In Which We Go To The Beach, And Connor Teaches Me A Lesson

So in all the excitement about Gas Station Jesus yesterday, I forgot to tell you that Connor had a seizure that morning.  Only a thirty-second one and I didn't have to do mouth-to-mouth this time or anything, but still this is probably evidence that I have become way, waaaaay too jaded to this sort of thing, because telling you about cheap religious statuary took higher priority than telling you about my kid turning blue and not breathing.  This possibly makes me the worst mom ever.  Oh well.

So yeah, Connor had another seizure.  Lovely.  And we're waiting, once again, to hear back from the neurologist, though my guess is we probably won't change anything since we just upped his medication last week, and blah blah blah.  I don't have to tell any of you this, because you all know the drill by now as that was seizure number thirty-nine.  Connor needs to quit having these things, because I'm seriously tired of blogging about them.  Also I'm relatively sure stopping breathing thirty-nine times isn't very good for your health, though doing it in public is a great way to meet random people and see whether or not you want to be friends with them.  (Hint: the ones screaming "OH MY GOD A DEAD BABY!!!"  and shouldering others out of the way to get a better angle while taking pictures with their cellphones are probably the people you want to avoid inviting out to lunch, unless you happen to carry arsenic in your purse and want to try it out on somebody.  Believe me; I've been tempted.)

Um, anyway, so today we didn't have any seizures, though we did get some interesting looks from various bystanders.  But I'm getting ahead of myself. 

In keeping with the spirit of our ocean theme this week in my ongoing plan to force Connor to touch as many horrible things as possible, we went to the beach.  Specifically, we went to Alki beach, which is one of the few beaches in the area that has a wheelchair accessible walkway bordering it.  Unfortunately, said walkway is up about thirty feet from the shore-- at least at low tide, anyway-- and there's no paved sidewalk to get down to the beach, which was where all the horrible things I wanted to torture Connor with were.  I can't just pick the kid up and haul him down there, because he's got so much medical equipment at this point that there's no way I can slog through a bunch of sand dunes with all of that stuff loaded on my back and a thirty-something pound kid who won't hold on to me leaning all his weight backwards off my hip. 

But we had to press on, in the name of Science!  Or something.  So what did we do?

Connor's wheelchair looks a heck of a lot like a high-end stroller-- enough like one that whenever we go to the airport they try to make me put it up on the conveyor belt and I have to argue with them for a few minutes before they'll believe that it doesn't come apart in enough pieces to fit up there.  The wheels on this thing are not exactly built for sand dunes.  Imagine the scene, if you can.  You're a sunbather on the beach, lying out on your towel and soaking up some rays.  All of the sudden, into your view comes this woman, her shoes in one hand, grunting and digging in her heels and muttering words probably not appropriate for public use.  She's straining to pull an expensive-looking stroller backwards across the sand dunes while a kid who's obviously more than big enough to walk is happily bouncing along in the seat.  What do you think?

Judging from the looks I was getting from the sunbathers, you think I'm totally insane.  And you'd probably be right, but that's beside the point.  Anyway, I hauled that wheelchair all the way down to the first set of driftwood logs, took off Connor's shoes, and plunked him down in the sand.  Rather predictably, he spent the first few seconds acting like I'd just immersed him in a tank full of piranhas, but after a minute or so I buried his feet, which actually calmed him down-- probably because the weight of the sand offered some deep pressure.  I sat there with him and took the opportunity to pull out the camera while I caught my breath and did my best not to steam about all the looks I was getting from the people around me, none of whom made the slightest attempt to help me get Connor down there despite the obvious trouble I was having and several of whom (mostly teenagers) were audibly laughing. 

And then the magic happened. 

Connor reached down without prompting, and began stroking the sand.  This is the child who reacts to anything touching his palms like it burns him.  I couldn't believe what I was seeing.  Then, wonder upon wonders, he actually dug his hand down, grabbed a fistful of sand, brought it up to his face and looked at it carefully for a minute before opening his palm and dumping it out.  That was the first time he had voluntarily reached down and picked up a fistful of anything other than the cloths we use to wipe his face.  Ever.

