In Which Connor Takes A Field Trip And Touches Many Things

Today Connor's class drove down to Olympia for a school field trip to the children's museum!  The kids could either ride the bus or drive down with their parents, and I chose to drive down with Connor this time since the bus was going to be a bit crowded.  Both the morning and afternoon preschool classes came, so there were quite a few kids, and that way if Connor had an issue on the way down we wouldn't be delaying the field trip for everybody.

But we did drive up to the school to meet everyone there and start the trip off together.  Even though I'd been talking with Connor about the field trip, I think he had this idea that it was going to be a field trip at the school or something, because when we got back in the car he thought we were going back home and he got really mad.  "No byebye!  Want more!" he signed over and over with a huge pouty-face on.  It wasn't until we got on the highway that he finally realized I'd been telling him the truth and that we were not, in fact, simply driving back to the house.

So despite the rough start, once we got there things went smoothly; the little guy had a blast, and it was really fantastic to see how much more he participated in the activities this year as compared to last year.  Last year there were only two things he wanted to do.  He wanted to sit in the gardening section and wear galoshes on his feet and also his hands, so that he wouldn't have to touch anything, and also he wanted to hang out in the bathroom, where he didn't have to touch anything.  Pretty much the whole mantra of last year's field trip was "I don't want to touch anything."  Since the whole point of the children's museum is to have a whole bunch of things for kids to touch, Connor was not really thrilled with the trip.

So what a change a year can bring!  This year his mantra was more like "Well, if you really want me to touch this stuff I guess I'll make a half-hearted attempt to do it since it seems to make you so happy."  That's a major improvement in my book. 

We started out at the water table, and not only was he okay with me putting his hands (well, okay, his right hand) in the water, he actually reached out and gave it a few swipes himself!  He also enjoyed dropping various toys into the water and watching them float down the table.  After a few minutes the noise and crowd started getting to him, so he and I moved into the toddler room, which as always was practically deserted.  We spent some time at the lentils table, which ended when Connor began flinging the lentils out of the table and on to the floor.  Then we moved on to the sensory table, where the little guy spent some time feeling various swatches of material-- including sandpaper-- with an open palm. 

I was so proud I thought I would burst, and I really wanted to celebrate by telling the entire room about it.  Unfortunately the only other parents who were in the room at the time were not part of our field trip, and they were involved in a sort of one-up discussion about how many languages they were teaching their children to speak.  I thought that interjecting into their conversation with "Hey, guess what!  Your child might be trilingual, but my child just touched sandpaper voluntarily, and get this-- he did it with an open palm!  Ha-- beat that!" might not be particularly appropriate or very well received. 

So I'm telling you all about it instead. 

Anyway, so we took a break to eat a quick lunch and then cycled through the rest of the exhibits.  The galoshes didn't fit on Connor's feet anymore, so he had to wear clogs instead.  I am sad to report that clogs are apparently not nearly as exciting as galoshes, and apparently wearing the galoshes on his hands had lost its appeal, possibly because he wasn't so concerned about not touching anything. 

All of the touching things began taking its toll though, and Connor started drooping over lunch.  Half an hour later he told me he was tired and started waving goodbye to everyone.  Even though the field trip wasn't over, I decided to go ahead and take him home, as it was obvious that his energy was fading and I didn't want to overtire him. 

I figure it was the right call to make, because he fell asleep in the car on the way home.  And not only did the kid touch a whole bunch of stuff, but he kept his hearing aids in the entire trip!  I think he earned that nap.

So I drove home, opened up the front door and wheeled Connor down the hallway into his bedroom, where I put him down to finish his nap.  I turned on his monitor and walked into the living room, where I discovered my reading lamp in about eighty pieces on the floor.  Evidently one of the cats (and I wasn't there, but I can guess which one it was) got a bee in his bonnet and knocked the lamp off our glass-topped table and on to the floor.  Not only did the glass shade (which was a lovely antique violet) shatter, but somehow the cat managed to knock the lamp down in such a way that the top of the base snapped off, leaving it totally beyond repair.

It was my favorite lamp too, dang it.

So I was sad.  However I wasn't too sad, because this gave me an excuse to visit the antique mall.  So after Connor woke up from his nap, we piled back in the car and drove to Tacoma, were we spent the next two hours tootling up and down the aisles of the antique mall looking at every single lamp in the entire place.  I ultimately bought the second one I saw of course, but it was important to look at all the lamps just in case there was something better hidden in a far corner of the store.  Connor has been going to this particular antique mall with me on a regular basis since he was six months old, so this was old and familiar territory.  He likes the mall because there are many interesting things to look at, but he doesn't have to touch anything.  So it was a nice counterpoint to this morning's field trip. 

The new lamp I bought is a flowery, elaborate, brass affair with an extremely unusual pink petal-shaped glass shade, and I absolutely love it.  Jeremy declared it to be "very stabby," as some of the brass leaves coming off the base are pretty pointy, and though I don't think he actually likes the lamp this is relatively close to a seal of approval from him.  I'll try and take a picture of it at some point so you can see it in all its stabby, pink-petaly glory.

And as a great end to a pretty great day, the kid actually went to sleep shortly after I put him down tonight, and he's stayed asleep.  Maybe I should go on big make-him-touch-stuff sorts of field trips more often!

~Jess

In Which It Is Memorial Day

Since today was Memorial Day, Jeremy and Connor both were off of work and school respectively.  We spent the day quietly at home, recovering from our busy weekend and catching up on housework. 

Jeremy's been in the military for about six years now, and his current plan is to stay in for life.  We have many friends who are currently serving overseas and are separated from their families and in harm's way, so I took a little time today to think about all of them and their loved ones. 

Honestly Memorial Day for me isn't really a holiday-- it's kind of a sobering reminder of just how lucky I really am. 

