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 Connor Has An Adventure And I Put Batteries In My Camera

Look-- I put new batteries in my camera!  Aren't you all proud of me? 

Thanks for putting up with my blog in its pictureless state for so long.  I know ya'll don't really come to read my rambling posts; you come for the adorableness that is the little guy!  So here he is in all his glory, complete with fuzzy Cookie Monster slippers.

It was pajama day at school today.

So there he is in his shiny new wheelchair with his rocket pajamas on.  He was a little bit confused about pajama day when I told him about it, but once he found out that he got to wear his Cookie slippers to school suddenly he didn't have any objections.  He loves those things!  Mostly I he likes the way they feel-- he spends a whole lot of time very carefully petting his feet when they're on. 

He's sporting another festive accessory-- a big ol' lump on his noggin!  He managed to launch himself out of a chair today at school and broke the fall with his face.  Poor little guy!  So he's got a large goose egg on his forehead and some friction burns down the side of his nose.  Maybe instead of being a yeti he should have picked a prizefighter costume!  I suppose these sorts of bruises and scrapes are part of most kid's growing up, but it freaked me out a little bit because Connor doesn't get hurt very often!  It obviously looks far more dramatic than it actually is though, because he felt absolutely fine today and it didn't seem to bother him at all.  Oh well-- the swelling was already going down by the time he went to bed tonight.  I should mention this chair was a whole foot from the floor, and I'm not totally not upset with his teacher or any of his aides-- they are awesome!  Could have happened to anybody. 

I'm not feeling so hot right now either, to tell you the truth.  My nose is pretty stopped up and I'm doing a lot of coughing; since I don't have allergies I'm pretty positive I'm sick.  So far Jer and Connor seem to be feeling okay, and I hope they stay that way!  I'm hoping that this'll be a 24 hour bug and I'll be feeling better tomorrow; we'll just have to see!

No word on whether or not I've made the derby team yet; I'm really hoping I hear something tomorrow because I am going nuts!  I'd just like to know one way or the other, you know? 

I hate waiting.

~Jess

In Which I Have Derby Tryouts And Sneeze A Lot

So I spent most of today extremely nervous, because roller derby tryouts were tonight.  I'm not a big fan of being the center of attention and/or performance tests, so this sort of stuff really freaks me out.  I'd much rather blend into a nice group, where I can happily be a team player and let somebody else be the superstar.  That doesn't work too well for tryouts, though. 

To make up for my less-than-star-quality skill level, I wore pink knee socks with mustaches on them.  Because everybody knows that socks with mustaches on them are awesome, right?

Um, anyway I think I did okay, but it's difficult to know with these things!  All of the girls were fantastic and everybody did a great job, so I'm sure that the derby coaches have some tough decisions to make.  But it was really fun to go through this whole thing whether or not I made it, and to be honest I'm kind of proud of myself for sticking with it and trying out even though I haven't been skating for very long!

In other news, I'm pretty positive I'm coming down with a cold.  The back of my throat is all itchy so I keep coughing, and I've been sneezing up a storm!  I don't get sick very often and usually aren't too miserable when it happens-- though I probably just condemned myself to some sort of horrific illness by saying that.  My main concern is keeping Connor from getting sick, though having any ability to prevent that may be wishful thinking on my part.  He's already had a bad time of it this year though, and I'm worried that from now on getting a cold or any sort of fever may put him back in the hospital.  So I'll be doing as much hand washing as I can and trying not to sneeze too much around him.

I can't protect him from all the germs in the world, but I'm going to do my very best to protect him from mine!

~Jess

In Which Nothing Happens For Once And I Like It

Okay this is going to be short, because quite honestly nothing happened today.  And really, that was nice.  I like it when it's boring around here, even if it doesn't make for particularly fun reading.  Especially after all the excitement we've had this month; I'd actually like to have at the very least several boring days. 

That would be very nice.

Anyway, so Connor decided that it would be a ton of fun to stay up until two in the morning last night, which was fantastic.  I was thrilled.  Then he slept in until nine in the morning, and when we went to therapy decided to nap on the swings.  We actually had to end occupational therapy early because he kept trying to fall asleep instead of work.  So I ate a quick lunch with him and then we went home, where he went down and slept for three hours.  Of course it's now past 10:00 in the evening and he's still awake, so I can probably expect a repeat performance tomorrow. 

Glorious.

I just got back from another long evening of skating; my tryouts are tomorrow night and I'm already nervous!  Regardless of how things go, I'm glad that I took the plunge and went to roller derby bootcamp; it was a fantastic experience and I'd do it again in a heartbeat! 

And that's all I've got.  See-- boring!  I don't really have a problem with that.

~Jess

In Which Connor Is Happy And I Eat Cancer Cookies

Well all my fears about Connor's medication change were ungrounded, because he did beautifully today!  He was really tired at first but soon perked up at school, and then for the rest of the day I had my happy-go-lucky kid back.  Of course the insomnia is back too-- it's currently 11:26 at night and he's still awake and happily chattering away to himself-- but maybe that means he'll sleep in a little bit in the morning and I can go back to bed after I give him his morning meds.  I'm so glad that he seems to be feeling better; splitting up his Lamictal dose has obviously made a difference.  He didn't have any seizures today either, so that makes me pretty happy!

I'm up so late not because Connor is awake (though I can't sleep if he's not asleep so I'd be up regardless) but because I just got back from the skating rink.  One of the truly awesome things about doing bootcamp is all of the awesome girls I've gotten the chance to meet and hang out with over the past month, and a group of us decided to skate together to practice for our big tryouts on Thursday.  I'm hoping that we'll keep in touch whether or not we make the New Bruiser Squad, because all of them are a ton of fun!  At any rate, I feel a bit like a teenager again in that I'm keeping some really late hours, only unlike my teenage self I now find I need naps during the day to catch up on the sleep that I'm missing.  Somehow I can't function on 6 hours of shut-eye a night anymore!

So I'll be going to bed as soon as I finish blogging, and drinking my tea.  And eating my cancer cookie.

Yes, my cancer cookie.  Our local grocery store is raising money for breast cancer awareness, and so they have all of these products adorned with  ribbons, including the tasty sugar cookies that Jer picked up earlier today.  They have little tiny candy pink ribbons sprinkled all over them, so really, what else would you call them?  I'm sure Jeremy bought them just for the taste-- he's pretty addicted to the big soft grocery store sugar cookies-- but I probably would have picked some up if he'd missed them partially for the good cause, but mostly for the opportunity to tell people I'm eating cancer cookies.  And I figure that maybe if I say I'm eating cancer cookies they'll sound unappetizing enough that I won't have to share.

