In Which Connor Has A Best Friend

So I've talked a lot about Connor's respite care worker Joanna on here, and I think I've mentioned once or twice that she has a little girl, C, who she brings with her when she watches the big boy.  We not only don't mind her bringing C, but we actively encourage it, as we feel like the more socialization Connor has with other kids, the better.  Plus Joanna's pretty much one of the family-- she's been watching Connor at least thirty hours a month for a couple of years now.  So that makes C family too!

C is about six months old now, and as far as she's concerned Connor is her very, very best friend in the whole entire world.  Not only does he have great toys and all sorts of fun extremities that she can stuff in her mouth, but he also apparently has very pettable hair. 

Connor has a love-hate relationship with C.  On the one hand, he can sit back and let her do all the pushing of buttons and switches and keys that make his toys go while he can lean back and do all the directing.  C hasn't quite figured out the concept of turns yet, and as far as Connor's concerned that's perfectly fine.  Both kids get ticked at Joanna when she picks C up to give Connor a turn at the keyboard or drums or whatever it is they're playing with when he would much rather let C have a turn indefinitely.

This picture pretty much sums up their relationship.

But C sometimes gets on Connor's nerves too-- she loves him to death and wants to touch him all the time-- and sometimes the petting and grabbing and laying across and chewing on and whatnot gets to be a little much for him.  Joanna supervises them closely, of course, but as C gets older and more mobile she only gets more enthusiastic about showing him how much she adores him.  And she's going to be crawling soon.  Guess I'd better start actually childproofing the house!

Connor pretends he doesn't care for her, and acts totally indifferent when she invades his personal space and slobbers all over him, but every once in a while we'll catch him holding her hand or patting her gently on the back.  So I'm pretty sure it's mostly a front and he likes her just as much as any kid likes having an annoying little sister around-- he may complain about her a lot, but he still gets excited whenever he sees her, and he's pretty tolerant of her.  Certainly he likes C a lot more now that she's more interactive and doesn't spend all of her time either sleeping, eating or crying.

I think it's pretty great that he's got such a big fan to grow up with! 

~Jess

In Which Connor Stays Up Forever

Connor stayed up until almost five in the morning last night and is showing every indication of pulling another all-nighter tonight, so this post will be short as I'm not terribly coherent right now.  I did get the chance to sleep in a bit yesterday, so that was good, but really the kid needs to cut this out.  He starts up morning school on Thursday and he's going to be a bit crabby if I don't manage to get his sleep cycle back on track. 

. . . and I've been staring at the screen for fifteen minutes trying to figure out how to spell the word "thoroughly."  I finally looked it up, and then realized I'd forgotten the sentence that I was going to use it in.  This is what sleep deprivation does to you, people.  Luckily we have respite care practically all day tomorrow, so instead of cleaning or running errands or what I should actually be doing with that time, I can use it to take a really, really long nap.
 
How the heck did I do this when I was eighteen?  I am so not cut out for this staying-up-all-night thing anymore. 
 
~Jess

In Which Not A Whole Lot Happens

Really, I have very little to write about today.  I ate a whole bunch of various things topped with lemon curd whipped cream, Joanna came over to watch Connor and I spent some time at the library, Jeremy and I went out to eat, and then I drove over to the last night of my roller derby team's boot camp, which was a ton of fun. 

It's great to see how much all of the ladies have improved, and I can't wait for tryouts to happen so I can officially welcome a new group of gals to the league!  It seems crazy that not so long ago I was doing this very same thing.  I remember being incredibly nervous and I debated for a little bit over whether or not I should actually show up for tryouts, but since I'd told the entire Internet I was going to go it was a little late to back out without some serious explanations. 

Obviously I'm glad I went!

So at any rate, I'll be wishing all the potential New Bruisers good luck in a couple of weeks.  I think we'll have a great crop of new skaters this year.

Connor is still up and yelling happily at the top of his lungs, so it looks like this may well be another all nighter.  Whee!  At least I have chocolate ice cream and a book to keep me company.  Chocolate ice cream makes all things better.

~Jess

In Which I Eat Yummy Things And Connor Heads Back To School

I have a ton of lemon curd whipped cream in my refrigerator and I was running dangerously low on blueberries to eat it with.  Since I haven't quite resorted to eating directly out of the bowl with a spoon yet (or at least I won't admit to it) I went out and bought a bunch of things to go with it.  Luckily our grocery store was having a sale on sorbet, so I bought a ton of different flavors.  I am now discovering infinite numbers of tasty ways to eat an entire pint worth of whipping cream all my myself.

It's hard, but someone must do it.  For Science!

Anyway, so Connor didn't have any seizures today, which was great!  I'm hoping that he's back down to his one-a-week schedule, which I would be perfectly find with as that would give him a chance to recover between episodes.  Mostly he hung out with Jeremy today, while I did such productive things as read comics on the Internet and take a nap.  Well, okay, I really needed the nap.  I have to do as much catching up on sleep as possible during the weekends, since I'm not getting a whole lot of it during the week right now. 

I'm really happy with my new roller derby pads, though they're tight enough that I actually got stuck in one of my knee pads for a little while after today's scrimmage.  It's way better for pads to be too tight than too loose (the last thing you want is for your pad to slide off the part it's supposed to be protecting when you get hit), and they'll stretch after I wear them a few times.  In the meantime I'll be playing a good game of tug-of-war with them, though. 

I got a letter in the mail about Connor's school orientation, which is on Wednesday.  He starts up school the next day; can you believe summer is over already?  I've started talking to him again about school and reminding him how much fun he had last year, and I think he's starting to get pretty excited about the prospect of starting up again.  I'm a little sad that the summer is over, but I'm also really excited about having my blissful two hours to myself a day back.  I guess most moms feel like that, huh?

The only other thing of note that happened today was that Connor finally cut his second permanent tooth!  It's been hanging out just under the gum for weeks now and one corner of it made an appearance this evening.  The rest of his primary teeth don't seem inclined to go anywhere for now.  Yay for teeth!

I think I'll celebrate with him tomorrow by sharing a little bit of lemon curd whipped cream with him.  But only a little bit.  I wouldn't want to throw off my sorbet experiment results.