So you're this sunbather, and you roll over to your side again, and lo and behold that woman is still there and is now kneeling down in the sand clutching her son to her chest, laughing uncontrollably.  Also, for some reason, she's crying.  And you stare, and smirk, and still think she's crazy.

But she doesn't care anymore.

~Jess

In Which I Have An Interesting Roadside Encounter

So today I was driving around aimlessly in Renton looking for a notary so that I could get one of our eight bazillion (I got my degree in English, so I'm allowed to use imaginary words) pieces of paperwork for the adoption stamped, and of course I'd set out with this idea that since Renton wasn't that big a town, surely I could find one by wandering around until I stumbled upon a Kinko's or UPS or something.  Not surprisingly, this wasn't working out so well. 

Since it was a relatively nice day, all of the gas stations in the area had stands set up in the parking lots selling various things-- mostly seasonal fruit and rugs of dubious quality.  I kept passing these things every other block or so, and I wasn't paying too much attention to them since none of the stands seemed to be equipped with handy notaries.  At any rate I was well past the downtown and on my way to Seattle when I saw it-- a nondescript gas station with a red roof and a stand outside.  I must have slowed down to half the speed limit just to savor the feeling of incredulous disbelief.

They were selling Jesus.

Really-- instead of cherries or rugs or shoddy knock-off purses, they were selling three foot high resin statues of Our Lord and Savior decked out in various improbable, though festive (did they make fluorescent lime-green dye back then?) colors of robes.  The occasional Mary or St. Francis was thrown in for variety, but mostly it was All Jesus, All the Time.  Whoever cast the original mold had obviously been going for the traditional "Jesus Teaching" pose but had ended up instead with the rather offbeat Maneki Neko pose.  Also Jesus' nose appeared to have gone on a pilgrimage and was currently hanging out under His left eye, giving Him a sort of Picasso-like feel.

I swear I couldn't make this stuff up if I tried.

So the question I have is, who the heck buys Gas Station Jesus?  And if you did decide to buy said extremely inexpensive knockoff statue of the Son of God, where would He then ride in your car if all of the seats were full?  I mean, you couldn't exactly throw Him in the trunk-- it would seem rather irreverent.  The same goes for riding on the floorboards.  Perhaps you could strap him to the roof and he could bestow his benevolence on your fellow commuters, or at least prevent them from tailgating.  I would imagine the possibility of having a three-foot high resin statue of the Son of God hurtling through your windshield at 60 miles an hour would probably have that effect.

At any rate, I finally found a notary after a very patient friend painstakingly walked me through some extremely convoluted directions that involved a street which changed its name four times and other such shenanigans, and we headed back home.  Though it was hard, I managed to restrain myself from driving back by that station and picking up a Gas Station Jesus of my very own.  Not only did I not have any place to put Him, but my cat Loki already attempts to eat our much smaller baby Jesus every year when we get out the nativity set, and I just know that bringing home one that size would trigger a horrific and messy tragedy that would not only be borderline sacrilegious given my prior knowledge of the likely results, but would also end in me cleaning out fluorescent lime-green cat poop for two weeks. 

And who wants to do that?

~Jess

In Which I Implement Theme Days In An Attempt To Make Connor Hate Everything

I had a great play-day today!

Joanna came over around 11:00 in the morning, and off I went!  First I went over to the Puyallup library.  I've decided to start doing some "theme weeks" with Connor so he'll keep learning over the summer, and the library has these wonderful themed activity boxes available for checkout.  They contain puppets, props, activity guides, and of course, books-- all centered around one particular theme.  I chose "Ocean" for this week, and have all sorts of fun stuff planned for Connor!  We're going to take a field trip to an aquarium and a beach, I'm going to do fish prints and a water/sand table with him, we're going to dig for shells-- all sorts of wonderful sensory activities.  So from Connor's point of view, basically I'm going to make him touch a whole bunch of horrible ocean-related stuff, thus ensuring that he will hate the ocean forever.  Then next week I'm going to make him hate farm animals! 

I'm such a nice mom.