Sounds like a good strategy to me. 

~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

In Which We Have Another Adoption Announcement

So I figured now is as good a time as any to reveal the next stage of our adoption saga.  They say the third time's the charm, and since adoption referrals one and two didn't work out we're really hoping this one will stick.

So anyway, we're adopting a teenager!

Yes, I know we might possibly be insane.  But whatever kid we adopt would end up a teenager eventually anyway, and this girl seems to be a really great fit for our family, so we're taking the plunge!  Of course adopting an older child-- particularly a teenager-- comes with its own set of issues and concerns, but we've done our homework and feel like she's the girl for us. 

She's twelve years old right now, and she's currently living in an orphanage in Thailand.  She'll probably be thirteen or fourteen by the time we get her home, which should be either late 2011 or early 2012.  She loves school (her favorite subject is English), playing chess, watching Thai soap operas with her friends, and swimming-- though not in water over her head.  She has cerebral palsy which affects her lower limbs, but thanks to years of intensive physical therapy and surgeries is able to walk very well.  She's described by her teachers and caregivers as friendly and a hard worker.  She's a little shy and has a beautiful smile.  She's amenable to the idea of adoption, though she won't know about us for a while yet.

We're going to keep her Thai given name as her first name and give her the American middle name of Ellen.  It's a name that has sentimental value for us as well as a strong meaning, and is also easy to pronounce for someone who is not a native English speaker.  We'll let her choose what she wants to be called when she's here, but for blogging purposes she'll be Ellen; at least until she gets home and decides whether or not I'm allowed to blog about her.  She's old enough to have a right to privacy if she wants it.

We have a lot of information about her, and we can't wait to get her home!  I'm getting excited about all of the fun things I can do with a teenage girl; shopping, crafts, family game nights, cooking, going out to get manicures together, watching ridiculous chick-flick movies.  Jeremy's excited about teaching her how to ride a bike, building Lego creations with her (you are apparently never too old for Legos) and he's started playing chess against the computer so he'll be ready for matches against Ellen once she's here.  We're thinking we might want to home school her the first year so we can work on her language skills and have a few hours of bonding just with her while Connor's in school, so I've started looking at a curriculum for that.  Since I originally intended to be a teacher before having a very cute wrench named Connor thrown into the works, I'm excited about getting the chance to teach!  I'm also trying to learn as much Thai as I can before we go over so that I'll be able to hold a basic conversation with her without the need for a translating device or a go-between.  Hopefully we'll be able to keep her studies in Thai up as well; Jer and I could take classes with her and (if you count sign language) we might eventually be a trilingual family.  That would be pretty awesome, I think.

So we've already redone our homestudy to reflect Ellen's age and special needs, and we're back in the dossier process right now.  We're getting pretty close to having all our paperwork ready, and then we'll have to sit back and wait.  Forever.  I don't want to do too much with her room because she'll be old enough to have some say in that (decorating-- another fun thing we can do together!) but I've started thinking about basic furniture and whatnot, so once we finish up all the paperwork I'll have something to work on rather than just going crazy with waiting.  I might do that anyway, but at least she'll have a bed and desk before I do.

So here's to embarking on another new adventure!  We don't know exactly where we'll end up, but we're hopeful that things will go a little more smoothly this time and in another year or so we'll be a family of four!

~Jess

In Which I Have A Long Day And Write A Short Post

I just got back from watching a roller derby bout, and I had a blast!

But I'm also really tired, so don't expect this to be a very long post.  Connor, for some reason, decided to pick today as the day that he was going to be all tired and clingy again.  This is probably because I spent less time playing with him yesterday than I usually do, since I cleaned out the fridge.  So I spent several hours early in the day with a sad little boy snuggling against my chest.  Then I had to leave in early afternoon to go help set up for the roller derby bout-- I was volunteering, so I got in for free!  Jeremy drove with Connor in a separate car and got there right before everything started.  Poor Connor was extremely sad when they got there, but he slowly perked up and by the time Jeremy took off with him he was actually relatively happy. 

So I had a fantastic time watching roller derby with my family and friends, and it made me even more determined to get on a team!  My tryouts are next Thursday, so keep your fingers crossed for me!

~Jess

In Which Connor Is Now A Double Pirate

Connor woke up this morning with both of his eyes glued shut.

So he stayed home from school again today while we started drops in his left eye, too.  Thanks to said eye drops he shouldn't be contagious anymore tomorrow, but that's kind of a moot point since tomorrow is Saturday and there isn't any school.  He'll go back to school someday, I swear.  He's out of eyes to get infections in, so he'll have to come up with some new and exciting method of getting out of school on Monday. 

How did this kid even get pinkeye, anyway?  Nobody we know has it.  And once he's not contagious anymore, should I dress him up as a pirate with patches on both eyes-- a double pirate?**  I'm pretty sure that would be twice the awesomeness. 

Though it might be kind of hard for him to see.  He'd have to use radarrrrr.

Um, yeah.  Anyway, I spent all of today being hyper aware of the slightest itch or twinge in my eyes.  I stopped and looked in every mirror I passed, totally convinced that I was on the verge of developing pinkeye too.  I'm glad no one but Connor was home to see me because I probably looked really conceited the way I was studying myself every five minutes.  At any rate I have yet to develop any symptoms besides the ones in my head, so I'll be extending my paranoia into the next couple of days and then hopefully I'll be out of the danger zone.

Thankfully I did get to escape this afternoon; spending the better part of a week with practically no break from Connor is not really good for my sanity.  Don't get me wrong-- I love the little guy absolutely to pieces-- but quite frankly spending the majority of my waking hours with no conversationalists other than a non-verbal four year old with a 60 sign vocabulary is not great for my mental health.  When Connor is sick, I sometimes go entire days without talking to anyone besides Connor and Jeremy, and I'm pretty sure my conversational skills have suffered as a result.  This sort of thing is why I have a tendency to lunge at Jer and start desperately chattering at him the second he gets home.  It's not pretty, I can assure you.