~Jess

In Which Connor Revs His Seizure Engine Again And I Sleep Forever

I'm sitting here eating a big bowl of blueberries with lemon curd whipped cream on top.  I made a blueberry pie for a birthday party earlier today and the lemon curd whipped cream (basically I whipped a mixture of cream, powdered sugar and lemon curd-- hence the creative name) was supposed to go with it, but I forgot and left it in the refrigerator.  So now I have to think of things to do with it.  Putting some on top of a bowl of blueberries seemed to be a pretty good start.  I had a big slice of the blueberry pie (one of my favorite pies ever to make in the summer because it's practically no-cook and also delicious) earlier at the party, but I'm pretty sure there's no way you can ever get enough blueberries so that's okay. 

After just over a week seizure free Connor jumped back into epilepsy land with a bang-- he had a seizure that was long and violent enough we ended up using the Diastat on him.  His right side was paralyzed afterwards instead of his left, which was interesting.  Guess the kid likes some variety.

So that wasn't particularly fun.  Otherwise the day was pretty good-- Jeremy let me sleep in until my getting up time didn't even qualify as morning any more, because I sat up listening to Connor giggle to himself over the monitor until 6:30am and so I badly needed the sleep.  Once I finally dragged myself out of bed, Jer and I drove up to Fast Girl Skates in Seattle where I picked up some new roller derby pads. 

I'm on my fifth pair of knee pads now because I keep cracking them, so I switched to a different brand and we'll see how well these work for me.  My wrist guards were really starting to fall apart and my elbow pads were losing their elastic, so I replaced those too.  I also bought a new helmet, as my old one was starting to get pretty scratched up and, even if it wasn't, it was a year old and therefore needed replacing in my paranoid mind.  I've had multiple concussions and so I want to preserve as many remaining brain cells as I can!  Luckily they had a pretty good selection in today; the last time I bought my helmet the junior roller derby season had just started and so they were almost all out of my size. 

Yes, I wear a really, really small helmet, but my tiny pinhead is complimented by my huge clonker feet.  I'm built like a human pyramid. 

So at any rate, other than Connor's seizure it was a decent day.  Most days that involve making pie are!

~Jess

In Which I Look At Connor's Seizure Records And Totally Freak Out

So today I had a meeting with Connor's nurse about the upcoming school year, and I pulled out my handy Excel spreadsheet record that I keep of all Connor's seizures (yes, I keep an exhaustive record of every seizure Connor's ever had) to pull out some statistics showing how he's been doing over the summer.  I hadn't crunched the numbers since March, and so I was a little unprepared for what I came up with.  Here are the statistics for Connor's seizures over the past three years:

2008: 15 (14 before diagnosis)
2009: 11
2010: 91
2011: 246 so far

That's right-- two hundred and forty six seizures in the past eight months.  That works out to about 30 seizures a month, or a little less than one per day.  No wonder I've felt like he hasn't caught a break recently.  So that was kind of shocking and more than a little depressing.  I'll have to sit down and really look at the trends, but the short of it is that his seizures have been getting a whole lot worse. 

At least he hasn't had any for the past week.  We'll hope that his new medication continues to help.

In the meantime think I need a lot more chocolate in my house.  With that kind of news, I need it.

~Jess

In Which Jer And I Have A Date

Connor had his dental appointment today, and it went extremely well!  They were very surprised to see that he's already cut a permanent tooth and has another not far behind; they said it's super early for that.  When I explained that he cut his first primary tooth at around four months old they said that probably explained it. 

So his teeth apparently looked great!  The dental tech said that when she saw Connor was mostly g-tube fed she expected to see a lot of tartar on his teeth because that's usually a major issue for tube fed kids, which I thought was interesting.  So she was really happy to see that wasn't at all the case for Connor-- she really didn't have to do all that much to his teeth because we brush them on a regular basis, so they didn't really have any major plaque or tartar at all.  We don't use floss on him because his teeth are spread too far apart to need flossing, so that helps us out quite a bit.  Connor tolerates having his teeth cleaned really, really well but somehow I don't think that would extend to flossing.

Connor acted like such a big boy through the whole appointment; he didn't get upset at all, and he'd let the dentist look in his mouth for two or three minutes at a time with no fuss.  Then we'd take a ten or twenty second break, and after that he'd let her go right back to looking.  Also he still thinks the cleaning tool is pretty funny, which is nice.  The dentist suggested we get him a vibrating toothbrush will a circular head because his teeth are so small, but otherwise said that we're doing a great job.  We'll see them again in six months!

So Joanna came over and Jer and I went on our first date night in a while.  I think the last one that was just the two of us was when we went to Vashon island, so we were ready for some alone time!  Oh, we didn't do all that much, but that was perfectly fine; I think we just needed to spend some quality time together and enjoy each others' company.

So we started off by grabbing some coffee, and then we headed out to Bradley Park for a nice, leisurely walk together.  Somebody at the college down the road was playing some very, very loud live rock music and kept setting the car alarms off, but otherwise the park was lovely.  Then we drove across the street to buy Connor a new toothbrush.  We haven't tried it out yet, but it's similar enough to the dentist's cleaning tool that I'm sure it will probably produce some great giggles!

After that we bought Jeremy a new cell phone.  He accidentally forgot to take his old one out of his pants before throwing them in the wash; something we discovered when the washing machine started making a really loud banging noise when it hit the spin cycle.  So now his old one is really clean, but it doesn't make phone calls anymore.  Luckily Jer was more than overdue for a new free phone, so he spent a bit of time picking a new one out from the available options while I amused myself by accusing the electronics store employee of being an android.  He claimed that if the phone broke we'd have to talk to the manufacturer of the phone instead of the store, but I told him that obviously this was just a cover story to draw focus away from his giant robot conspiracy, as he and his fellow androids were no doubt making all of the products in the store in the break room during their lunch hours and so we'd be holding him personally responsible if our phone broke. 

In my mind it's not a successful shopping trip if the salesperson isn't slowly backing away and trying not to make any sudden movements by the time we're ready to leave. 

So after that we had just enough time to grab some pizza down at a local restaurant.  We ordered different personal pizzas, but Jer's pizza was better so I stole half of it because I'm nice like that.  He let me do it too, possibly as a distraction technique since I kept trying to get a hold of his new phone.  I like good food and bright shiny objects in that order, so this was probably a pretty good strategy.  At any rate, dinner wrapped up a fantastic and much-needed evening. 

