and left a wide swath of destruction in the form of dirty dishes, laundry and general clutter.  We had a couple of people stop by unexpectedly in the past few days and I was horribly embarrassed by the state of my house.  I'll knuckle down and give it a good scrubbing now that Connor is (hopefully) over the worst of everything so it's fit for company again, but I'd like some good old fashioned alone time first!

I'm so, so glad that the little guy is feeling better!  I'll be hovering over him with the thermometer tomorrow, and at the first sign of his temperature going up we'll pull out the goopy purple stuff again.  Hopefully he won't need it though.

He sure likes to keep me on my toes!

~Jess

In Which Connor Has A Relapse

Well, that didn't go particularly well.

Remember how yesterday I said that I thought Connor was on the mend?  I apparently should have thought about my amazing jinxing powers before I said that, because it sure came back to haunt me today.  I finally woke him up this morning at 11:00 because I was afraid he'd sleep the day away.  What I think was actually happening is that he'd probably had at least one of those seizures where he's still breathing (and thus didn't set his apnea monitor off) and so he was postictal rather than reluctant to get up.  At any rate, he was up for about an hour and then had the first seizure of the day that I saw.

He fell asleep afterwards and was out cold for about three hours.  Then he woke up and within an hour he'd had three seizures.  At that point I finally thought to take his temperature.  It was 102.9 degrees.  He'd had a normal temperature for the second half of Sunday and all of Monday, so I'd stopped giving him the Tylenol midday yesterday, not even thinking about the possibility of him having a relapse.

I plugged him full of Tylenol and gave him an Ativan just to hold off the seizures until his fever had the chance to go down.  Currently he's running normal, but it looks like I'll just have to give him Tylenol every four hours around the clock until he's got this bug completely licked because the last thing I want him to do is go status at two in the morning.

The sudden temperature jump is troubling because I'm not sure if that means he's caught some other bug that we're now going to have to fight through, if this bug is particularly resilient and his body is having trouble fighting it, or if he's got something else going on like a UTI or an ear infection that he'll need antibiotics for.  At this point he's been sick for five days and he's had a grand total of sixteen seizures over that time period.  We've been trying to keep him out of the hospital if at all possible, but if the Tylenol and Ativan can't keep him in check we're going to end up back there.  The only reason we've stayed out thus far is that pretty much all of these seizures have been the still-breathing kind.  Sixteen non-breathing seizures would probably land us in the PICU pretty quickly. 

Oh, and also I feel really guilty that I didn't think to check his temperature earlier, before he'd had all those seizures today. 

At any rate, we'll see how tomorrow goes.  Connor didn't have any more seizures after the Ativan and Tylenol, and he actually woke up a little bit for Jeremy in the evening, though he was very shaky and obviously under the weather.  Depending on how things progress tomorrow, we'll see whether or not we land in the hospital again.

I hope he can beat this bug soon!

~Jess

In Which Connor Is Still Sick

So today was another glorious day of needlepoint and laundry rotation.  The good news is that I think Connor is over the worst of it; he only had two seizures today, which is a definite improvement.  However, rather than spending most of the day sleeping like yesterday, today he spent alternating between throwing up and clamping on to me like one of those lampreys.  I mean literally-- he just wanted to sit in my lap and stuff fistfuls of my clothing into his mouth.  He refused to be distracted by any of his chew-appropriate toys, so after an hour or two I had Connor-sized drool marks all up and down my sleeves.  I'm wondering if maybe he had a bit of a sore throat and didn't want to swallow, so he was just using me as a giant spittoon.  Well hey, what are mothers for, right?

And then any time I moved more than three feet from him he'd cry like I was abandoning him forever.  It was glorious.  Oh, and did I mention that now my throat is starting to feel scratchy?  If I am getting sick, I calculate that my worst day should be right about the time that Connor is feeling fully recovered, bored out of his mind and ready to play.  That's usually how that sort of thing works out.

So I did another eight hours or so of needlework, which was made especially fun by needing to make sure that the felt stocking remained throw up and/or drool free.  There were a few tense moments.  It's likely I'll be doing more of the same tomorrow, but I think that hopefully we're over the worst and he'll be able to return to his normal activities by Wednesday; we'll just have to see.  He was starting to perk up quite a bit by the time Jeremy got home from work.  I'd like him to be completely seizure free for at least one day before I send him back-- I figure that will be the marker that tells us he isn't sick any more, since it's the first symptom that shows up now when he's the least bit under the weather.

I can't even tell you how much fun cold season is going to be every year from now on.  Oh well-- it'll keep us on our toes, I guess!