So when our respite care worker Joanna came over I was very happy to get out of the house (once I'd finished cleaning out the fridge, which was a task I'd started before she got there and not one I wanted to leave half done) and escape someplace I could talk with actual adults.  Granted, those adults happened to be the pharmacist and the clerk at the local grocery store as with a child on quarantine I'd been unable to do my usual weekly errands, but when you've been deprived for a while a conversation about the price of chicken breasts suddenly seems amazingly interesting. 

Anyway, I ran my errands and then came back to the house and made a big batch of tomatillo salsa while Jeremy finished up at the gym.  Then we went out to dinner, which was lovely, and finished the night off (of course) at a bookstore and a coffee shop. 

So all in all it ended up being a pretty good day, despite the pinkeye and no school and whatnot.  I'm sure tomorrow will be even better!  Or maybe that should be tomarrrrrrow.

Sorry.  Couldn't resist.

~Jess



** Double pirate, all the way!  It's so intense!  What does it mean?

In Which Connor Is A Sort Of Pirate

My Internet has decided that it once again hates me, so this is probably going to be fairly short as I have a small window in which to work. It’s teasing me—blinking on and off again just as I am trying to save or publish things. This is not very wonderful. Looks like it’s back to the coffee shops for me!


Connor and I stayed home today, and for the first half of the day I had to soak open his poor eye every time I needed to put eye drops in it. I actually had to stick the kid in the shower and steam open the eye when he first woke up because it was absolutely glued shut. But the second half of the day his eye was looking much better; he could keep it open and I wasn’t having to wipe gunk out of it every ten minutes. It’s still completely bloodshot and horrible looking in the way that only pinkeye can be, but it seemed obvious that the medication was doing its job and that Connor was on the mend.  He squinted a lot with that eye, though-- so I decided he was a pirate and spent a lot of time singing him sea shanties and saying "Arrrrrr!" in a gruff voice, which he thought was hilarious.  He’ll get to go back to school tomorrow because he’ll have been on the medication at least 24 hours and won’t be contagious anymore. I’m tempted to make him a quick eye patch and dress him up in his pirate outfit, but that would probably require too much effort. Oh well.

I had my final night of roller derby bootcamp tonight, and it was a ton of fun! It’s been awesome getting to know everybody and getting the chance to learn how to move around on skates. We have tryouts next week, and I’m really nervous about them. Whether or not I make it onto the New Bruiser squad though, I’m really glad that I’ve gone out and done this. It’s been an absolute blast!

~Jess

In Which Connor Is Under The Weather Again

October has definitely not been Connor's month.

He slept in this morning until ten (he's still fatigued from the med change), which was a mistake on my part.  I'd gotten it into my head that he had PT and OT from eleven to one, when in fact he has them from ten to twelve and has had them that way for at least the last three months.  Apparently even though I got up at a decent hour my brain decided to sleep in.

I'm not winning any awards for competence today.

At any rate, when we got to therapy at eleven they had obviously filled the time with other clients because they assumed we weren't coming.  Luckily our speech therapist was free and so we decided to make up the appointment we missed yesterday due to Connor's giant screaming fest.  Connor was sitting at the little table in the therapy room refusing to make choices on the iPad when I suddenly noticed his right eye was really gunky.  I was kind of embarrassed that I'd missed that when I was getting him out of bed-- I figured it was just sleep in his eye.  A little later I noticed that it seemed pretty red, and there was a bright red line down one side.  We speculated that he might have burst a blood vessel from crying so hard yesterday.

When we got home Connor announced that he was sleepy, so I put him down for a nap.  He slept for another three hours, and when I finally went in to get him up, I discovered that his eye was now swollen and completely crusted shut.  So I called our appointment line to get him into the doctor.  All of the clinics at our usual military hospital were full for the next two days, so it was off to the urgent care clinic we went.

Yep.  Connor's got Pinkeye.

So he'll be missing yet another day of school while we wait for his new eye drops to work-- he gets one drop every four hours until the bottle is gone-- and hopefully things will clear up quickly and Connor can work on being healthy for a while. 

That would be a pleasant change!

~Jess

In Which Connor Is A Saddy Sadkin

Connor got his new wheelchair today!

Sadly, you will not be getting any pictures of it today, however.  This is because in addition to acquiring said wheelchair we also went up substantially on Connor's Lamictal today--the greatest jump so far-- and as a result he was not exactly in a picture-taking frame of mind.  The drug information on Lamictal mentions "irritability" and "mood changes" as potential side effects.  They failed, however, to warn me that Connor would turn into The Saddest Boy The World Has Ever Known.

Okay, I am totally not kidding about this either.  He was actually sent home from school today because all he wanted to do was sit in his aide's lap and cry.  Oh-- and throw up.  Nausea is another one of those glorious side effects.  Apparently Lamictal dose increases do not put Connor in a learning frame of mind.

So he came home from school at ten or so in the morning and I promptly put him down for a nap (drowsiness-- another side effect); he slept until a little before one in the afternoon, when he announced his lucid state by wailing into the monitor.  He calmed down a little bit while I was holding him, but lost it again when I told him it was time for him to go to speech therapy.  I called our speech therapist on the way there because we were fifteen minutes into our car ride and Connor was still sobbing like instead of going to speech therapy I had actually said we were going to have our eyeballs skewered with red hot pokers.  Julie, after listening to me talk over the little guy screaming in the backseat, wisely suggested we reschedule speech therapy for later in the week.

So we turned around and drove back to the house, where Connor took his second nap of the day.  I woke him up so we could go get his new wheelchair, and he spent most of the car ride there doing that little half-cry, half-whine thing that never fails to set my teeth on edge.  You know, where he'd cry for a second, and then glance up to see what my reaction was, and if I was looking at him immediately start crying much louder, but if I wasn't than he'd forget to cry for a few minutes until he realized he was supposed to be upset and start up again. 

When we got to the pharmacy, Connor informed the very nice man who was doing his fitting that he "hated him."  Then he announced that he didn't like his spiffy new wheelchair and wanted it to go away.  He signed "don't like" to every person we passed in the store for good measure.  Once our fitting was finished, the little guy actually forgot he was upset because he liked the additional height the new chair provides him in the car-- he was too busy looking out the front windshield to remember he was supposed to be crying.  But the second we got home he turned the waterworks back on, this time for Jeremy's benefit.  I put him down and he took his third nap of the day.  He perked up (of course) when he woke up and realized that his respite care worker was here to see him, and when I walked out the door for the adoption seminar we had tonight he was happily snuggled up to her as if absolutely nothing had been wrong for the entire day. 

The little stinker.