Jer spent the rest of the time before bed fiddling with his new toy, which has a touch screen, in an attempt to figure out all the new functions and get things set up the way he wanted them.  Judging by some of the language I heard emerging from our bedroom, I think his campaign isn't going too well.  The androids will probably be pleased.

~Jess

In Which Connor Makes A Comeback

So I've been growing my hair out for a while now, and it's gotten pretty long-- a few inches past shoulder length, which is the longest I've had it since high school and certainly the longest Jeremy has ever seen it.

I've been having fun playing with different ways of putting it up, and enjoying being able to stick it back in a ponytail, and today I spent a bit of idle time why I hadn't started growing it out years ago.  And then today I was lying on my back playing with Connor by lifting him up, turning him upside down and "flying" him around, which he finds hilarious, and he laughed so hard that he threw up.  On my head.

And now I remember why I used to have my hair cut so short.

So after I washed my hair eighty bajillion times and felt sort of clean again I plugged my camera in with my shiny new USB cable and pulled off the 100+ pictures I've taken since I lost my previous cable.  It's going to take me a while to go through them, but I have to say that so far they are not really an awe-inspiring bunch. 

Highlights that I've posted here for your viewing pleasure of those taken in the last few weeks include "I'm not feeling great and you're forcing me to play the keyboard on top of that," "Look, I'm really, really not feeling so hot right now and Hospital Monkey is the only one who understands me," and this morning's "I just got up three minutes ago and I'm not really awake enough for pictures." 

Lovely, huh?

So in all of these photos he has his hearing aids out and his hair is a mess-- he'd just woken up in all of them.  The difference is that in the first two he was in the middle of a long seizure run, and in the last one he might have just woken up but he's feeling pretty good.  Looking at these the difference in his appearance to me is pretty striking-- the gigantic dark circles under his eyes have started to go away and his color is a whole heck of a lot better, even if he does have his blanket pattern imprinted on half his face.  He also doesn't have that scary zombified expression on his face that we've seen a whole heck of a lot of in the past few weeks-- the one that says "Absolutely all of my energy is focused on surviving these seizures and I don't have any leeway for anything else." 

It's scary to look at these photos and have visual proof of just how depleted his stores were getting in the past two weeks, but it's pretty heartening too to see what an amazing difference just a few seizure-free days can make. 

That's my big boy!

~Jess

In Which Connor Is In The Best Mood Ever And I Misbehave In The Middle Of A Store

I finally bought a replacement USB cable for my camera this evening!  So once again I can bombard you with 80,000 pictures of my ridiculously adorable child.  As soon as he wakes up and I can start taking them, that is.  He probably wouldn't appreciate me starting right now.

The little guy slept through the night and woke up around 8:30 in the morning convinced that today was the absolute best day in the history of the universe.  He smiled, and giggled, and squealed his way through the first half of the day, and then when we drove to the store he proceeded to wave to pretty much every person we met.  Also every time I came around to the front of the wheelchair he would get really, really excited, wiggly back and forth and actually laugh out loud, he was so happy to see me.  If I'd been pushing the chair for a little while he'd start loudly clearing his throat until I popped around the front to look at him, and then he would squeal and giggle like I'd just told the funniest joke he'd ever heard. 

I couldn't help but laugh back, and so I started sneaking around to the front of the wheelchair when he was looking the other direction to surprise him.  This made him laugh even harder, which made me attempt even more ridiculous antics, and the cycle continued.  Connor's behavior was of course immediately excused by everyone in the store due to his extreme cuteness, but the sight of me hunched over, sneaking around behind the clothes racks towards my son and cackling like a demented hen probably raised some eyebrows.  Luckily I have long ago ceased to care what other people think about me and have zero sense of personal dignity, so I went right on ahead and did it anyway. 

I'll do practically anything to see Connor's face light up and hear that squeaky bicycle wheel laugh.  I haven't heard nearly enough of it lately, so we have some catching up to do!

~Jess

In Which Connor Is A Sleepykin

So Connor did this glorious thing last night where he fell asleep around 10:00pm and then woke up at 11:00pm, fell asleep again at midnight, woke up again at 1:00am. . . you get the picture.  He did that until about 3:30am or so, and then he finally went down for good.

He proceeded to sleep for the next fifteen hours.  Yes, my child literally slept the day away.  I went in and tried to wake him up around 11:00am or so, and he threw up his breakfast and then actually fell back asleep sitting upright on the couch.  So I cleaned him up, fixed up his g-tube pump to give him a slow feed and then put him back to bed.  Every four hours or so throughout the day I would go in to roll him over, change his diaper and make sure he was actually asleep and not in a coma or something.  He'd wake up a little bit during the process and then the second I put his sheet back on him he was out like a light again.

So apparently he woke up around six thirty or so and stayed up for an entire hour before crashing again, and he's currently still snoozing away.  Suddenly my child has been replaced by Sleeping Beauty's younger brother.  My guess is that he's catching up on all of the sleep he's missed in the past few weeks.  Apparently he's decided that he can get all of his sleep in two day chunks and then stay up the other five days of the week.  It's a novel approach to sleep, but not one I'm overly enthusiastic about.  Oh well.

So I'm off to take advantage of his current somnolent state to catch up on some sleep myself!

~Jess

In Which We Play In Seattle And Connor Is A Sleep Jack-In-The-Box

So last night Connor decided to stay up until 7:00am-- yes, that's not a typo-- which meant that taking him anywhere today was going to be a really, really bad idea.  So Jeremy stayed home with him all day while my friends and I drove up to Seattle to do some fun shopping at Pike Place Market.  Since it was a summer weekend with good weather the market was absolutely packed, but we still had a fantastic time perusing the stands and stopping at the tea shop (of course) and the chocolate shop (obviously).  We also ate some fantastic chowder at the usual spot Jer and I stop at for it, and we dropped by a little Russian bistro to pick up some piroshkis for breakfast tomorrow. 

After that we walked over to the Seattle Aquarium, where we listened to part of a lecture about the giant Pacific octopus on exhibit and got to see them give her a Gatorade container filled with squid, which she opened (unscrewing the lid!) to eat her treat.  The octopus they have now is named Loki, which I thought was pretty funny.  I don't think she and our cat would get along too well though.

We also got to watch them feed the seals, and we saw many really neat kinds of fish.  I like aquariums because even if they are the same tanks the fish are constantly moving and interacting with each other, so no matter how many times you visit there's something new to see.