~Jess

In Which Connor Is A Sicky Sadkin And I Play With Needles

I spent about seven hours today sitting in an armchair sewing fiddly little individually-sequined leaves onto a felt applique stocking I'm making for my nephew while keeping one eye on Connor, who was passed out on our living room floor.  I set him up there on a pallet made of about twenty blankets (if there's one thing we do not have in our house, it's a shortage of blankets) because I'd walked into his room earlier in the day to check on him and discovered he was in the middle of a seizure.  His apnea monitor didn't alarm because he was still breathing during the seizure.  So I moved him out into the living room and settled in for the long haul, where he had a total of three more seizures over the course of the day.  So obviously he is not feeling so hot right now.

For the most part Connor slept.  He was only awake maybe two of those seven hours, though apparently later in the evening he perked up a little.  And by 'perked up,' I mean 'switched from seizing and sleeping all the time to being awake and throwing up all over the place.'  Looks like I'll be doing quite a bit of laundry tomorrow. 

I wasn't there for any of the throwing up and whatnot in the evening because I was doing derby related things.  And yes, I went to derby even though Connor was sick.  This may make me an evil, horrible mother, but keep in mind that I'm an evil, horrible mother who'd just spent seven hours sitting in a chair watching my son breath and pricking my fingers full of holes.  Any time I needed to go to the bathroom I had to either get Jeremy to watch Connor or drag the whole mess into the bathroom.  Not fun.  So I was just a wee bit anxious to get moving after a day spent doing that sort of thing.

As the odds of Connor going to school tomorrow are virtually nil, I'll likely be spending most of tomorrow sewing eight billion more little leaves onto this stocking while Connor rotates through all of his bedding and clothing.  I've gotten to the point in my sewing where I really want to be done but have to slog through the rest of the stocking anyway, and I hate little leaves and start rationalizing ways to get out of sewing any more on.  Things like "this is a partridge in a pear tree stocking, but it's a Christmas song so it should be the middle of winter, right?  What pear tree has leaves in winter?  It should be a partridge on a stick!"  And then I start wondering about why, for that matter, the tree has any pears on it (which is the next fiddly bit I'll be sewing) for similar reasons, and aren't partridges mostly ground birds so what was it doing up in that pear tree in the first place, and then things just go downhill from there.  Really how that song is illustrated on this stocking makes no sense.  I think they just put all those pears and leaves on there as an excuse to use more sequins. 

I can't stop, however, because it needs to be done by Christmas.  Having no Christmas stocking would be a terrible thing for my adorable nephew's first Christmas.  And also I will sew every last sequin on if it kills me just because now they've made me mad and it's a challenge.

The next kid I sew a stocking for is totally getting an athletic sock with their name on it, though.

~Jess

In Which Connor Has The Lowest Fever Ever And His Brain Cells Go Nuts

So after Connor's third seizure today I took his temperature.  It read 99.0, which to anyone other than Connor's brain cells isn't even close to a fever.  Connor usually runs cool-- around 96 or so-- but that's still a really pathetic attempt at a raised temperature.

But not to Connor's brain.  I believe that Connor has a little cluster of "inciter" brain cells hanging out in his brain stem.  These are the 2012 believers of the neuron world.  When Connor's temperature goes up a whole three points, all of the rational brain cells are going about their normal business.  "Well, it could be the start of a fever," they say, "but he could also be exercising or something."

The radical cells in his brain, though, take the temperature change to be The End Of Life As We Know It.  "This is IT," they scream, "we're DOOMED," and begin frantically running around waving their dendrites in an alarming fashion and firing randomly into the air.  All this screaming and weaponry and whatnot makes all the other brain cells freak out, and then there's a riot and general havoc ensues until the seizure medication manages to shoulder its way in and convince everybody to chill out.  You would think the other brain cells would have figured things out by now and learned to ignore them, but apparently the other brain cells are really gullible because they fall for it every time.

Anyway, so Connor, with his measly 99.0 temperature, had four seizures today before the Tylenol really kicked in and his brain stopped going berserk.  Needless to say we did not go to the parade or the zoo lights.  Instead we stayed at home and one or the other of us hovered over our child while he acted, in between seizures and seizure-induced naps, like a kid who is just starting to think about maybe being sick.  I spent a lot of time doing needlework, as I can't hover and do housework at the same time.  It was a largely unproductive day.

We'll see how he's doing tomorrow; hopefully this will be a bug that's over quickly and we won't end up in the hospital again like the last time Connor was sick.  Keep your fingers crossed that the Tylenol will keep those doomsday brain cells in check!

~Jess

In Which I Discover My Jinxing Abilities

So today after Jeremy got home I announced to him that Connor hadn't had a seizure for two whole weeks!  I'd been telling friends that on the phone all day. 

"That's the longest he's gone without one for a long time," I said.

"Great job, big boy!" Jeremy told Connor.

Apparently Connor thought we were giving him a suggestion, because less than twenty seconds later he had a seizure.