At any rate, I'm hoping that his body will adjust to this new dose quickly; I'd like my happy-go-lucky kid back instead of my current one who is doing a stunning imitation of Eeyore and Oscar the Grouch's love child.  Connor's able to hit notes when he's upset that make my teeth vibrate, and there are only so many hours of that I can erase by consuming massive amounts of chocolate.  I am also desperately hoping that today was indeed a result of the Lamictal increase and not because Connor is, say, getting sick again. 

Poor little guy.


~Jess

My monthly post for Hopeful Parents is up-- you can find it over here.

In Which We Have An Extremely Busy Time

Our Internet lives!

Apparently someone from our Internet provider had been mucking about in our utilities box earlier in the week and had knocked something loose, which disconnected our Internet.  So they sent a very nice man out to fix it, who informed us that there would be no charge.  Which is good, since their company broke it in the first place. 

Oh well.

We've had an eventful couple of days!  Yesterday Connor and I traveled down to visit the Farmer's Market in Olympia; I needed to start my Christmas shopping and was also running low on yummy smelling soap, which is a dire situation.  So we restocked on frothy, soapy goodness and then trolled the shops along Capital Way-- including the fantastic little toy store Wind Up Here off of 5th Ave, which is where we found the beginnings of Connor's Halloween costume.  They had the most glorious white fuzzy monster hat, which the little guy not only didn't object to being plunked on his head, but he actually enjoyed carefully feeling the soft fuzzy ears on it.  So Connor is going to be a Yeti for Halloween; a perfectly respectable Pacific Northwest sort of thing to be.  I'll be getting him a white sweater and some light colored pants and trimming the cuffs with fur, and we might have to find him some fuzzy slippers.  I think it'll be pretty great!

We were stopped at a street corner waiting for the light to change so we could head back to the car when Connor began having a seizure.

Let me tell you, there is nothing that attracts attention like doing mouth-to-mouth on a small child at a busy street corner.  We literally stopped traffic.  A variety of bystanders rushed over to see if they could do anything to help.  The seizure wasn't very long-- only a couple of minutes-- but that was enough time for someone to call 911.  The police car pulled over next to us as we were walking back to the car-- I'd gotten flustered by all the attention and set off initially in the wrong direction so I was having to backtrack-- and the officer made sure Connor was okay before moving on. 

That was more than enough excitement for one day!

Then today Connor had two more short seizures: one at school and one in the bookstore I'd popped in to grab some reading material for Connor's afternoon cardiology appointment.  Neither lasted more than 45 seconds and he didn't even have to go home after the one during school, but three seizures in two days isn't so hot.  He goes up on the Lamictal tomorrow though, so I'm hoping that will curtail the issue.

I'm happy to say that the little guy's cardiology appointment went swimmingly!  His heart is functioning well and he's been released to yearly appointments instead of every six months, which is pretty fantastic.  He was extremely good for the appointment and when prompted held very still for the ECHO and the EKG both, which I thought was very mature of him.  He got a pinwheel as a reward, which I have attached to his wheelchair.  He spent a lot of time staring intensely at it as if he could make it move just by willing it to do so. 

So all in all, it was a busy couple of days!

In Which We Take Advantage Of The Weather

Yesterday was yet another one of those glorious fall days, and Jeremy and I just couldn't stay inside.  So we drove down to Bradley Park, where Jeremy and Connor played on the accessible playground and I zoomed along the paved bike trail on my skates.  It's been a while since Connor has been on an outdoor swing, and he was absolutely delirious with joy over it.  Jer had to slow the swing down every once in a while because the little guy was laughing so hard he'd make himself go into a coughing fit!  It was great to see him having such a wonderful time; that's the first family outing we've been able to take for a while.

It makes me really happy to visit our local park because there are so many different people there enjoying the space.  There were groups of dreadlocked skateboarding teenagers dressed in black, a troop of boy scouts playing baseball, children like Connor mingling with neurotypical kids on the playground.  Elderly couples were out holding hands and walking their dogs.  Toddlers wobbled down the bike trail on their tricycles.  A group of LARPers (Live Action Roleplayers) had set up an impromptu archery range and were dressed up in medieval outfits, slinging cloth-tipped arrows covered in chalk at a target manned by an enthusiastic eight year old.  Nearby a couple of teenage boys dressed in preppy clothes picked out pop songs on their guitars.  Nobody seemed particularly out of place.

This is what a park is supposed to be like, I think.  I love this town.

The happy mood from yesterday carried over to today, which also dawned sunny and gorgeous.  This morning I listened to Jeremy puttering around in the kitchen singing to Connor while he made his coffee-- something he often does when he's in a good mood. 

We're a really musical household; pretty much anything that can be sung will be sung when we're in the comfort of our own home, and most of what we are singing is relatively ridiculous.  My songs are usually about what we are doing at that particular moment (a song about chopping potatoes to the tune of "Home On The Range").  Jeremy's songs usually involve a whole lot of killing people.  Also explosions.  I believe this morning's selection involved something about me becoming a zombie and hunting for brains to the tune of AC/DC's "Thunderstruck." 

No doubt this is imparting some sort of important life lesson to Connor, such as what to do in the event of a Zombie Apocalypse.  And also that there's not a whole lot of words that rhyme with "zombie," but "mommy" comes pretty close.

It's great to see my family so happy!

I know that we're coming on to winter here, and pretty soon the days will be rainy and dark again.  Maybe that's what makes these days so precious; we know that they're few in number and so we're determined to make the most of them.  And it's nice to set aside thinking about how dreary things will be in a few weeks and just enjoy the time we have now; we'll save up these sunny moments so that we have something to look forward to at the end of the long dark winter.

That's not a bad philosophy for life, I think.

~Jess

In Which Our Internet Has Died

I know I didn't blog yesterday, but nothing bad happened!  Really!

Except that our Internet died, which is actually kind of tragic.

I'm writing this from Adamo's, one of local coffee shops with free Wi-Fi who I will be single-handedly supporting until Monday, which is when our Internet provider can get somebody out to figure out what the heck is going on with our connection.  I didn't get back from skating last night until after 10:00pm, which is when I found out that our Internet was caput.  I love all of you very dearly, but I needed to shower before going anywhere, and going out to a coffee shop at 11:00 at night to tell all of you that Connor had a good day of school is slightly above my level of commitment.  Sorry.

So I'll do my best to give you two blogs today to make up for it. 