So we spent most of the day there, and then after we got home my guests not only presented me with a birthday present and a box of chocolate, but then they also cooked us dinner!  These are the kinds of guests that you want to have come back really, really soon. 

Connor didn't have a single seizure today; he spent most of the day napping off and on.  When I read him his bedtime story he fell asleep in my arms, and then as soon as I took him back to his bedroom he decided he was not at all tired and would never, ever be going to sleep again.  Now he keeps dropping off for an hour or so and then waking back up again.  Fun!

So all in all it was a pretty great day, and I hope we'll have similar amounts of fun tomorrow, though I may need way more coffee to appreciate it if he continues this glorious sleep pattern.

~Jess

In Which We Have A Much Much Much Better Day

Well today went a heck of a lot better than yesterday.

For starters Connor didn't have a single seizure today, which was great!  As weird as it sounds, though, this isn't really indicative of how well this new medication will work for him.  Connor almost always has a couple of great days after we change up his medication, which is apparently pretty common.  Then once his body has a chance to adjust to the new meds he starts having seizures again.  I think there's even a name for the phenomenon, though I don't know what it is off the top of my head.

But we're hoping he gets some good time to recover out of this round of seizure medication, and he'll be ready to go for school, which starts up in just a couple of weeks!  And if this medication does end up not working out for us we'll keep looking for our magic bullet-- there are a whole lot of seizure meds out there we haven't tried yet.

So another great thing that happened is that we had some close family friends arrive in town today!  Tonight they came to my roller derby bout, which was a whole lot of fun.  I felt like I played pretty well, and my team won!  Also I wore hot pants with an octopus attacking a submarine on them.  I'm pretty sure you can't have a bad day when you get to wear underwear as outerwear.  Especially if it's underwear as awesome as that is.

And finally, our CSA really pulled out all the stops with the fruit production this week.  The farm we have a share in specializes in berries, and after a late start the fruit is really coming in!  I bought extra (CSA share holders get a discount!) and so now I have apricots and cherries and blueberries and plums and champagne grapes (only the tastiest type of grape in the known universe) in the house.  And I am eating them all this minute because they are awesome.  And to make things even better, we received our first pint of ripe cherry tomatoes.  Fresh, local tomatoes that are available a good portion of the year are one thing I really miss about living in Texas, and I so I go a little crazy for the two short months we have them here.  Next week I'll probably make an effort to put them in pasta and salads or cook with them or something, but this week I'm planning on eating them all straight out of the carton.  Yum!

So in conclusion, it was a no seizure, old friend greeting, undies as outies, rear kicking, ripe tomato kind of day.  Sounds pretty great to me!

~Jess

In Which We Visit The Hospital Again

Guess where we spent the day?

Yep-- it was back to the hospital for us.  Connor started seizing at a little after nine in the morning, and over the course of the day he had eight seizures while on Ativan.  So after seizure number five I took him back to the emergency room.  I wasn't really comfortable with the whole one-seizure-an-hour thing. 

So we spent most of the day there while Connor's neurologist figured out a game plan for us.  Connor is starting on a new medication called Zonegran, and he's coming completely off his valproic acid.  We'll see what these changes do for him over the next few days. 

And that's about all the energy I have for blogging.  But we're home now, so that's good!  I'd like to stay there for a while.  Please.

~Jess

In Which Connor Has A Gajabillion More Seizures

So we didn't go to the dentist's office today.  Instead we rescheduled and stayed home, because Connor had six seizures and I didn't think getting on the highway with him would be a good idea.

This is seriously not a good trend.

So depending on how tomorrow starts out we may or may not end up back in the hospital, which no doubt will be Fun Times.  Connor is having these while on his Ativan, which is even better.  He spent most of the day drifting in and out of sleep.  For some reason he always seems to pull this sort of thing going into the weekend, when all of his doctors are gone.  Also we have company coming from Texas.  And I have a bout on Saturday. 

My child has an impeccable sense of dramatic timing.

It's getting to the point where I need a seizure meter up on top of the blog so I can just tick off the number he had each day.  I'm afraid that he is definitely heading in the wrong direction.  If we do end up back in the hospital we'll almost certainly be going up to Children's, and I'm hoping we might get the chance to see the epileptologist again.  Otherwise we'll just have to see how things go.

Not a good day.

~Jess

In Which Connor Catches The Seizure Train

Well, I'm sad to say that little guy jumped back on the seizure train today-- he had three over the course of the afternoon.  I was hoping he'd catch a bit more of a break.  Let's just hope that this isn't the start of another seizure cycle for him, and that he'll have some more time to recover before we see anything like last Friday happen again. 

Otherwise the day was largely uneventful; the seizures pretty much knocked the little guy out for the day, so we didn't end up going anywhere.  I had so many big plans for the summer, and it's just flown by!  I'm going to try and cram in a few good field trips with the little guy before it's over and he's back in school.  I just don't like driving very long distances with him in the car when he's in an active seizure cycle.  Also he doesn't really get all that much out of field trips when he's unconscious.  But I'm hoping we can still cram in a trip or two, even if we have to stick really close to home.

The little guy has a dentist appointment tomorrow, which should be interesting.  This will be the first appointment he's had since he started losing teeth, so we'll see what they have to say about his permanent ones coming in.  He's got his first permanent tooth about halfway in now, and there's no sign of the second one yet.  We don't really have any idea what his permanent teeth will look like-- they develop at a different time from the primary teeth, so we don't know how his genetic issue might have affected them.  We do know that he has permanent teeth in there, so that's good.  I'm particularly interested in seeing what his two top front teeth might look like-- those two baby teeth are really different than typical teeth.  There's no real way to tell yet though unless they try to take x-rays of his teeth, which would no doubt be an adventure.  So I guess I'll just have to wait and see what they look like when they come in!

~Jess

In Which Connor Sleeps In And We Acknowledge A Weird Anniversary

So today Connor slept in until almost two in the afternoon, which was kind of crazy.  I think this must have been one of his "catching up on sleep" days.  So we spent pretty much the whole day at the house.  I intended to try and get caught up on all of the housework that I've neglected while Connor hasn't been feeling well, but instead I mostly napped.  I kind of need to catch up on sleep too!

Otherwise I mostly spent the day making phone calls, setting up appointments, and making sure Connor has all of his paperwork for school ready.  Before I had Connor, I had absolutely no idea just how much time this sort of thing would take up-- updating his emergency files, keeping up with insurance referrals and making sure his prescriptions stay up to date is a full time job in itself.  I'm glad that I'm able to stay home and manage Connor's care; I think it would be pretty difficult to try and juggle working and taking care of the little guy, though I know a lot of families do it.