~Jess

In Which We Go Skating

Today we had a friend drive down to visit, and we all went out roller skating.

Our local rink had free admission for military families because of the holiday, so our whole family got in free, which was pretty great.  Connor had a whole lot of fun whizzing around the rink pushed by his dad, who likes to pop wheelies with the wheelchair to make me freak out. 

It's a good thing the kid's seizures aren't induced by flashing lights or he'd probably have a major problem with our local skating rink.  Since that's not an issue for him, though, he spent a whole lot of time watching the various patterns the lights made on the floor.  He seemed to really enjoy himself.

It's kind of crazy, but I've spent so much time at the rinks that not only do I know all the songs they play at each skating session, but I know what time and order they do the activities in as well.  First are the races-- girls and then boys, from youngest racers to oldest-- and then it's the birthday song (if there are any children holding a party there), followed by the Hokey Pokey. 

After that is what the skating rink calls "the bird dance" and what we always referred to as the "chicken dance," only the repetitions never get any faster, which totally sucks all the fun out of the song.  And then they play the modern addition to the rink activities-- the Cha Cha Slide song.  This song is made particularly exciting because it involves jumping, which all the little kids attempt and then promptly fall down, making for a challenging obstacle course on crowded skate days. 

I think maybe I go to the skating rink too much.  Oh well.

~Jess

In Which We Visit Leavenworth

Today Jeremy and I left Connor in Joanna's more-than-capable hands bright and early in the morning and headed out for our day trip to Leavenworth!

Visiting Leavenworth is one of those touristy-but-awesome things that you just have to do if you live in Washington state for any period of time.  It's a town nestled in the foothills of the Cascades, and the entire place is decked out like a Bavarian village.  And they take it really seriously, too.  They have professional yodelers.  Pretty much every single street sign and shop is named something like Der Wienerschnitzel Gas Stationhaus, and even the local McDonald's is decked out in white stucco and wooden scroll work.  They have an annual festival celebrating the accordion.  Their town mascot is a nutcracker named Woody Goomsba, and you wouldn't believe their tourism commercials. 

No really.  That's really one of their tourism commercials.  I am totally not making any of this up.

So basically it's like what would happen if a Disney World employee went to Germany, got really really drunk, and then doodled on a napkin and built the result.  A really, really drunk employee-- a quick google search for "Leavenworth winery, brewery and tasting room" brings up thirty-four results, twelve of which are located on or within walking distance of the main street of the town.  Some of them were literally next door to each other. 

Did I mention that Leavenworth has a population of just over 2,000 people?  If you assume a quarter of the population is under age, that works out to one drinking establishment per 44 people.  Whoa.  And the ratio of mural-to-person might actually come out at about 1:1, because pretty much every available paintable surface had some sort of Bavarian Domestic Scene plastered on it.  The mural painters in Leavenworth are probably living very, very well. 

Obviously Jeremy and I were not there for the beer.  Luckily there were plenty of other things to do there besides drink, though.  We ate lunch, which involved both wienerschnitzel and red cabbage (served to us by women dressed in traditional dirndls-- also known as Those Poofy German Dress Thingies).  Then we bought cheese.  They had really good cheese.  Also we bought some roasted nuts.  And some chocolate.  Basically we munched our way through Leavenworth.

The scenery was truly lovely and the town itself was charmingly picturesque, if a trifle overdone.  We found a lovely park to walk through that followed the Wenatchee river and strolled along the path for a while, stopping on a bench to soak in the view and watch a trio of rafters make their way downstream.  After that we made our leisurely way back to the town and wandered in and out of stores and through the small art market set up in the central park of the town.  It was lovely to spend so much time with no particular goal in mind: just enjoying the day in each other's company.

So we drove back over the mountain pass in early evening, stopped for dinner at a little restaurant in downtown Auburn, and then ended the night at (where else?) our local bookstore, sitting in the comfy chairs in the back with a hot drink in hand.  All in all it was a lovely day!

We might take the time to go back in the winter, when they have a lot of additional activities like horse-drawn sleigh rides and dog sledding.  We probably would not come back with Connor, though-- the town wasn't remotely handicap accessible from what we could see; most of the buildings were multiple stories (with shops on the upper stories that could only be reached by stairs), aisles were narrow and crowded, and many of the doorways into the ground floor shops had uneven thresholds.  So sadly I don't think it's a place we would take the little guy, and Jer might have trouble with the place a couple of decades down the line.

But Jer and I enjoyed ourselves, and now we can say we've officially visited Leavenworth, so we can check that off our list of Touristy Things To Do In The Pacific Northwest. 

Gute nacht!

~Jess

In Which My Gardening Attempts Are Thwarted

Jeremy has a four-day weekend because of Memorial Day, which is pretty great.  Four-day weekends on the majority of the national holidays are one of the perks of having a job in the military. 

So while Jer and the boy spent some quality time together, I grabbed my shovel and clippers and trooped outside, determined to knock out a whole lot of work in the garden.  I was out there for about an hour-- just long enough to tackle a huge mess of dead heather in the front yard that's been driving me nuts for a year-- when the skies opened up and rain started pouring down.  Within about two minutes I was completely drenched. 

Here's the thing: it just doesn't rain like that in Washington.  In Washington, usually we get a few hours of slow drizzle interspersed with dry-but-gloomy weather.  Well, not today.  Today not only did we get a real storm, with thunder and lightning and everything, but the rain was absolutely freezing.  So I ran around frantically throwing dead heather into the wheelbarrow, raced around the side of the house and left it there, grabbed my tools and slogged into the house, where I stood dripping on the front mat until Jeremy brought me a towel.  So much for my day of gardening!