Connor did have a really good first day back at school yesterday; he was pretty tired when he got home but was pretty good natured; he even got a little bit of occupational therapy at school with no ill effects!  Today he seems to be pretty much back to 100%, other than that persistent cough.  I'm glad to know that he can bounce back so quickly; it must mean that the rest of his body is pretty healthy.

We're coming up on the last two weeks of Connor's seizure titration schedule, which is pretty exciting!  He'll get his medication levels checked at the end of those two weeks and then they can adjust the medication as necessary to make sure that he's at a proper therapeutic dose.  I'm really hopeful that the Lamictal is going to do the trick; it's certainly having some sort of effect considering that the seizures we've seen in recent weeks have been really weird and different.  Even if we can't get rid of the seizures entirely, I would be really happy if we could at least modify them to where he doesn't stop breathing in the middle of them.  Though I think that habit I have of glancing at Connor in the little mirror we have set up in our van for the purpose every ten seconds whenever I'm driving is probably so ingrained that it's never going to go away.  I do it whenever Connor isn't in the car, too.  Oh well.

It's been a gorgeous couple of days here; fall is my favorite time of year in the Seattle area and weather like this is why.  It's currently in the mid-fifties and the sun is beaming down.  I threw open all the windows in our house yesterday and spent a lot of time dancing around in the middle of our living room with a broom singing Ingrid Michaelson songs at the top of my lungs.  The neighbors have already figured out that we're the eccentric couple of the neighborhood, so they probably weren't too surprised if they glanced in our windows while walking their dogs and saw me pirouetting around in the there. 

Connor had a great time too; I taught him how to "waltz" (we counted one-two-three while I swung him around in the air in circles) and then I did a bunch of laundry-- always a favorite pastime of his because I wave the sheets in his face.  He uses the sign "peekaboo" for laundry and asks for it by staring in the direction of the laundry room.  It's adorable.  I washed a bunch of fleece sheets and so whenever I pulled them off his head it looked like he'd stuck his finger in a light socket. 

So all in all it was a wonderful day yesterday, and I was so looking forward to telling you all about it.  Oh well; maybe an at-home Internet hiatus will be good for me.  I'll probably get a lot more done because I won't be sitting around looking at YouTube all day instead of doing the dishes.  And now I've got the excuse to go hang out even more in our local coffee shops. 

Sounds like a quality problem to me!

In Which Connor Is Ready To Go Back To School!

I think Connor is finally ready to back to school!

He did well on our outing today-- I had him out for a few hours and while he needed a pretty good nap when we got home, he was able to be out and about without getting completely overwhelmed.  I even got some smiles and giggles out of him!

He's still got a nasty hacking cough, but we're not hearing it as often and he has a lot more energy.  It's pretty typical for him to have a cough that lingers for weeks after he has a cold of any kind-- long after he's shaken all the other effects of being ill and is no longer contagious.  So I'm thinking that he's ready!

Plus I'm really looking forward to getting my two and a half hours of alone time back again.

I took him out to a sushi bar around four in the afternoon because I wanted to eat an early (and light!) dinner since I had roller derby bootcamp tonight.  He thinks chopsticks are the most hilarious things the world has ever known, so it's always fun to take him out to places where I can use them.  Connor really enjoys the conveyor belt sushi places because he can watch all of the food go by.  He was very concerned this time, though, because we were there without Jeremy.  "Daddy eat?" he kept saying, looking at the door.  He got mad at me when I told him that his daddy was still at work.  Apparently I'm not allowed to eat dinner by myself!

Roller derby bootcamp was a blast this evening; this week we learned blocking and checking, which was a lot of fun!  I'm pretty sure I've added to my collection of bruises, though.  I'm going to practice hard, because tryouts are only a couple of weeks away!

~Jess

In Which Nothing Much Happens

I took Connor out today for his first errand since he came out of the hospital-- to go get some more Diastat at the pharmacy.  Exciting, I know!  Pharmacy runs are thrilling.

He seemed to enjoy being out, though he started asking to leave the store after about five minutes.  It wasn't very crowded, but he just seemed a little overwhelmed and when we came home he took a nice long nap.  Tomorrow I'll take him out for a longer period of time and in a more crowded area, and I would imagine that by the time Saturday or Sunday rolls around he'll be back to his old self and ready for school!

Oh, and the entire inside of Connor's ear canal came off today and I ended up with a perfect little dry-skin mold of the inside of his ear.  It's all new skin underneath, thankfully, but it was kind of disturbing at the time.  Hopefully this means that the inside is healing up pretty well and he'll be able to wear his hearing aid again soon!

I spent about four hours skating this evening, which I am probably going to seriously regret tomorrow-- especially since I have bootcamp tomorrow night.  But it was a whole lot of fun at the time!  I've gotten the chance to hang out and practice with a whole lot of really cool girls, which is the best part. 

And then those girls beat the ever-living crud out of me. 

I'm going to have to wear long sleeves by the end of the week, because I'm pretty sure I'm going to have bruises all up and down my arms and I don't want people giving Jeremy a whole bunch of dirty looks when we're out at the grocery store.

~Jess

In Which Connor And I Go For A Walk

Today I spent a while trying to get the house back into shape.  During Connor's hospital stay everything went steadily downhill, so I figured it was way past time I tackled that mountain of laundry and tried to get the house back into working order.  I always feel better with a clean house anyway-- it makes me feel much less guilty when I sit down to have some relax time if I'm not sitting there staring at a big mess!

Connor seemed to be feeling better today, so I took him out for a short walk around the neighborhood.  He seemed to thoroughly enjoy himself; it was an absolutely beautiful day and quite warm for mid-October.  It tired him out, though, so after we got back I put him down for a much-needed nap. 

The little guy is finally showing some interest in his surroundings again; he's also started signing as well and beginning to demand attention, which tells me he's really on the mend!  He's still got a terrible wracking cough though, which makes him throw up a lot-- especially at night.  Poor little guy; it can't feel fantastic on his throat.  He spent most of today in an upright position, though, which is pretty great!  I feel like he's bouncing back fairly quickly.

We also got the call today that Connor's wheelchair is in!  We made an appointment to get fitted for it and pick it up next week, which is pretty exciting.  I'm so happy that he'll soon have a new chair, because his old chair is rapidly being outgrown. 

I can't wait to try it out some other glorious autumn day!