In other news, I was so frazzled by all the craziness going on last week that Jer and I completely forgot that August 11th was the two year anniversary of him getting blown up.  It's not like we celebrate the day or anything (think they make a Hallmark card for that-- Congratulations On Your Near-Death Experience or some such?) but I do think it's important to acknowledge it as a life-changing event.  Jeremy is doing extraordinarily well, I'm happy to say, and after a lot of hard work he's improved far beyond the doctors' prediction of what kind of function he might be likely to end up with.  Though he still walks with a noticeable limp, has difficulty on uneven terrain and after a busy day on his feet ends up with quite a bit of pain, he is able to do pretty much anything he sets his mind to-- even running, though he doesn't do that very often as it's not great for his feet.  He uses weightlifting to keep his body in tip-top shape so that his leg muscles are as strong as possible and he's not carrying around a lot of dead weight, so to speak, that would put more pressure on his feet.  This means that right now he looks a whole heck of a lot like a blue-eyed Vin Diesel. 

I don't really mind.  At all.

So the recovery process for him is over-- he's probably not going to continue to improve much after this, and his functionality is probably at its peak right now.  But hopefully a decade or two down the line technology and medical science will have improved enough that he'll have some good options when it comes to looking at replacement parts.

Maybe he can have robot feet. 

~Jess

In Which I Have A Birthday

Today was my birthday!  I am now officially somewhere between the ages of 25 and dead, and I plan on sticking to that age for the next several decades.

I spent my birthday being a mom, which is pretty much what I do every other day of the year.  But that's okay; I had a great time with my little guy.

And also the day involved a lot of chocolate, which was awesome.  Chocolate is the official food of birthdays as far as I'm concerned.

Connor and I went to physical therapy in the morning, and then stopped for lunch (and chocolate) and to pick up a new book, because a birthday without a new book would be no kind of birthday at all.  Then it was off to the hospital, where we met up with Jer in the Orthopedic waiting room.  We spent about a half hour talking with the doctor, interrupted every two or three minutes by a round of ear-piercing shrieks from Connor.  The little guy is expressing how much better he feels in a big way, at the moment.  I'm pretty sure you could hear him from the waiting room. 

So the end result of the exam was that yes, Connor is partially dislocating his knee, but we don't have to worry about it!  Turns out that everything is just kind of loose in there because that's just how he's made, and so he's not injuring anything by slipping it in and out of the socket.  He doesn't need braces or surgery, and as long as he's not experiencing any pain he can pop the thing in and out of place all day if he wants to.  So that was fantastic news.

I guess we've just got a little Houdini on our hands-- bet he could use that trick to get out of some tight spaces!  And also he can add this to his bag of Awesome Things To Present For Show-And-Tell at school.  Showing off a partially dislocated knee would beat out little Johnny's Pokemon card collection or Susan's pet goldfish every time.   

So the rest of the day was spent quietly at home; Jer brought me Pad Thai for dinner from our favorite local Thai restaurant, and it was delicious.  I spent some time reading, working on sewing projects and just generally relaxing with my family. 

I think that's a pretty good way to spend a birthday!

~Jess

In Which Connor Is A Maestro

Today was another day filled with much needed quiet time in our house.  Jeremy brought me breakfast, because he is amazing and romantic like that, and he spent most of the day with Connor while I alternated between transcribing some old writing from paper to electronic archives and working on various sewing projects.  I'm currently in the middle of my "the crisis is over and now I'm exhausted" state, which makes me really not want to do anything too taxing.  So transcribing and sewing hems were about the most challenging things I wanted to do today.

Connor's good spirits continued all day, and he didn't have a single seizure.  He was still a little limp and tired, but I'm not really surprised by that-- upping his keppra tends to have that kind of effect on him.  He spent a little bit of time playing with his keyboard; he's figured out that if he presses the "demo" button it will play music indefinitely and he doesn't have to touch it.  He's just not quite sure where the demo button is on the top of the keyboard, so he uses the "start at the right and bang the keyboard as hard as you can while moving to the left" method of finding it, usually pressing all of the rhythm buttons in the process.  It makes me grin and wince all at the same time.

But besides that, honestly I don't have a whole lot to write about today.  And I'm completely okay with that, dear readers.  I could use a few more days like today!

~Jess

In Which Connor Does A 180

Well today was about eighty gajabillion times better.

Not only did Connor have absolutely zero seizures today, but he was in a better mood than I've seen the kid in weeks.  We're talking a super-happy, giggly, shrieking-loud-enough-to-shatter-glass sort of mood.  Apparently he was feeling just a tad bit better.

His muscle tone was still totally shot-- carrying him felt a little like hauling around a bag of wet cement today-- but I'm not really surprised by that given the medication changes, the events of the past two days and also the fact that he stayed up until four in the morning last night.  Still, today was such a vast and dramatic improvement over the past week that it reminds me pretty sharply of what happened when we took Connor off the tegretol last year-- except for the part where I was completely freaking out about Connor having three seizures in a day.  Now I don't really start freaking out until he has six or seven seizures in a day. 

That's kind of a depressing trend. 

Anyway, so while nothing is confirmed yet I highly suspect that it was the lamictal that was causing Connor to have his latest major run of seizures.  The lamictal becomes much more potent in a rather unpredictable way when combined with valproic acid, and it may be that it was actually causing him to have more seizures rather than suppressing them.  That's the trouble you can get into when you start messing around with brain chemistry; there's a pretty small sweet spot. 

We'll be keeping him on the ativan for the next few days just to make sure that he transitions well, but I'm hopeful as always that this time the medication change will give him a little bit of peace and a much-needed rest.  We've had more than enough excitement around here to last us a long while.

Bring on the boring!

~Jess

In Which Connor Watches Entirely Too Much Hospital Television

Well guess where I spent a good portion of my day?

I'll give you a hint: they had cable television and ice chips.

Yes, I spent a glorious eight or so hours in the emergency room with Connor today, watching some show called The Mysteries of Alfred Hedgehog and wishing I was pretty much anywhere else.  The little guy had his first seizure at six in the morning, and proceeded to have one pretty much every hour on the hour until around 9:00am, which is when I used our diastat.  He actually had his fourth seizure while I was on the phone with the nurse from neurology, which was fun.