Anyway, after the library trip I met up with a friend for lunch, and we went thrift store shopping.  I ended up buying a really cute clutch and some crafting supplies.  After that I went to (surprise!) a bookstore and a coffee shop.  I picked up some tasty sushi for dinner on the way home.

All-in-all, it was a great day!

~Jess

In Which We Help Friends Move, And I Traumatize Their Neighbors, And Also Our Deck Looks Awesome

We had a busy day today!

Jake got here about nine this morning and we worked on the deck together for a couple of hours.  I got to use the circular saw again, and I didn't cut my fingers off or anything!  Then Jeremy and I left Connor with his respite care worker, Joanna, and headed up to Seattle to help some friends of ours move.  They bought a beautiful craftsman style home with, among other amazing features, an actual Hobbit door!  Even if the rest of the house wasn't totally cool, that would clinch it. 

Rowbert, our wheelchair van, is terribly handy for moving, by the way, because not only does he have a whole bunch of room inside and reinforced shocks, but he also has that nifty ramp so you can simply slide heavy boxes up into his interior or, if you have a piano mover, roll them inside.  He makes things super easy.

So we spent a few hours helping our friends move.  In my case this involved, at one point, strutting down their street dressed in a leather tunic (originally part of an orc costume) and touting a seven-foot long spear. 

Don't ask.

When we got back to the house around five, we discovered Jake had finished just about all of the framing for the deck!  Doesn't it look awesome?  We have yet to frame out the ramps, as we have to pour some concrete pads first to make sure they have a really solid base, but we're getting there!  To give you an idea of what you are looking at-- the basic "rectangle" of the deck is 15' by 24', with an additional 4' by 8' landing.  One of the ramps will run down the front of the deck off that landing on the right-- from this view we'd be looking up that ramp.  The other ramp will run down the side of the house.  Hopefully it will blend pretty well with the rest of the landscaping-- we'll just have to see!

~Jess

In Which I Get A New Cell Phone And Use It For Nefarious Purposes

Jake and I worked on the deck again this morning while Connor and Jeremy hung out together.  We got the sill plate on today and some of the jousts, so it's coming along!  I'll post a picture of the progress we made this weekend tomorrow so you can see where we are.  As we move further along on the framing, it's easier to visualize what the deck will look like when it's finished.  It's really neat to see something that I drew out on paper take shape on our house!  Hopefully it'll look as good as I imagined.

I've been playing around with my new cell phone this week.  My poor, much-abused ex-cell phone finally bit the dust, and since it's absolutely essential that I have a cell phone because of Connor's seizures, we set out to get a new one that was as indestructible as possible.  This is important because I tend to do things like toss my cell out of canoes, accidentally throw it across the parking lot (hey-- I'd just put on hand lotion, okay?), and other lovely destructive things.

The model I ended up with is touted as having "rugged military design," and the salesman assured me that I could throw it against the wall without it being a problem.  This phone is a Very Serious phone.  It spends a lot of time working out, and didn't do very well in school.  It looks like I could beat people with it.  Mostly I plan to just use it to place phone calls, though.

I also got one of those little wireless earpieces for it, purportedly so that I can talk on my cell phone in the car, but actually so that I can walk around and mess with people.

Basically my plan is to use it as a prop to walk around, say, the mall and hold one-sided conversations on bizarre topics.  No one will actually be on the other end of the line, of course, but it's impossible to tell with those things so it should work out just fine.  I will stage messy breakups with my imaginary boyfriend because he does not know the difference between "your" and "you're" and bought me a nose hair remover for my birthday.  I will order extremely weird things from mail-order companies.  I will tell stories that involve a lot of animal noises.  I will do my very best to hold these conversations around people who are actually having private conversations on their cell phones in public areas-- especially if they are in the bathroom.  I will also make sure to take the stall next to them and flush the toilet multiple times.