~Jess

In Which Connor Continues To Improve, And I Obsess About Roller Derby Some More

This morning I woke up and spent a few minutes before Connor woke up slogging through the vast morass that my e-mail has become; for those of you still patiently waiting for replies, I swear I'll get there.  Someday. 

Sorry-- I'm working on it!

After that I gave Connor a bath to try and soften up some of the hard, crusty, peeling dried skin all over his poor ear.  The skin keeps pulling away and cracking every time he touches or rubs the ear, making the area underneath bleed which is not a particularly good thing.  I was happy to see that his chest looks better today, though.

Connor seemed to feel much better today as well; he was able to sit up and wasn't nearly as congested, though he did still cough quite a bit.  He had a lot more energy, and only took two naps instead of sleeping the day away.  It's good to see him feeling better; he had me really worried there for a while but I'm sure he's over the worst of it now.  Hopefully he'll be back to his old self in a few more days.

In the afternoon Joanna came over and Jeremy and I took off for our respective workouts; we weren't able to find a skating rink open at the time we needed (since it's Columbus day) so he went to the gym while I did my skating outdoors at the park.  Jeremy really wants to try out some roller blades though, so I'm sure we'll hit the rink another time.  I spent about two hours skating up and down the hills of the bike trail, and then did some drills, falls, and stops.  Then Jer and I met back up at the gym and spent some time in the hot tub together before heading back home. 

Jer's being very indulgent of my newly developed roller derby addiction, which is extremely nice of him.

I think a major part of the appeal of roller derby for me is that when I'm on skates I am, for once, not automatically identified as a mom.  I mean, being a mom is what I do all day, every day.  That's how people view me, and that's the most likely subject that they'll bring up to start a discussion in the grocery store.  The vast majority of my daily activities revolve around Connor, and that's perfectly fine.  But I can't tell you how refreshing it is to have someone come up to me and ask me about something other than parenting a child with special needs. 

And believe me; roller derby gear makes people come up and ask you questions.  People under the age of twenty-five have absolutely no idea what you are doing and come up to ask you what the heck roller derby is, and people over the age of thirty-five remember roller derby in its televised, staged, brawling heyday and get psyched about it happening here (only now it has rules, people-- no elbowing in the face or clotheslining allowed).  Children under the age of five have no idea what roller skates are because they've only ever seen rollerblades, so they get really excited about them.  It's very cute.  But regardless of the age of the person I'm having a conversation with, when I'm rolling around on my trusty skates (and yes I did deck them out with skull-and-crossbones laces and-- to protect the toes-- duct tape with flames all over it) somehow my role as a mom doesn't seem to come up in discussion unless I choose to bring it up.  To tell you the truth, that's really refreshing.

While there may be a few moms out there who are totally, completely satisfied with being defined by motherhood and never need any life outside their children, I think the majority of us need some activity like roller derby to keep us sane.  Okay, so most moms probably don't go for extreme, full-contact sports as their saving grace.  Most moms probably take up knitting or Bunco or something.  Let me tell you, though-- derby is a highly effective way to get rid of some of that stress built up from all those doctor's appointments and dealings with the insurance company.  We're probably going to learn blocking and body checks this week at bootcamp, and I am majorly psyched about it. 

I'm wondering if I can get the other girls to yell things like "Your referral is denied because your child's enteral nutrition is not essential for survival!" right before I hit them.  I bet it would be extremely cathartic.

~Jess

In Which Connor Has A Long Road To Recovery

This is what Connor looked like for a good portion of today.

It's hard to see how much this illness has knocked Connor back.  He's still a little too weak to sit in a fully upright position-- it makes him get all pale and wobbly-- so he spent most of his awake time snuggled up to Jeremy or me.  The rest of the time he was snoozing on our bed where we could keep a close eye on him.

He's still got a nasty cough that obviously doesn't feel so great.  The little guy also has scabs on his chest where the electrodes from his original ER visit irritated his skin.  In the hospital they used Colace drops to clean out his left ear (when they were checking for a ear infection he had too much wax in there for them to visualize), and now all of the skin is peeling off the outside of that ear and it's totally raw.  We may end up having to take him in for that tomorrow; I don't even want to think about what the inside of his ear canal and his eardrum looks like if that's what it did to the outside.  Needless to say he's not wearing his hearing aids right now, and I am just very, very grateful that they didn't use the Colace on him in its other, more common use-- as a stool softener.  That would have been horrible. 

But I think despite all that he's really happy to be home; we've seen a couple little smiles out of him today, which is certainly more than we've seen in the past week.  Jeremy's off again tomorrow because of the holiday, which I'm sure Connor will be happy about.  We have respite care for part of the afternoon, so Jer and I will get the chance to do a little recouping too.  I think we're going to go out and try some skating if we can find a rink that's open on Monday afternoons; Jer's been wondering if he can keep his balance on a pair of rollerblades.

We'll see how things go!

~Jess

In Which We Are Home!

We're home!

Connor had a much better night last night; he held his own and didn't need supplemental oxygen while he was sleeping.  While certainly far from well, he was much perkier and more like himself the next morning too, and the doctors decided that we could go home in early afternoon to complete his recovery there.  So off we went!

Connor is still pretty weak and sick, and so he's likely to spend at least another week out of school recovering, but we're happy that he seems to be over the worst of it and on the mend! 

Let's hope that his recovery is quick and smooth-- we've had more than enough excitement to last us for a while.

~Jess

In Which We Are Still At The Hospital

Connor had a bit of a rough night last night; his oxygen levels kept dipping and he was pretty congested.  He'd wake himself up with the congestion and be really, really sad, which would cause his heart rate to shoot up.  That would set off all his alarms, which would make the nurse run in, which would make him even sadder-- you get the picture.  Apparently Jeremy didn't get a whole heck of a lot of sleep last night. 

He seemed to perk up a bit today, though-- he actually spent about six or seven hours awake at one time, which is certainly more than he's spent in the last two days.  And he was able to get through listening to a whole book read to him without falling asleep, which is certainly more energetic than he's been.  That's a good sign.  The neurologists have begun weaning him down off the Ativan; he's at one dose every twelve hours now.

However, he started spiking a fever again this afternoon, and that combined with the continuing issues of oxygen saturation mean that we're spending another night in the hospital.  We'll see how things go tomorrow; if he can really hold his own, stop desatting and stop spiking a fever maybe we'll be able to make it home. 

We'll just have to see!

In Which They Figure Out What The Heck Is Going On With Connor

So we have some answers!