Our instructions from the neurologist as far as the seizures were initially pretty much the same-- wait it out and get his levels checked on Monday.  However the nurse was pretty concerned about the choking incident after the seizure in the van Connor had yesterday, and she asked us to go in to our pediatrician's today and get him checked out for aspiration pneumonia, just in case.  The neurologist was wondering if the sudden upturn in seizures might partly be because he was getting sick. 

So I called the pediatrician's office and they were completely unable to fit him in today, and told me to take him to-- you guessed it-- the emergency room.  We got there about 9:30 and were promptly shown back to a room.  There's one advantage to having a kid with Connor's kind of complex medical history; we don't do a whole lot of waiting and we completely bypass the screening process and the triage nurse.  Also we get a private room.  With cable television.

I got Connor settled in, turned on the TV for him (which delighted him to no end as he knows that hospital stays are the only time he's allowed to watch as much television as his little heart desires) and started the fun process of filling the doctor in on Connor's latest escapades.  About that time our neurologist called back again, and asked us to get a chest x-ray done and also a set of blood levels today rather than waiting.  So the ER doc put the orders in and less than five minutes later the tech came to whisk us back to the x-ray room.

Did I mention that I really like private hospitals?

Anyway, so Connor got his first set of x-rays done, and we were positioning him for his second when he started having his fifth seizure of the day.  This is the second time Connor has had a seizure in the middle of an x-ray session, and even though this was a different hospital we managed to once again freak the tech out pretty badly, though to his credit he handled it much better than the last tech Connor pulled this on.  I don't think they have that sort of thing happen very often.  Connor seems to be kind of rough on techs.

So we were there for a few more hours while they waited for his blood test results to come back.  His lamictal results won't be in until Monday, but the valproic acid and the pancreatic and liver enzymes all came back within normal limits and there was no evidence (thank goodness) of aspiration pneumonia.  The little guy's neurologist decided that since the valproic acid didn't seem to be helping, Connor should start working down off of it.  So he dropped the little guy's dose down from 5ml to 2ml and upped his keppra dose from 6ml to 8ml.  We're going to try and keep his seizures under control with ativan until the med change is complete. 

So we were discharged around 1:30 or so in the afternoon and made it as far as the first set of double doors when Connor began his sixth seizure of the day.  I promptly turned his chair around and walked back into the waiting room, where we proceeded to completely freak out the waiting patients, get the crash cart called, etc.  Since they hadn't entered our discharge paperwork into the computer yet Connor went straight back into his bed, where the little stinker soon regained consciousness and immediately began demanding that I turn on the television.  The kid knows our hospital stay rules about television and he was bound and determined to squeeze in every second of TV time that he possibly could. 

What could I tell him?  I made the darn rule, after all. 

So after a shot of ativan and another hour and a half or so of watching Alfred the Hedgehog's crazy and rather implausible deducting abilities we tried leaving for a second time and thankfully managed to make it out the door and home.  I stopped at the store first, because after a day like this one I planned on surviving until Jeremy got home and then locking myself in the bathroom for a couple of hours to spend some quality time lounging in a scented tub with a book and a very large piece of chocolate sour cream cake, and my home was sadly lacking in both bath salts and chocolate sour cream cake, which had to be remedied immediately.  Oh, and also we needed diapers, which was my excuse to buy everything else early and get an early start on the cake before Jer got home. 

Connor better have a better time tomorrow, because I don't think my waistline can take too many more days like today.

So we have instructions to bring him back in if the ativan isn't keeping the seizures under control: a scenario which is unfortunately not all that unlikely.  We'll be sticking close to home for most of the weekend just in case the medication change doesn't go well, because the last thing we need is for him to have more of these things on the highway. 

So yeah.  Fun times.

~Jess

In Which Connor's Brain Explodifies Again

Well that was not a particularly fun day.

Connor had seven seizures today, and he managed to cover just about all of the ways to get my adrenaline pumping.  He had three at home, two in public, and two on the highway.  The second seizure of the day was particularly nerve-wracking because I didn't realize he was seizing for a little bit since I was merging onto a highway, and then when I glanced back and saw his face turning gray there wasn't anywhere to pull over.  By the time the shoulder reappeared and I was able to pull to a stop, throw open the side door of the van and start pulling him out of his car seat, the seizure was over.  Unfortunately he'd aspirated quite a bit because of his upright position, so then we spent about five minutes on the floor of the van while he coughed and gasped and threw up his breakfast. 

Okay, never mind.  Make that eight seizures today.  He had another one just as I finished up that paragraph. 

Anyway, so I called the neurologist at around seizure number five and the message relayed was pretty much what I'd expected; give Connor some lorazepam and go get his levels tested on Monday.  The lorazepam doesn't seem to have done a whole heck of a lot for us, given that we've still seen seizures six, seven and eight today.  We haven't used the Diastat today because (except for the especially mom-panic inducing seizure in the car) all of his seizures have thankfully been pretty short.  I'm really hoping he's at least done for the night.

Oh, yeah.  And we had x-rays too of course, which we won't find out the results for until Monday, and not Thursday as I mistakenly told you yesterday.  Thursday is Connor's dental appointment.  Monday is Connor's orthopedic surgeon appointment, and also my birthday.  Maybe I'll wear a party hat to the hospital in honor of the occasion.

So now I am completely exhausted: too many adrenaline bursts in one day!  And if I feel like that, goodness knows what Connor feels like.  Hopefully tomorrow will be better and we won't end up having to take him in.  While the emergency room does have free cable television and all the ice chips I can eat, I think I'd really prefer to stay home.

Bleah.  No more seizures, kid!

~Jess

In Which Connor Gets Ready For X-Rays And I Worry About My Boy

Tomorrow I'll be taking Connor in to get x-rays done of his trick knee.  His appointment with the orthopedic surgeon (the same one who did Jeremy's skin graft) is next Thursday and this will give them plenty of time to take a good look. 

I don't think we've actually x-rayed his knees before; we've done his hips, ribs, spine, skull, and hands as best I can remember.  I'm surprised the kid doesn't glow in the dark. 