This idea was inspired by a woman in the checkout line in front of me at one of our local stores who was screaming at her boyfriend Roger (and by proxy, me, the checker, the bagger, the three other customers in line and a number of passing people) for choosing a career (before he met her, mind you) that would cause him to travel out of the country and thus away from her, and if he got on that plane to England they were Over, with a capital 'O,' and Frank still wanted to take her back so he better make his choice quickly because she wasn't going to wait around for him and there were plenty of men out there who would snap her up in a second.  By the time she was finished paying and stomped out of the store, I (along with probably the rest of the captive listeners) was really hoping Roger would get on the plane. 

If I'd had my little wireless earpiece with me, I could totally have drowned her out with moose calls.  Or at least told my imaginary caller that I would get back in touch with them because I was standing in line and didn't want to be rude by talking on my phone while checking out. 

The joys of technology!

~Jess

In Which We Pose For The Camera, And Receive Some Wonderful News

You might recall that a while back we won a photo shoot from Persimmon Images, and did an extremely fun (if wet) session with them at the Olympic Sculpture Park in Seattle.  We had the second half of our photo shoot with the always lovely Kat and Justin today, and all of us had a blast!  Happily we were not rained on this time-- and the sun even peeked out a little bit from behind the clouds, so that was great.  We've become friends with Kat and Justin over the past few months as they happen to be not only very talented photographers but also pretty awesome people, and so it was really great to get the chance to hang out with them.  Knowing we'll get some fantastic pictures out of it is an added bonus!

This time we met in Tacoma and posed outside the Glass Museum for a while.  It was fairly uncrowded, though we did see one other photographer photographing a gorgeous couple in what was probably an engagement session.  Connor behaved just beautifully-- not just for the photo shoot, but all through dinner afterwards as well.  He didn't even tell Kat to "go away" this time; which makes the session a big success in my book! 

And to top it all off, we got our home study rough draft back today.  Our approval is contingent on our background check from Texas coming back clear, but otherwise we're approved to adopt a child from Thailand of either gender who has physical/medical special needs and is up to eight years old!  This is fantastic news because it puts us one step closer to adopting Sylvie.  The home study is fairly general so that if for some reason we are not able to adopt Sylvie (because another family adopts her first, she transfers to a different orphanage and the adoption agency is unable to locate her, etc) then we'll be able to adopt another child who falls within those parameters.  But hopefully it won't be an issue, and we'll be able to move forward on bringing her home!

All in all it was a pretty perfect day!

~Jess

In Which I Have No Idea What My Job Title Is

Connor and I had a relatively low-key day today, though we did end up spending a good portion of the morning touring various pharmacies in search of one with his seizure medications in stock.  The pharmacy we originally had it called into didn't have any in stock, and they transferred the prescription at our request to another pharmacy across town who supposedly had it.  Turns out when we got there that they'd transferred the wrong prescription, so we ended up having both prescriptions transferred to a third pharmacy in a town near us, which is where we actually got them filled.  Because of the recent changes to Connor's medication we were quickly getting low on our current stock, and Connor's seizure meds are not something I want to run out of.  But I finally came home with that paper bag in hand, so the crisis has been averted.

At one of the pharmacies, while sitting and waiting, I made small talk with a woman about my age, dressed in a business suit and on her lunch break.  We were having a relatively nice conversation, until she asked me "So what do you do?"  As usual I had absolutely no idea how to answer her.  Writer? Totally pretentious and more of a hobby.  "Caretaker?" Sounds less like I'm a mom and more like I actually get paid to take care of Connor.  House Wife?  Sounds like I vacuum the house in high heels and pearls.  Stay-At-Home Mother? Accurate, but woefully inadequate.

Take today.  Since I spent four hours running around town, I'm now behind on my to-do list as far as Connor's care goes.  Tomorrow I need to fax or drive in a copy of Connor's IEP to his therapy center's office, make a follow-up call to the audiology department, place the order for next month's g-tube supplies, check a referral with our insurance company and schedule appointments with two of the little guy's specialists. 

This is why I don't work-- because managing Connor's care entails way, way more than just feeding him and playing with him and cleaning him and driving him around to various appointments.  And I have no idea how to cram everything that I do in a day into a job title.

How do you all answer this question? 

~Jess

In Which Connor Goes Shopping, And Makes Sure Mommy Doesn't Get Lost

Connor managed to lose one of his hearing aid earmolds last week.