To add insult to injury, as soon as Jeremy left for his workout and I put Connor down for his nap (which meant I was stuck inside, as we don't have an outlet for the little guy's monitor on the front of our house) the clouds broke, the sun came out and it turned into a beautiful day.  Then shortly after Jeremy got back home it started raining again.  Evidently the Pacific Northwest is toying with me.

I took a long hot bath and then spent the rest of the day inside recovering from my ordeal by sitting in an armchair reading and eating Tillamook Mudslide ice cream.  So at least the day wasn't a total waste.

~Jess

In Which I Am A Food Snob

So it's finally springtime in the Pacific Northwest, and you all know what this means in my household.

Yep.  It's food snobbery time.

We participate in a Community Supported Agriculture (CSA) program year round and absolutely love it, but in the winter time after a while we get really, really tired of root vegetables and apples.  So when spring hits our CSA suddenly there are all these wonderful fresh greens, asparagus, rhubarb, and (soon!) strawberries and about the same time our weekend farmer's market opens up five minutes from my house.  Somehow the big influx of ridiculously tasty freshly-picked produce goes to my head.  That's when I go a little nuts and suddenly start announcing the dinners I make to Jeremy like I'm running a fancy restaurant instead of slapping something together before roller derby practice.

Like tonight, for example.  Tonight I made a mixed greens salad with smoked salmon, rosemary-dill sheep's milk cheese, apricots, sunflower seeds and spiced blackberry vinaigrette, served with a slice of fresh honey wheat berry bread and garlic butter.  With the exception of the apricots, everything was either from the CSA, farmer's market or homemade.  It took me all of ten minutes because everything was already in our fridge, which didn't stop me from being tremendously proud of it and expecting wild praise for my cooking genius.  Genius, I tell you.  I chopped things!  And I put them in a bowl!  Shouldn't I get some sort of award for that? 

I know from experience that I will continue to announce the meals I make to Jeremy in capital letters until about July, which is when the CSA produce starts really outstripping what I can cook and instead of being thrilled about having so many fresh, tasty things in the house I end up in a cooking frenzy once a week, attempting to cram produce into as many dishes as possible and foisting said dishes off on other people so I can make more room in the fridge for the new delivery of fruits and veggies.  Almost all of these dishes will contain some form of summer squash, including the brownies.  I will not tell the people I am foisting the brownies off on that they contain zucchini. 

So if I show up on your doorstep around mid-July, consider yourself warned. 
~Jess

In Which Connor Paints A Picture

Connor felt significantly better today!  I think he's starting to get used to the new medication.  Of course we're going to change it up on him on Friday-- his dose will go up-- but hopefully he'll adjust to that quickly too.

He did some glorious finger painting today; here he is painting a picture for his sister.  Evidently finger painting is Very Serious Business.  I love how he's got both hands flat down on the paper; look at how far he's come with his sensory issues!  Most of his early painting involved just the very tips of his fingers and a whole lot more wiping the paint off on his hair.

Not that he still didn't need a bath afterwards, but now at least I don't have to put a huge drop cloth under his chair, which is definitely progress!

He had no seizures today, which was also progress.  So it's back to school for the little guy tomorrow!  I'll be spending my free time either out in the yard or at the plant nursery, since there's a whole lot to do out there.  Hopefully the weather will cooperate with me.

I'll also spend some time figuring out what Jer and I are doing on Saturday.  We've got Joanna all day and are planning on taking a day trip somewhere just the two of us as a late anniversary celebration.  I can't wait!

~Jess

In Which Connor Is Tired And An Owl Is Harassed

Connor spent a good portion of today barely awake.  I think the new medication is having a sedative effect.  Hopefully he'll get used to it over the next week or so and it won't be as much of an issue.

He had two seizures today, but they were both relatively short.  He also took three naps today, which for him is a heck of a lot of naps.  Of course, now it's well past his bedtime and he's wide awake.  It figures.

My parents left today; it was great to have them here!  I was sorry we didnt' get to go out and do more-- because Connor was feeling so under the weather we mostly ended up just hanging out around the house.  It was still really nice to see them, though, and I hope they can come back and visit us again soon!

Because it was so lovely and sunny outside today, this afternoon I took Connor out and laid him down on a blanket in the grass, where he took a nap while I did some weeding.  Having Mom here definitely jump-started my gardening habit!  As soon as Jeremy got home from work I rushed down to the nursery, where I bought a beautiful weeping dwarf Japanese maple for the area right by our new deck.  I spent the next hour or so digging a hole for it.  We have lovely soil in this area that's easy to dig, but then it's offset by being chalk full of large river rocks, making it almost impossible to use a large shovel.  So I ended up digging a hole for the tree with a hand trowel, which provided me with my exercise for the evening.  It was nearly dark by the time I finished, but I got the tree planted and watered in.  Hopefully it will be happy in its new home.

It was towards dusk that I heard a flock of crows start making a big ruckus in the trees a few houses down.  I've figured out what this means by now, so I stopped working and looked up.  A minute or two later a barred owl glided across the sky, headed for the wooded park.  He was pursued by about fifteen crows, who were sounding the alarm at top volume.  I could hear the owl making chuckling little sounds of annoyance when he was directly overhead.

They quickly disappeared into the trees, but I could hear the crows for about five more minutes before they turned around and flew back over the house-- probably to get back to their nesting sites before the sun set completely.  The crows seemed very pleased with themselves.

So that was pretty neat!  This was the same type of owl as the one that ran into my sliding door last year, though I'm sure this was not the same one as it was quite a bit smaller.  I'm pretty sure I saw one half of a mating pair, because a little later in the evening I could hear two of them calling back and forth to each other.  Now that the deck is finished I may have to spend some more time outside at twilight!

~Jess

In Which Connor Has A Whole Bunch Of Seizures And We Have A New Gameplan

Connor didn't have such a hot day today.