Over the past few days they've done many, many tests on Connor to see if they can figure out what's going on.  One of the things they did was take a nasal swab to run a bunch of rapid viral tests.

Sure enough, they found something. Connor came up positive for parainfluenza.

Parainfluenza is not the flu and there's no immunization or effective antibiotic for it; it's the family of viruses that cause the common cold with fever, a good portion of cases of croup, and a number of cases of bronchiolitus or pneumonia too.  So far Connor's is sticking to the upper part of his respiratory system, which is a good thing.  He's developed a pretty good cough, though, and spent most of the day today sleeping.  There's really not a whole lot the hospital can do other than to keep him hydrated, comfortable and seizure free.

The little guy is still desatting while asleep (he hovers in the high 80's without oxygen) so until that resolves and they think they can take him off of the Ativan every eight hours I'm pretty sure we'll be sticking around the hospital.  Jeremy's spending the night there tonight and I've come back to the house; we'll switch off tomorrow night.  Hopefully Connor will be able to get over the worst of his illness soon and we'll be able to bring him home!

Jeremy actually gave me the latest update on Connor by phone while I was on my way back home from roller derby bootcamp.  Yes, I went to roller derby bootcamp while my son was in the hospital.  I seriously needed to get a good workout in, because after two days of sitting in my living room watching my kid breathe, and then another full two days of sitting in a hospital room watching my kid attempt to breathe, I was just a wee bit tense. 

It took me a little while to relax once I was up on skates (and believe me, if you are really tense on roller skates you fall down a lot) but once I got into it and was able to take my mind off the little guy for a while I felt much better and actually managed to stay on my feet.  I think that after four years of doing these sorts of crazy adrenaline rushes I've learned what my limits are and when I need to take a break from being Mom, and tonight I was pretty close to that limit.  I'll get a good night's sleep tonight, and then tomorrow I'll be able to go back to the hospital refreshed to relieve Jeremy so he can get his much-needed break.

So anyway, thanks to everybody for your continued prayers and thoughts of support; keep your fingers crossed for us that Connor will be able to hold his own soon!

~Jess

In Which Connor Is In The Hospital

So judging by the many, many e-mails I got (thanks, everybody), most of you probably noticed that I didn't update yesterday.  I'd like to say it was because we won the lottery and didn't write because we were jetting off to Bermuda or something, but that's of course not the case (especially since I don't play the lottery).  No, just like the last time I didn't update, it was because I was sitting in a hospital room.

Connor's not feeling so hot right now.

Yesterday morning he was supposed to have a cardiology appointment at nine.  He was sleeping in, which is pretty typical when he has a bit of a bug, and so I woke him up at about 7:45. 

By 8:45 he'd had three seizures.

None of them were more than a minute long, and I only had to give him one breath for each to kick start him again, but three seizures in an hour was way past my comfort level.  After the second one, I called his neurologist.  After the third one, I took him to the Emergency Room at the private hospital less than a mile from our house. 

By 11:00 he'd had three more seizures.  Two of them were absence seizures, which we'd never seen from him before, and the last one was also something new and different-- it involved his eyes rolled completely back in his head, which was not a particularly wonderful thing to watch.  So at that point they dosed him with some Valium via IV and decided to transfer him to Children's Hospital in Seattle, which is where we spent last night and still are today.

They have him on a maintenance dose of Ativan every eight hours right now to stop him from having seizures while his body is recovering.  At first they thought he might have aspiration pneumonia, but a chest x-ray ruled that out.  After running a gamut of tests on him, right now they think it's most likely that he's simply picked up a viral upper respiratory infection.  On the one hand this is a good thing, because that's much better than something like a liver or pancreas problem, which was another thing they checked.  On the other hand it's not so hot, because it means that every time Connor gets a common cold from now on we may be doing this.  I am really not thrilled with that idea.

Right now the little guy is relatively miserable but stable.  Mostly he's spending time either sleeping or watching as much TV as he wants (a rare privilege for him reserved for hospital stays).  He's having a bit of trouble keeping his oxygen saturation levels up while he's asleep though, so until he can do that and they're sure that he won't start seizing again when they take him off the Ativan, we'll be at the hospital.  Current estimates are that we'll be spending at least another two to three days there.  The good news for you is that the hospital has Wi-Fi, so I can blog from there and keep you updated. 

Keep us in your thoughts and prayers, please!

~Jess

In Which Connor Is Still Sick And Has A Whole Bunch Of Seizures

I spent the vast majority of today sitting on the couch watching Connor breathe.

The little guy had four seizures today-- probably all febrile seizures as his temperature kept spiking despite being on Tylenol.  I knew he was really feeling terrible when he didn't rip his oxygen tube off the second the seizure was over.  He really hates the nasal cannula.  Needless to say, the day was just a wee bit nerve wracking.

He has pretty much identical symptoms to the last time he was sick, which makes me wonder if this is a recurrence of the same thing and he actually has an infection somewhere-- maybe his ear or a UTI.  More than likely it's just a virus, but I'll be making him an appointment with his pediatrician to get him checked out just in case. 

He slept about eight hours today, mostly on curled up on the aforementioned couch where I could keep a closer eye on him than the apnea monitor offered.  This meant that I didn't leave my house until Jeremy got back from work, and bathroom trips were complicated affairs.  My first Signed Exact English (SEE) class of the semester was tonight, and so I practically threw my poor kid at Jer when he walked inside and zoomed out the door.  I love Connor to death but it's miserable seeing him sick and after a long day of literally sitting there watching him breathe (or not breathe, as the case may be) is not only nerve wracking but also excruciatingly boring. 

I hope he feels better soon!

~Jess

In Which Connor Is Sick Again

This morning I planned to drop Connor off at school and do some housecleaning.  When we got to school, though, Connor had about a fifteen second seizure.  He didn't stop breathing or anything though, and he seemed fine afterwards, so I left him at school and decided that I needed some breakfast and a breather before I started my housecleaning.  So I dropped by Adamo's (one of our fabulous little coffee shops in the area) and was sitting there reading a book when I got a phone call from the school.  Little guy was decidedly not happy-- he was crying and throwing up-- and was ready to come home.