I'm hoping we'll get some good answers out of that appointment.  Jer and I have noticed in the past couple of weeks a significant difference in muscle strength between his left and right leg that wasn't there before; the left is noticeably weaker.  We're not sure if this is related to the knee or if it's due to all the paralysis caused by his seizures.  And unfortunately it's not as if he's stopped having seizures; he had four today.  He spent most of the day sleeping.  It's a little soon for us to know whether or not the medication change is going to help get them tamped down again; we should know that in another three or four days. 

I'm not sure what an issue with the tendons in his knee would mean as far as his continued ability to stand and bear weight on his left side.  There's not really any point in speculating until we know exactly what's going on in there, but I can't help worrying about it.  He's worked so hard to get to the point where he is today. 

I'm assuming we won't hear any results from the x-rays until our appointment next week, so I'll keep you all posted.

~Jess

In Which I Eat Gerbil Stew And Grow An Herb Garden For Nefarious Purposes

Today we got Ellen's letter back from the translator!  So now we just have to print it out and figure out which pictures we want to send with it and we'll be able to get her care package in the mail. 

I'm so glad that we have a translator available to us, though I wish I knew Thai well enough that we didn't need to use one.  Since I spent quite a bit of time in college studying various translations of poetry and fiction, I'm well aware that word choice can make such a difference in the tone and meaning of a letter.  While I have no doubt the translator did an absolutely fantastic job-- she has a ton of experience and a great reputation-- I'm anal and nit-picky like that and wish I could do it myself.  Maybe one day a few years in the future I'll be good enough to manage it.  In the meantime we'll rely on the translator.  It's either that or write her letters composed entirely of the eight or so words I know in Thai.  No doubt they would make a really good impression.

Of course I could always save us some money and plug the letters we write into Google Translate, because it does a really professional job.  It's easy to determine just how accurate of a translation you get with the program-- you just copy whatever you've written into Google Translate, change it over to Thai, and then change the Thai back to English.  Here's the first paragraph of our letter:

"Hello!  This is our first letter to you, and it’s so difficult to figure out what to say because we have so many things we want to tell you.  We are so excited about making you a part of our family, and we can’t wait to meet you for the first time!  Our adoption dossier is in Thailand right now but it will probably be many months before we are cleared by the government to travel, so in the meantime we’ll be sending you packages and writing you letters so that you can get to know us a little better and to make the wait not seem quite as long."

And here's Google Translate's version:

"Hello!  (untranslatable sentence) Our dossier is accepted in the country right now.  It may be several months before we were washed out by the government to travel, so in the meantime, we will send you a package and letter writing you so that you can get to know us a little.  Better and do not seem to be waiting a very long time. "

See!  Our daughter could have tons of fun trying to figure out what the heck we are talking about.  Highlights include when I tell her about roller derby, which is translated as "a woman who is very popular here and has been on a roller skate," and about how we don't let the gerbils out in the house because "I would love to make dinner out of them."

Yum.  Gerbil stew is my favorite.  Oh, and also I apparently grow an herb garden because I'm planning on cooking my mother.  Sorry, Mom.

So I think I'll let a person who actually knows what they are doing translate our letters into something that, um, makes sense.  That way our daughter won't believe that my cooking is quite a bit more exotic than the average American household prepares.

Yeah.

~Jess

In Which I Go To Bootcamp And Am Not New Anymore

So today was the first day of my league's annual roller derby boot camp!

It was a ton of fun, but honestly it was also really, really weird because this time I was one of the people doing the instructing, instead of the wobbling around and falling all over the place.  Well, okay, I did some of that too.  But mostly I was helping out one of the New Bruisers, which to me kind of means I'm officially not a New Bruiser any more.  I've been playing roller derby for almost a year now. 

Whoa.

I remember just how incredibly nervous I was the first day I showed up.  All of the new ladies were fantastic and had a whole lot of heart.  Most of the girls-- even the greenest-- have more skating skills than I did at the time.  I hope that all of them show up again next week for the next lesson, and that in a few months they'll be booty blocking with the best of them!

But yeah-- being referred to as a "skating veteran" was seriously weird!  Maybe I'll get used to it by next year's bootcamp.

~Jess

In Which We Take It Easy And I Smell Like A (Non-Magic) Pickle

Today we mostly stuck to the house, though we did take a lovely walk around the neighborhood.  I'm feeling a little under the weather, though I think I'll be pretty much over whatever this bug is by tomorrow.  Mostly I just feel a little washed out.  It may be that I'm still catching up on sleep and feeling the effects from not having enough for so long.  Jeremy let me sleep in today, which was fantastic. 

Connor only had one seizure today, which means that hopefully his medication is starting to kick in.  I put a swimsuit on and we played in the tub for a while, which he enjoyed.  I haven't taken him down to the pool much this summer, and I really need to take him at least a few times before he's back in school!  He doesn't start up until September, but that's not too far away.  He'll be doing preschool again with the same teacher, which we're pretty excited about.  His classroom last year was awesome, and I'm sure it will be just as great this year.

Other activities today included a trip to the used bookstore across town to look for more graphic novels, and a little bit of cleaning.  Also I dyed a shirt with tea to make it look aged for my steampunk costume.  I used vinegar to set the dye and now I smell like a giant pickle.  Oh well; hopefully the shirt will look pretty good.  I'm washing it right now, so we'll see what it looks like when it comes out of the laundry.  Then I'll start replacing the plastic buttons on it with some neat pearl buttons I found at a local antique gallery. 

Sewing projects are fun!

~Jess

In Which Connor Wears His Wedding Hat And I Read About A Magical Cucumber

Connor had four seizures today, but they weren't quite as bad as yesterday.  It'll probably take a few days for his new medication to kick in.  Otherwise he had a great day, and though he seemed a little tired he was in a pretty good mood.

We spent the afternoon at a lovely wedding, which of course meant Connor had to wear his Wedding Hat.  He has an adorable tweed hat that makes him an instant girl magnet, and he wears it for special occasions.  Also he wore a button down shirt, pinstripe slacks and his bright red converse sneakers.  There was so much cuteness that my brain almost exploded.

I took pictures but of course I have yet to buy another camera cord, which means that I can't show them to you yet.  I promise I will do this soon, so that you can also marvel at the amazing adorableness that is my son.  Plus I swear the kid has grown another inch.  He's getting kind of ridiculously big.