He had six seizures, which was a trend rather in the wrong direction from the way we want to see him going.  He had his first seizure just after seven in the morning, so I called the neurology department and they got back to us very quickly.  They called our local hospital to get the medication levels that were drawn for Connor at the tail end of April and then gave us a ring back.

Turns out that Connor's body is metabolizing his Lamictal way too quickly-- his blood levels are less than half of what they should be and he's already on a pretty good dose.  So the neurologist is adding a drug called Depakote to Connor's regime.  This will have a double effect-- it will increase the efficiency of the Lamictal he's already taking, and it will act on its own as an anti-epileptic drug.  We're keeping his Keppra and Lamictal doses the same for now, and seeing how he adjusts to the new meds.

I have no idea where Connor got his crazy metabolism-- he sure as heck didn't inherit it from me.  I kind of wish I had it, though, because if I did I bet I could eat way more chocolate than I already do now. 

So that's the plan.  We'll be watching Connor closely over the next couple of days to make sure he won't have any adverse effects from the medication change; we're planning on keeping him home from school tomorrow just to make sure he's doing okay.  Hopefully he'll be able to go back on Thursday.  In the meantime, keep your fingers crossed for us that this medication will do the trick!

~Jess

In Which Connor Has More Seizures And I Buy A Whole Lot Of Plants

Well, looks like Connor may be on another seizure run.  He had three today, though thankfully they were all pretty short.  So it may be time to up his Lamictal again or something; he's had a bit of a growth spurt recently.  He's not showing any evidence of being sick right now, so I don't think that's what's going on.

Otherwise the day went well; other than a few derby-related activities I spent the majority of it with my parents.  My mom and I had to stop by a plant nursery "just to look," and you can imagine how that turned out.  We got back too late in the evening to get started on putting everything in the ground, so we'll be doing a whole lot of planting tomorrow.  I'm especially excited about a variety of coral bells we found called 'Georgia Peach'-- it's got leaves as wide as my hand and is absolutely gorgeous.  I can't wait!

And yes, I could absolutely talk about plant varieties all day.  Don't get me started.

Then we stopped by the grocery store.  My mom is a garden enabler-- she encourages my plant addiction.  If she and my dad ever move up here we'll probably end up supporting the local plant nurseries all on our own.  Our grocery store has a plant nursery out front, and so even though we went to the store for milk and dinner fixings we ended up walking out with a cart full of green, growing things. 

We had a blast!

~Jess

In Which My Parents Are Here And I Play Some Derby

Today was a pretty fun day!

This morning my mom and I drove down to the farmer's market and spent a little bit of time wandering around looking at all of the neat things they had for sale and drooling over the plants.  When Mom and I get together you can guarantee that some sort of gardening will end up happening.  We're like gardening superheroes or something-- when our forces combine we become the Power Gardeners!  Or at least Power Gardener Shoppers anyway; I tend to garden in quick, fierce spurts with long periods of benign neglect in between, so it's usually "survival of the fittest" in my flower beds once the plants are home.  This method probably doesn't qualify me for any gardening awards.

At any rate, we barely restrained ourselves from buying everything in the universe, and then we spent a few quiet hours at home before it was time for me to run off to my roller derby team lunch.  Usually the team gets together for a couple of hours before a bout and spends a little bit of time relaxing and socializing before we need to put our game faces on.  My parents and Jeremy joined me at the derby track later in the afternoon, while Connor played with Joanna at home.  Roller derby bouts are a too loud for the little guy's taste and definitely run past his bedtime, so we usually try and have respite care on bout weekends.  Also he had a short seizure today so he probably wouldn't have been in the best of moods anyway.

This was the first live derby bout my parents had ever seen, so that was pretty neat!  They enjoyed themselves quite a bit-- especially since I didn't break anything.  This was not Jeremy's first bout, but it was the first time he'd seen me play.  We had some friends there as well, so I felt like I had my own little cheering section. 

It was a great game; my team won, and we'll be competing in the championship bout in June.  Go Trampires!

~Jess

In Which My Parents Are Here!

My parents are in town for a visit!

Connor was pretty excited about them coming, and now that they're here he doesn't want to go to sleep.  So he's back in his room attempting to be part of the conversation by yelling at top volume.  Silly little guy.

I have a roller derby bout tomorrow, which I'm excited that my parents are going to get the chance to see me play!  It should be a great time.  But now I probably should go be social instead of sitting over here all by myself writing to you all.  Sorry!

~Jess

In Which Jer And I Have An Anniversary

My monthly article for Hopeful Parents is up-- you can read it here.

Jer and I celebrated our seventh wedding anniversary today!

In honor of the occasion, Jer took the day off and the two of us left Connor in Jo's capable hands and drove down to Olympia.  We wandered through the farmer's market, popped in a local roasting company to pick up some green, unroasted coffee beans (I expect to hear my kitchen fire alarm go off tomorrow morning) and strolled down to the little apothecary shop I frequent to buy a lovely new mortar and pestle-- perfect for making Ellen's favorite Thai dish, som tam-- and to restock on cinnamon and vanilla beans.  After that we returned to the car and drifted further south, where we stopped on a whim at a lovely state park called Millersylvania.

After that we watched a movie, ate dinner at a little sushi restaurant and finished the evening out at, of course, a bookstore and coffee shop.  What date of ours would possibly be complete without those two things?  It was the perfect ending to a perfect day.

Here's to a fantastic seven years!

~Jess

In Which We Have A Pretty Great Day

Connor took it easy today; yesterday's Diastat lingered in his system through the morning and into the early afternoon so he seemed kind of drowsy and quiet.  Of course, the one exception to that was when I put him down for his nap, and then he spent the last twenty minutes or so of his quiet time yelling at the top of his lungs.  He didn't need anything; he apparently just decided that quiet time should end early.  Once I got him up he lapsed back into quiet mode.  Go figure.