Well, that was the end of any cleaning I might have done.  When I got home I discovered that Connor was running a low-grade fever-- the onset of which was probably the cause of the seizure earlier in the day.  He spent the next eight hours doing one of three activities on my chest: sleeping, crying or throwing up.  Poor little guy.  I dosed him with Tylenol and ended up finally managing to get him to bed down on the couch; he'd become absolutely frantic when I tried to put him to bed in his room and I'm a big softy when my kid is sick.  Of course that meant I was then confined to the living room for the rest of the evening because he wasn't hooked up to his apnea monitor and I had to keep him within eye-shot, but it was still a major improvement over having him bundled up on my lap; at least I had feeling back in my legs.

Connor generally has a pretty good immune system, but once he gets sick he's much more prone to have illnesses come in cycles.  This is certainly the time of year for it.  But I hope he manages to feel better soon, because right now he's pretty miserable. 

Poor little guy.

~Jess

In Which Jer And I Have A Date

Today Jeremy and went out on a date!

First off we stopped by the bookstore because Jeremy is currently reading the Hyperion Cantos series by Dan Simmons, and he needed the next book.  I technically didn't need a new book, but I got one anyway.  Or two.  You might have figured out by this point that I have a slight addiction to books.

At any rate, the first bookstore we went to didn't have the book he wanted, so we drove over to another bookstore, where he found it right away.  He checked out and actually called me on my cellphone from outside the bookstore because I hadn't realized he'd left the store; I was so busy wandering around in the usual state of bliss I enter when surrounded by my own personal literary brand of crack.  Cheeky man!

I had to leave the store bookless.  It was terrible.

Then we walked over to a local hole-in-the-wall Pho shop, where we each ate a huge bowl of tasty Vietnamese soup.  I swear a small bowl of that stuff is about two meals worth for me, but somehow there's never any left over to save! 

After eating we needed to walk off our gigantic meal, so we drove over to the mall and wandered around for a while.  I picked up another t-shirt and a pair of knee-high socks for roller derby practice, because I can never have too many socks.  These are teal and have little whales on them: too cute!  I'll use them for Connor's therapy when I'm not skating in them, since we go without shoes in the activity rooms.

Once we'd walked off our lunch we went to (where else?) one of our many local coffee shops, where we sat for an hour or so sipping delicious beverages and reading.  Finally it was time for us to come back home because Jeremy needed to spend some time in front of the computer.  I dropped him off and then drove over to a different coffee shop to spend some time cozied up to a fire while writing mediocre poetry.

I was excited to see, by the way, that the Femme Fatal special issue of Thunderclap! Magazine is out; I have three poems published inside (pages 19-22).  You can download a free version or buy a paperback version of the magazine here.  I'm always excited to see any of my poetry in print, and it makes me want to submit more often.  I rarely do, however, becase I can never figure out when anything is finished.  It drives me nuts.

Oh well.  I'll keep plugging away at it!

~Jess

In Which I Talk About Skating Some More

So this is going to be sort of a short post, because it's nearly one in the morning and I just got home.  I went to the Adult Skate at our local skating rink, which runs from ten until midnight.  It was practically deserted so I got to fling myself around the track without embarrassment, but I should have blogged before I left for skating time.  Oh well.

I would have skated earlier in the day, except for three problems.  The first was that it was nasty outside, which does not make for fun outdoor skating.  The second was that until ten in the evening there are a whole bunch of little kids out on our local rink, and I'm not quite up to jumping over sprawled munchkins yet.  The third was that I'd tried some baseball slides on the asphalt the day before.  I do not recommend this, by the way.  Not only do they tear up your skates really fast, but they also tear up good portions of your skin whether or not you happen to be wearing snowboarding pants.  I'll be sticking with the knee slides outdoors from now on.  But the end result of this fun experiment (beyond the delightful patches of missing skin on my thighs) was that I tore right through my laces on both skates.  So I had to get some more laces and also some toe guards (because the duct tape just wasn't cutting it) before I could skate again. 

I picked up two pairs of laces at the rink-side skate shop.  The first pair is hot pink, and the second pair is black with little skulls all over it.  Because that's what people think of when they see me.  You know, death and destruction.  Because I'm so intimidating and all that.  You've never seen such an intimidating toothpick in your life.

I found out while I was there that the rink (which is much closer to us than the one on post) also allows stroller/wheelchair skating during their family skate time!  I'm excited about this because it's yet another chance for me to involve Connor in a family activity.  Jeremy thinks he might be able to get up on a pair of rollerblades since they have the high ankle supports, so we could all hit the skating rink together!  I seriously love how inclusive and welcoming this area is; roller skating isn't something I would have thought would be a group activity of ours if you'd asked me shortly after Connor was born.  One of the women who worked at the rink was telling me that they have some children with cerebral palsy come in and skate; their braces fit right down into the skates and it's great for muscle strength.  What a fun activity for therapy!

It makes me really happy to think about it!

~Jess

In Which A Whole Bunch Of Things Happen

I found a cute picture of us at an army function a few months ago that I hadn't posted yet.  So I thought I'd put it up since I haven't bothered to get new batteries for the camera yet.  Sorry about that.

At about 7:00 this morning I got a knock on the door.  It was the delivery man with our last shipment of wood so that we can finish up the deck!  Jeremy is going to spend a good portion of tomorrow staining it so it'll be ready for assembly.  We're really happy that the project is almost finished; it should look beautiful when it's done. 

I also got a phone call from Olympic Pharmacy; Connor's new wheelchair should be ready in the next couple of days!  I'm so excited that he's getting his new chair, because he is seriously outgrowing his old one.  You can barely snap the lap belt closed anymore because he's so big.  His new chair is a Thevo Twist, (with red upholstery) and it is a seriously stylin' set of wheels!  It looks like it will be pretty comfortable for him, and with a carrying capacity of 88 pounds he's not likely to outgrow it any time soon.  Someday we hope he'll be able to use a wheelchair that he can move himself, but in the meantime this one will hopefully be pretty great!

As for Jeremy, well, he went on a battalion run this morning.  That's right.  A run.  How's that for awesome?  It's not something he'll probably do very often as it'll lower the life-expectancy of his ankle joints (currently predicted to be between 20 and 25 years) but the fact that he can do it at all is beyond amazing.  Not that I'm surprised.  Oh, and did I mention that he has an eight-pack now?  He's been working out twice a day for at least the past six months.  The man is looking more like Vin Diesel by the week. 

I don't really have a problem with that.

Oh, and last but not least, I believe Jer and I finally came to a decision tonight about which child we're going to be adopting.  I'm not sharing any details on here until we're officially matched by our agency, but I thought I'd let you all know that the news is coming.

And that was quite enough to cram into one day!

~Jess