I also stopped by the (sadly going out of business) bookstore today, where I picked up some graphic novels for our daughter Ellen.  I've been talking with our local English Language Learners coordinator about how to help Ellen with her English before she arrives here, and he suggested sending her adventure books.  I'm not exactly sure where her reading level is, so it's difficult to know what exactly would be appropriate.  I figured that graphic novels might be a good compromise because even though the vocabulary might too advanced for her the pictures provide context clues and they are engaging enough that she might take the time to look up the words instead of getting frustrated with them like she might with a book that is all text.  I'm figuring that I'll try and send one or two in each care package.

So I scoured the Independent Reader section and found the first two issues of Bone and also Magic Pickle, both of which I have heard are very good. We figure a developmental age of around 9-10 would probably be about right, though her English may not be quite up to that level yet.   

I'd love recommendations for future purchases if you all have any!

~Jess

In Which Connor Has A Bad Day

Well, Connor had another one of those days that involved multiple seizures and Diastat, which was not particularly fun.  So we talked with his neurologist and we've upped his Depakote.  Of course I just had all of his medication forms for school filled out, and now they're already out of date.  Oh well.

He spent most of the day sleeping, and he woke up about the time Jeremy got home.  We put on a movie for him about deep sea diving that I'd checked out from the library as part of our lesson on the ocean.  He really seemed to enjoy it, as it had music and a whole lot of interesting and brightly colored fish.  He alternated between looking at the video and staring at his daddy, who was snuggling with him on the couch.  That kid loves his dad like you wouldn't believe. 

Unfortunately I think I might be coming down with a bit of a cold, which I'm not really surprised by given my sleeping habits over the last week or so.  Hopefully it will be a quick bug and I'll be over it within a couple of days.  In the meantime I have the perfect excuse to drink large quantities of hot tea and also to eat tons of dark chocolate, which contains all sorts of antioxidants and is probably good for getting rid of colds.  That's my story and I'm sticking to it.

Anyway, so keep your fingers crossed that both Connor and I will be feeling better in the morning.  We've got things to do!

~Jess

In Which I Don't Sew After Midnight

Today I took Connor to occupational therapy, where he quite happily refused to touch anything, and then we stopped by a fabric store on the way home.  Now that the lovely fabric store around the corner from my house is gone, the nearest is in Tacoma, so it makes sense to get my shopping done there while I'm in town rather than making a separate drive.  I picked up three yards of lovely teal satin so I could get started on the bustle for my steampunk roller derby costume.  Even thought the bustle is only going to be knee length at its longest point, I'll use nearly every inch of that entire three yards.  Bustles use a lot of fabric.

Also this is the only piece of clothing I am ever going to make that will actually make my butt look bigger.  It's not like I need a whole lot of help in that department, given the amount of chocolate I consume on a daily basis.  Oh well.

Then I stopped by a coffee shop so I could stay awake the rest of the day.  I'm not addicted to caffeine yet, but if Connor keeps up his current sleeping habits I could easily get that way, dang it.  He's still awake right now, of course, and judging by the amount of sound coming from his room he's likely to stay that way for a while.  Oh well.

I have the pieces all cut out for the bustle now, but I'll wait to start sewing it until tomorrow.  I work on a lot of my projects late at night, but I've found that any time I pick up a needle after about ten in the evening I'm just going to end up stabbing myself with it.  Also my stitches end up really wonky after about two in the morning.  Projects that involve painting or glue are a lot more forgiving, so I'll stick with those late at night.  Despite not sewing, I've been getting quite a lot of work done of my costume lately.  You'd be amazed what you can do with a seven hour or so block of free time.

So at any rate, things are moving right along!

In Which My Friend Ellen Goes Home And Connor Picks A Book

Ellen flew back home today, which makes me sad.  I wish that she lived closer!  I need to convince all my friends to move to the Pacific Northwest.  I figure I have a pretty good chance of doing it if I only allow them to come up and check things out in the summer time.  They can find out about the winters here once they've already signed a contract for a house.

So after we dropped Ellen off at the airport, Connor and I went to the library and picked up a learning box!  We haven't done as many of these this summer, and I want to get back into the habit. 

The box we picked out was chosen because of a major event; Connor spontaneously asked for a specific book for the first time!  Normally I pick out two books and he chooses between them.  Well, this time we were stopped by a display chatting with Carol, the children's librarian, and Connor started staring fixedly at the display and signing "want, want" over and over again.  I wasn't really responding to him as I was busy talking, so then he started vocalizing and doing it-- which gets my attention really quickly in the library.  So I picked a random book off the display and showed it to him. 

"Do you want this one?" I asked.
"No," he signed emphatically, and then went back to signing "want" and staring at the display again.

We repeated this exact same scenario with seven or eight books, with Connor shaking his head "no" more and more pointedly.  He was starting to get a frustrated look on his face.  Obviously Mom just wasn't getting it.

Finally I picked up the last picture book on the display-- a beautifully illustrated version of Rabindranath Tagore's poem "Paper Boats."  Connor's face lit up, he waggled his eyebrows at me, and nodded "Yes!" 

So we brought home Paper Boats, and I will read this book to my child as many times as he can stand to hear it.  I'll also scour the used bookstores for a copy for us to commemorate the occasion.  Connor picking out a book all by himself may not seem like a very big deal, but for this child to want something enough to actually persistently ask for it is extremely rare and deserves celebration!  And also the fact that the kid's request was for a book makes me really, really happy.  You know how I am about books.

Anyway, we picked out the "Ocean" box to take home, and I think I'll take him to the Working Waterfront Maritime Museum as a field trip so he can see as many boats as he'd like.

Yay for reading!

~Jess

In Which I Can Have Sleep And I Am Excited

Sleep!  Sleep is happening!  This will be a really short post as a result, because after five hours of sleep in two very full days, my bed is calling my name in a major way.

I swear I will be more coherent tomorrow night, after a full night's rest.  If that happens.  Keep your fingers crossed.

We've done all kinds of fun things in the past few days.  Ellen and I have spent our time on crafty-type projects, visiting antique stores, eating way, way too much really good food, visiting with mutual friends and just generally enjoying each other's company.  Also today we somehow ended up in the middle of a creek, which wasn't really surprising.  Ellen and I have a history of wandering into the middle of creeks.

So anyway, it's bedtime now.  I can't wait to get some sleep!

~Jess

In Which I Will Never Sleep Ever Again

So. . . tired. . .

Connor pulled an all-nighter last night and is working on his second in a row. 

And. . . that's about all the energy I have for blogging.  The end.