During his nap time our respite care worker, Joanna, came over with her massage table.  Joanna is a medical massage therapist by trade when she's not watching little guy, and she is very, very good at what she does.  So Connor had his not-so-quiet time, and I had an hour long massage.  Really, I'm not sure I would have survived this long if I didn't get a massage like this every once in a while.  I'm pretty sure that otherwise my neck muscles would be so tight my head would pop off like a cork or something. 

It could totally happen.

Anyway, so after my massage I oozed off the table and spent the rest of the day either cleaning or holding Connor, who perked up in the afternoon as much as a teething, still-cranky-from-yesterday's-seizure kid was going to do.  He got all cute and started giving me tons of hugs and snuggles to keep my attention, which he knows I have no immunity against.  Because I still needed to be productive today we worked out a deal; I would clean for ten minutes and then play with him for five.  We used the kitchen timer to keep track, and every time it went off for Mommy And Connor Play Time he applauded.  It was adorable.

So to sum up the day: no seizures, a clean house, a massage and tons of Connor hugs and snuggles.  All in all it was pretty great!

~Jess

In Which Connor Has A Seizure

Connor had his first seizure in almost two weeks today. 

The day started off just fine; the mobile petting zoo visited Connor's school today so he got to spend some time with farm animals, which was pretty neat!  The little guy's an old hand at that sort of thing since the horse barn he goes to also runs a petting zoo, but I'm sure he still enjoyed himself.  At some point during the course of the day he must have come into contact with someone who used lavender-infused lotion (or laundry detergent, or shampoo, soap-- the list goes on) because he when I went in to get him up from his nap he had some truly spectacular hives on the right side of his face and in patches down his right arm.  Whatever the source, the hives were pretty much gone by evening so it wasn't anything serious.

As an aside, though, what the heck is up with the walking-into-Connor's-room-to-discover-weird-medical-stuff schtick going on lately?  I'm starting to get paranoid every time I open his door.

Anyway, so when he woke up from his nap he was kind of ornery, but I didn't think anything of it because he was covered in hives and also teething (can you use that expression for a five year old?), and then the day kind of went downhill from there.  We went to occupational therapy and he was extremely uncooperative; all he wanted to do was chew on the vibrating toys.  After we got home his mood continued to sour.  In retrospect, I think he was feeling the seizure coming on.

I finally clued in to the fact that he was really feeling punky about ten minutes before his seizure when he kept insisting he was tired and asking to be held more and more frantically.  I put down what I was doing, picked him up, moved his oxygen condenser close (just in case) and sat down in one of our library chairs with him.  He closed his eyes and buried his head against me.  I sang him a song and rocked him a little bit until the seizure started and it was time to lay him down, start our timer and turn on the oxygen. 

I kept singing.  Sometimes he can hear me, and it seems to help him stay calm.

This one ended up being about nine minutes long, and I used the Diastat at five.  It was the still-conscious-but-jerking kind, and when he finished seizing his right side was paralyzed, which was a new twist.  Normally it's his left side that's affected.  I put him to bed and he's been asleep ever since.

So on the plus side, Connor may be starting to recognize when he's going to have a seizure.  On the down side, well, he had a seizure.  And also I didn't clue in to what he was trying to tell me until right before it happened. 

I'm hoping that I won't have any more chances to practice my skills in that area for a while, though.  Let's make it at least another two weeks, shall we?

~Jess

In Which I Am Really, Really Tired

So today I was supposed to spend some time cleaning up the house, because my parents are coming to visit us in a few days.  Instead, all I really wanted to do was take a nice, long nap.

I am so ready to not be sick anymore.  Being sick does not help me get myself motivated about doing anything (except for nap, of course)-- let alone be motivated to clean, which I have a hard time being enthusiastic about when I'm in peak condition. 

It does not help that Connor is no longer sick in the slightest, and he has zero interest in cleaning or in taking naps.  Luckily we had respite care today so I got a little bit done (lack of motivation, remember?) but that won't be the case for the rest of the week.  Mostly Connor wants to play, and play hard.  He is not remotely interested in playing any of the games I suggest either, like the "nap game" or the "quiet time game" or the "please let Mommy sleep just a little bit longer game."  He wants to play the kind of games that involve large amounts of high-pitched squealing and as much interaction with Mommy as possible.

Thankfully I think I'm over the worst of this bug, and so with a little luck I'll be able to pick up the pace later in the week.  Tomorrow Connor's got school and therapy, but the rest of the day should be devoted to cleaning.

And maybe a nap. 

~Jess

In Which Connor Scares The Bejeezus Out Of Me

So I walked into Connor's room today when his nap time ended to discover my child covered in blood.

He didn't seemed concerned about it at all.  He was giggling, wiggly and as happy as ever, only his face, hair, hands and bedsheets were liberally and artfully streaked with pink and crimson blotches and lines.  It looked like he'd been finger painting with a raw steak.

I, of course, was more than a little concerned.  I believe it would be accurate to say that I reacted the way most mothers would when in a similar situation; I completely freaked the heck out.  Connor and I have covered a whole lot of territory in the crazy medical emergency department, but walking into his bedroom to discover that he'd apparently been hemorrhaging all over the place was a new and terrifying development-- especially since I couldn't figure out where the heck he was bleeding from. 

My first thought was a head injury, though I couldn't figure out what he could possibly have hit his head on since he was square in the middle of his twin size bed.  I carefully parted his hair.  Nothing.  I felt up and down his sides.  Nothing.  I carefully rolled him over and felt his back.  Nothing.  Then I checked his hands, thinking he might have bit himself.  Nothing. 