He didn't stop breathing-- he just got really pale, had trouble breathing and did a bit of jerking.  But we were not particularly thrilled with this lovely development because we were hoping he was done with seizures for a slightly longer period of time.   Like forever.  And also I evidently now possess the power to jinx our son.  Glorious.

He went down and took about a two hour nap.  Then he woke up and had another ten second or so seizure just to really freak us out. 

I'm sort of hoping he's getting sick so I have something else to blame besides the medication not working, and that makes me feel horribly guilty for wishing illness on him.  Oh well.  He was fully recovered by bedtime, and we'll just have to see how the weekend goes.  These things always seem to start up on weekends, for whatever reason.  I think he likes to test the resident doctors who are usually on call.  No doubt they love hearing from us by now. 

We're supposed to have a pretty busy day with Connor tomorrow, involving a Santa parade downtown and an evening light show at the zoo.  I may decide to cut one (or both) of those out depending on how the little guy is doing.  In the middle of a crowd on a street that's been shut down would probably not be a particularly fun place to call the paramedics from. 

Hopefully tomorrow will be seizure free.  I probably shouldn't mention it to Connor, though.  He might take it as a challenge, and I have no desire to end up back in the hospital any time soon.

~Jess

In Which Connor Finally Goes To Sleep And I Skate A Bunch

I just got back from my latest roller derby practice.  Connor is (thank goodness!) asleep, so hopefully we're past the worst of this lovely medication-induced insomnia.  I'm really glad that he's getting more shut-eye because I was beginning to worry about him.  There's only so many days you can run on four hours of sleep without having some issues.  Also this means I get to sleep now too, which makes me extremely grateful as I was starting to get a little incoherent. 

Connor had a great day today, even though he took out his hearing aids in the car before school and I didn't discover them until I almost ran them over with the wheelchair while putting him back in the car, which would not have been pretty.  That thing is heavy- especially when it's got an oxygen tank on board.  At any rate he made out okay at school without them though, and I'll just have to remember next time to attach them to his shirt and not his new winter vest.  It's made out of that slick waterproof material and apparently he's able to get the clip off pretty easily. 

While Connor was at school today I got another massage-- luxurious, I know!  Trust me when I say that I badly needed it, though.  Also these are medical massages, which are not necessarily the most relaxing things in the world-- especially when Joanna does that thing where she jams a couple of fingers into my armpit.  Ow.

They do, however, make my neck and back feel a lot better, even if they are a little uncomfortable at the time.  That lady knows what she's doing!

Then this evening of course I promptly went and negated all the time and effort she'd put into getting me loosened up again by falling repeatedly on all the parts she'd worked on.  I'm still having a blast at derby though, even if I have a ton of new bruises to show for it!  I think all of the extra skating I've been doing is finally starting to pay off.  It used to be that I was exhausted thirty minutes into our two-hour practice, but now I feel like I have a lot more energy and I'm not getting left behind anymore when we're supposed to be skating fast.  That's not to say that I don't still have a long way to go before I'll be ready to actually play in a bout, but I feel like I've really improved since I started.  Of course, when I started I couldn't skate more than six feet without falling down, so that probably isn't saying much.  But I find myself really looking forward to being able to put on my skates every day, and I'm still just as much in love with this sport as I was the night I discovered it. 

I think one of the best parts is getting to skate with such an awesome group of girls.  We compare bruises, swap stories about our personal lives, encourage and pick each other up, and then beat the everliving crud out of each other on the track. 

It makes for some odd friendships, maybe, but it's a heck of a lot of fun!

~Jess

In Which We Have A Very Busy Day

I woke Connor up late this morning since he made poor choices about how late he was planning on staying awake (midnight) and I needed enough sleep to be able to drive.  Then we were off to physical and occupational therapy!

I think we need to start being a little harder on him when it comes to working on things, because he's learned how to work the system.  Whenever he doesn't want to do anything he goes all cute and snuggly and of course we just melt and let him get away with murder.  He decided that he wasn't interested in therapy today, so he turned the cuteness up to full wattage.  When that didn't get him out of the activity we were doing he decided that physically resisting any effort made to get him to touch anything was a good secondary technique.  We were trying to have him decorate a snowflake for our therapy center's Christmas party and he was reacting like the snowflake was made out of carbolic acid.  He was seriously uncooperative.

Oh well.

We went from there to the library, where I returned all of my long-overdue books that have been sitting on the coffee table for the last month waiting to go back.  We of course had to stop by the children's section so Connor could ogle their fantastic LED lighting on their ceiling that looks like stars.  Then he got to choose a book, I picked up one (or two, or five) for myself, and we were off to the pharmacy, storage unit, grocery store and a number of other places I needed to check off my errands list.

I didn't even realize it was the first of December until about halfway through the day-- the holiday season really snuck up on me this year!  I haven't even really gotten started on my Christmas shopping and I have eight thousand things to do. 

Guess I'd better get my rear in gear and start trying to catch up!

~Jess

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