When I pulled up his shirt to check his stomach,  Connor thought I was going to tickle him and gave me a big, open mouth grin.  A ribbon of blood spilled down his lower lip.  Oh, and that bottom tooth-- the one I've been telling you about the past few days?  Hanging by a thread.

Who knew a loose tooth could bleed so much?

After taking a moment to sit down and indulge in a fit of hysterical laughter (and coughing, as I'm still sick and miserable), I washed my hands, grabbed a tissue and carefully gripped his tooth, which came out without any pressure at all.  As near as I can figure out, Connor must have been pulling on it with his fingers (something he's been doing a lot lately) and managed to yank it most of the way out.  He's on an aspirin regime, and gums bleed pretty well anyway.  Then he kept putting his hands back in his mouth to feel the spot, keeping it bleeding and artfully decorating himself and his surroundings in the process. 

I kept a little pressure on his gum for a few minutes, and the bleeding finally stopped.  After I cleaned him and the bed up, I put my protesting child back down for a few minutes and went and sat down in the library.  I needed a cup of tea and some chocolate.  Badly.

So Connor lost his first tooth, and in his usual style managed to do so in the most dramatic way possible.  Only nineteen more to go. 

I can't wait.

~Jess

In Which I Am Sick

I knew that doing mouth-to-mouth on Connor while he was sick would come back to bite me.

I woke up this morning with my voice entirely gone.  And I feel lousy.  Really, really lousy.  The sad thing was that today was an absolutely beautiful day outside, and I would have loved to have spent it outdoors if I could have peeled myself off the couch.  I did manage to drag myself to the library and the grocery store, but that's only because my books were fixing to be overdue and we were almost out of diapers and cat food. 

Blargh.

~Jess

In Which Blogger Exploded And Now Connor Is Following Suit

As most of you probably know, Blogger went down a couple of days ago-- hence no blogging last night.  It's back up now, but unfortunately your lovely comments on my last post were deleted in their system maintenance.  Sorry everybody-- I appreciated all your lovely suggestions!  I'd love for to repost them if you have a minute so I can go back and look at them the next time we put together a care package.

So on to today!  Connor, who has apparently decided that now is the time for a major growth spurt, now has two loose teeth-- both of his bottom front teeth are wiggly.  Oh, and did I mention that his six year molars are now coming in too? 

Needless to say, he's kind of weirded out about what's going on in his mouth right now.  He keeps carefully putting his fingers in there, feeling his loose teeth and then taking them out and looking at them like there's something wrong with his fingers and that's why his teeth feel so strange.  He's also running his tongue over them a whole bunch.  He's drooling a ton.  And he seems to find vibrating toys really interesting right now; we have a busy bee therapy toy and he tries to fit the whole foot of the thing in there despite the fact that it's too big to get in his mouth.  Normally he doesn't want it anywhere near his face, but at the moment he can't get enough of it. 

Of course the vibration makes his nose itch terribly, so he has a routine.  He'll bite down on the bee for as long as he can stand, and then he jerks his head away and scratches his nose for a couple of seconds.  Then he lunges for the bee again.  He'll do this for upwards of thirty minutes at a time-- it's pretty cute. 

I might try and get him a vibrating teething toy to chew on since it seems to make him feel better.  He doesn't seem to be in a whole lot of discomfort yet from the molars, but the kid's pain tolerance is through the roof so sometimes it's hard to tell. 

Oh, and did I mention that he's growing like a week at the same time?  When he stands with my help his head is up to my waist! 

~Jess

In Which It Rains And We Plan A Care Package For Ellen

Connor and I spent a few hours running errands today, but it took us forever because it was raining so hard outside.  Really, I think it's completely unfair that we're still getting this sort of weather in May-- the only reason I'm okay with it is it means I don't have to water the yard.

Otherwise things were fairly quiet; we sat at a coffee shop for a little while, ran by our adoption agency to drop off some paperwork, and did a bit of house cleaning.  Nothing exciting, but quite honestly I wasn't really disappointed by that.  We've had more than enough excitement to last us for the next few months, thank you very much. 

We're probably sending off a care package to Ellen this week, so Jer and I spent some time trying to figure out exactly what should go in it.  So far we're going to put in an English-Thai picture dictionary, some swim goggles and a swim hat, but we haven't figured out what else should go in there.  It's too early in the process for us to send her a photo album-- that will come later.  We're not sure how much space she has to store things, so we don't want to send her bulky items or things that will take up a lot of room.  Maybe we'll add in some small things she can pass out to her friends.  I think the kids get a lot of candy from various visitors who come to the orphanage, so we'll probably try to avoid that.  We're probably going to send her one every couple of months, so we don't want to put too much in at one time. 

We have to think very carefully about what to put in her packages-- we don't know her clothing or shoe size, we can't send things that are too expensive and might be stolen or get her in trouble with the other kids, and we shouldn't send anything that requires batteries.  Thai girls are required to all wear their hair the same way for school, so pretty hair clips or barrettes are out.  We've already sent her some school supplies and a necklace. 

Figuring out what is appropriate and might pique her interest is surprisingly hard!

~Jess

In Which The World Moves Too Quickly

Connor had his first loose tooth this afternoon. 

For some reason this hit me hard.  I think it's easy for me to think of Connor as younger than he really is because he doesn't develop at the same pace as most kids his age.  He's much smaller than them for one thing; more the size of a three or four year old.  And he changes very slowly.  But in this one little way he's right on track, and I can't deny the fact that he's really not a baby or even a toddler any more.  He's growing up. 

So I called my mother to let her know, and learned that my Aunt Pat passed away today.

Aunt Pat was the oldest of my mother's siblings; she was born in 1935 towards the end of the Great Depression.  Her health had been poor for some time, but her death was unexpected.  In recent years when we would chat, she and I would commiserate about how awkward it was to haul around oxygen tanks and about the difficulty of finding handicapped spaces on busy days at the grocery store.  I never heard her complain about how she was feeling, though-- she always claimed she was "getting on all right." 

A tiny woman, she always teased me about how tall I was, and whenever she'd see me and my cousin Merritt together she'd call us "a couple of string beans."  Because we lived so far from each other, I only saw her every few years-- the last time at my sister's wedding in 2009-- but we spoke over the phone much more often.  She liked to call me her "darlin' girl," and she always had a smile for me and a question about how "little Connor" was getting on.

For the second time today I was taken aback by how time marches on whether or not one is paying attention to it.  Aunt Pat was a remarkable woman.  And she was solid, dependable.  She was always there when I needed her, a phone call away, ready with a kind word and an open heart.  A world without her seems hard to fathom.  I wish I could have called to tell her about Connor's loose tooth, and about how he's growing up too quickly.  I'm not sure what she would have said, but I'm sure it would have made me laugh. 

Here's to you, Aunt Pat.  May the road rise to meet you.

~Jess

   

In Which Connor Is Better And Loki Is Insane

Connor was feeling much better today!

I listened to his chest this morning and while he still has a cough it doesn't sound like it's made it's way into his lungs.  He had a whole lot more energy this morning, and since he doesn't have a runny nose and hasn't been running a fever for a few days I think I might try sending him back to school tomorrow!  We'll stop by the nurse's office when we get there in the morning and make sure he's got the all-clear from her, but I don't think he's contagious anymore. 

I spent the day doing chores around the house and watching the cats go absolutely nuts.  There's another cat in the neighborhood who likes to hang out in our backyard, and Loki believes that he must guard our house by making sure he can see that cat at all times.  So when the cat paid us a visit today Loki tore from window to window, slamming his face into the glass in his haste to get to the window and make sure that Enemy Stranger Cat wasn't doing anything suspicious.  Once he pinpointed Enemy Stranger Cat's location, he would then stare very, very hard at the cat in an attempt to stun the cat with the invisible laser beams coming from his eyes.  Unfortunately the cat appeared to have built-in eye-laser-beam protection, because he paid absolutely no attention to Loki at all.  This made Loki even more determined to get this cat's attention, and at one point he was actually quivering from head to toe, he was so excited.

When the cat finally disappeared, Loki's adrenaline rush was still going strong but now he'd lost his focus.  If you have ever seen the unstoppable force of nature that is Loki on what we refer to as a "terror," you would know that this was not a good thing.

So of course he spent quite a bit of time chasing cricket from one corner of the house to another, thus riling her up as well, and then he spent the rest of the time running pell-mell over our furniture and skidding around corners after invisible gerbils (he did such an accurate impression of his "gerbil under the couch alert" that I went and checked their cage just to make sure they were both in there).  He also started stalking me as I walked around the house, running up at random times and springing five feet up in the air in front of me before dashing off in the opposite direction.  It's like living with a predatory, spring-loaded Energizer Bunny. 

At least he's doing it now and not at two in the morning.  Crazy cat.

~Jess

In Which I Wish You A Happy Mother's Day!

Happy Mother's Day, everyone!

I hope you all had a good one; mine was great!  Connor seemed to be feeling much better today, though I'll be calling and making him an appointment first thing tomorrow to get his cough checked out.  Jeremy let me sleep in and brought me breakfast!  And "Connor" gave me some truffles too.  I thanked "Connor" (i.e. Jeremy) for them and have been enjoying them thoroughly. 

I spent most of today alternating between keeping Connor occupied and trying to catch up on sleep; it's been in short supply here lately between my roller derby events and the little guy needing Tylenol every four hours around the clock.  Today's the first day we were able to stop the Tylenol, and he did beautifully-- no seizures! 

Now if we can just get this cough licked we'll be golden.

~Jess

In Which It Is Very Late

It's currently about two in the morning and I just got home from a roller derby promo-- I had three today-- so I'm about ready to hit the sack.  The only reason I made it this long is because I consumed way too many Shirley Temples than was probably good for me and so I've been on a sugar high for most of the evening.  Gotta watch out for that grenadine-- it'll get you every time.

I am one wild and crazy chick.

Anyway, I've been told that Connor slept most of the day, which hopefully means that he'll be on the mend soon.  He didn't have any seizures again today, so I'm assuming he's over the worst of it.  The one thing I'm still really worried about is his cough, which seems to be moving into his chest.  I may end up taking him into the doctor's office this week just to get him checked out if this continues. 

There I am all dolled up earlier today for my promos: complete with red gel and "hair feathers," which are apparently the latest thing.  When the stylist asked me if I wanted feathers, I assumed she meant that she had a hair clip or something and I said sure.  She opened up a drawer and pulled out a pair of pliers.  Turns out they're feather hair extensions; since I'm not exactly up to date on fashion trends I had no idea.  At any rate I think they look kind of cool, though I don't know how they'll go with the stylish sweat pants and baggy t-shirt look I often sport. Oh well.

At any rate, like I said it's way past my bedtime, so I'll blog more tomorrow.  Good night!

~Jess

In Which Nothing Really Changes

Today was pretty much more of the same, only now we've added diarrhea to the mix.  You can imagine how thrilled this makes me.  Luckily he didn't throw up as much today, so it sort of balances out.  Sort of.  At least as far as the dehydration issue goes-- not as far as the mess.

He didn't have any seizures at all today though, which was a major improvement. 

I don't really have anything else to report; I spent most of today sitting with the little guy working on various sewing projects and listening to old episodes of This American Life. 

It wasn't terribly exciting.

~Jess

In Which Connor Is Still Very Sick But We Manage To Stay Home

Mom, Quit Taking My Picture-- I'm Trying To Watch Swiss Family Robinson

Well, we're not in the hospital, which I'm very thankful for.

Connor had only two seizures today so we got to stay home.  I think it was a combination of his fever remaining at a stable level (it stayed around 101 all day today) and me being super vigilant about giving him Tylenol every four hours around the clock.  I'm really glad that we've been able to keep him here instead of having to take him in, though we won't hesitate to do so if we feel like he's taking a turn for the worse.

Though he still doesn't have a stuffy nose he's developed a nasty sounding throaty cough and he was still throwing up quite a bit.  His lips are pretty chapped, but I had him on a slow feed through his g-tube all day and he kept enough down to keep from being dehydrated.  He spent most of the day on the couch with me, watching Swiss Family Robinson and looking completely miserable.  Even the ostrich race didn't make him smile, and normally he thinks that the ostrich race is hilarious.

I hope he feels better soon.

I'm trying to get to bed early tonight; I'm looking at the third night in a row of getting up every four hours to give him Tylenol and all of the interrupted sleep is really starting to take its toll. 

Looks like we'll probably be up to more of the same tomorrow.

~Jess

In Which Connor Is Very Sick

I hate to say it, but if tomorrow isn't a drastic improvement over today I'm pretty sure we're heading in to the hospital. 

Again.  Apparently we're aiming for about once a month right now.

Today was seriously not a good day in Connor Land, though.  He spent pretty much the whole day drifting in and out of sleep and periodically waking up to cough, throw up, have a seizure, or break out in chills.  He was also running a fever despite the Tylenol.  This is either the flu or it's some other bug doing a remarkably good impression of the flu.  At any rate, the little guy had eight seizures today while on Ativan and I had to do mouth-to-mouth on him three times. 

Which means, by the way, that I am more than likely now infected with whatever Martian Death Flu bug Connor has managed to pick up.  And if his flu shot didn't help him out with it, mine probably isn't going to be any more effective.  I can't wait; it looks like so much fun.

Anyway, if it looks like he's going to have a similar day tomorrow we'll be hauling him in.  The only reason we didn't take him in today was that the seizures finally started tapering off in the evening.  I'm not so much concerned about the flu itself-- and if that is what he's got there's not really anything they can do about it anyway-- but I am concerned about the number of seizures he's having despite being on his emergency seizure med.  The average case of flu lasts between four to ten days, and if he's going to continue to have that many seizures we need him in the hospital where they can give him more powerful doses of antiepileptic drugs. 

In the meantime I'll keep dosing him with Tylenol every four hours around the clock, we'll keep him on a constant feed to keep him from getting dehydrated, and we'll see what tomorrow brings.

~Jess

In Which Connor Is Sick Again

When I dropped Connor off at school today he seemed a little ornery, but I attributed that to the fact that he'd had a bad case of insomnia last night and gotten about five hours of sleep.  Other than being a little grumpy he seemed to be doing okay.

His teacher wheeled him out to me at the end of the day and told me that the first half had gone really well, but he'd just seemed kind of "off" for the second half of the day.  Oh, and he'd thrown up a little bit, so he was wearing new pants.  I figured once again it was due to the insomnia, and that after he'd had his quiet time he'd feel better.

He started coughing on the ride home.

As soon as I put him down for his quiet time, he fell asleep.  He slept fitfully on and off for two or three hours, waking up to cough every once in a while.  Then he started throwing up.  The chills started around three in the afternoon, and when I took his temperature he was running at 102.5.  I ran for the Tylenol, but he had his first seizure about fifteen minutes later, and then a second a little while later.

So much for insomnia.

I spent the rest of the day with a pale, shaky nauseous kid curled up on my chest.  I'm hoping this is just a nasty twenty-four hour bug, but it's looking suspiciously like the flu.  He had a flu shot earlier this winter, but it doesn't guard against all the strains of the stuff, of course.  So for now I'll be dosing him with Tylenol every four hours or so to keep his fever down, and it looks like we'll be curled up at home over the next few days.  I really wish the kid could manage more than a week without getting sick!  Lately it seems like he's just been going from one bug to another.

I hope he feels better soon!

~Jess

In Which Connor Waves Hello

Today I watched as Connor casually waved "hi" to several strangers when they said hello to him.  And when they asked him if he was having a good day, he nodded his head.  When they cooed over how cute he was, he smiled at them.  And when I told him it was time to go, he waved "bye bye" without prompting.   

This is the kid who as recently as two months ago told pretty much every single person who tried to spontaneously interact with him something along the lines of "No.  Don't like, go away."  When did he decide to not only actually tolerate people he doesn't know, but to be friendly and interact with them?  I'm staggered by how much he's changed in just the last few weeks.

This is a major development for him.  I think a lot of it has to do with the social interactions he gets at school.  Certainly he's more interested in other children now-- and not just to tell them "No!" if they try to play with his toys.  I think that part of it is not having little tiny seizures all the time; he's not missing out on a lot of social interactions with people and is able to respond appropriately because he can figure out what's going on.  Also he doesn't have to spend all his time and energy just keeping himself from being totally overwhelmed.  It makes me happy to see him interact with others on his own because I really would like him to have those meaningful human connections with people other than his family and his medical and education support teams.  Right now he's able to win people over just because he's so darn cute regardless of what he's saying and so he can be antisocial if he wants to, but what about when (God willing) he's twenty?  Cuteness only goes so far.

So this is a huge step towards independence for him-- just him being willing to interact with people makes the job of teaching him how to communicate so much easier on me.  Yay Connor!

~Jess

In Which I Take The Easy Way Out

I just got home from a late derby practice (where I bought new skates!) and I'm pretty tired, and also we didn't do a whole lot today.  So I'm taking the lazy way out today and showing you ridiculously cute pictures of Connor and Jeremy playing together out on our deck instead of writing an actual post.  Here you go:

Back to your regularly scheduled programing tomorrow!

~Jess