He did this by waiting until we were out in the parking lot after his therapy session, and then quickly popping the hearing aid apart while my back was turned away as I deployed the ramp.  Then he dropped the earmold onto the asphalt, where it remained when I wheeled him into the car.  So he's down an earmold, and since absolutely refuses to wear just one hearing aid (he also does this with socks) he's sans hearing aids until the audiologist can squeeze him in.

So he's having kind of a hard time right now.  Whenever we go somewhere crowded and noisy, like the mall, normally if I stop pushing his wheelchair because I want to look at something I'll talk to him while I'm browsing, and because he can hear me he knows I'm there.  Well, we went shopping at the mall today, and since I am a creature of habit I did what I always do, forgetting that he couldn't hear me.

Connor came to the conclusion, whenever I stopped the wheelchair and was standing behind it for more than about three minutes, that I had either abandoned him or gotten lost.  He decided the easiest way to locate me was by echolocation.  So he'd begin emitting glass-shattering, blood-curdling screams, which no doubt really added pizazz to everyone's shopping experience.  Goodness knows they livened up mine.

Towards the end of the day he got tired and was more quick to assume that I'd left him.  As in, the second I stopped the wheelchair.  This worked out well in check-out lines; I either had to stand in front of him and pull the wheelchair every twenty seconds or so, or I had to slowly weave back and forth or circle in line.

I can't wait until we have his new earmolds.

~Jess

In Which Connor And I Take A Field Trip

This morning Connor and I headed up to the Pacific Science Center.

I've been trying to come up with a lot of field trips that we can take during the summer to give him the sensory stimulation of people, noise etc that he would be getting at school but I can't offer him in our extremely quiet house.  So I thought the Pacific Science Center would be a good place to find some of that-- and on a weekday with fewer people there it wouldn't be too overwhelming.

He had a great time!

His favorite exhibits were probably "Tropical Butterfly House" and "Dinosaurs: A Journey Through Time"  (because those two have so much in common).  He was rather underwhelmed by the "Body Works" and "Science Playground," and also with the animal exhibits (with the notable exception of the naked mole rat exhibit, which he flipped out over as Naked Mole Rat Gets Dressed is one of his favorite books of all time).  And he downright disliked the "Circus: Science Under The Big Top" and the "Puget Sound Model and Saltwater Tide Pool" exhibits; especially when I forced him to play dress up and made him stick his hands in the water activity table.  Horrors.

But overall I think he had a pretty good time, and the outing certainly served its purpose; to expose him to new things without completely overwhelming him to the point of meltdown.  Or at least, to delay the meltdown until bedtime, which is what happened.

Of course the meltdown might also partially have been due to Connor's medication change; the neurologist upped Connor's Trileptal again in response to the seizure (with paralysis for extra drama!) the little guy had on Father's Day.  Connor tends to get a little crabby whenever we change his med levels.  At any rate, we had a pretty good time, and I'm already cooking up plans for a fun outing tomorrow.

I'm sure we'll have a blast!

~Jess

In Which Connor Plays Hard

Since Connor went to bed so early yesterday due to his seizure, he decided to wake up at 5:30 this morning, ready to play. 

I was thrilled.

I decided to thoroughly wear him out today so hopefully I could avoid a repetition of this.  So he spent some quality time on his tricycle, and then some time on his rocking horse, and then some stander time.  After that we did some jumping, and then we just ran around the house playing "Superman" and chasing the cats for a while.  Then I put him down on our bed for some "tummy time," which caused him to immediately burst into tears.  Despite its quick end, apparently "tummy time" after all of the fun stuff was some sort of horrible betrayal, and it prompted tears off and on for the next couple of hours as he reminded me of just how horrible it was and what a terrible, mean person I am (Mommy NO!  Connor SAD!  WANT DADDY!).  He finally calmed down and went to sleep (an hour late-- so much for my wear-him-out idea) after copious amounts of snuggling and reassurance on my part.

Okay, so I might have pushed him a little hard.  But the tummy time was probably just a trigger; he's been a tad bit off-kilter ever since school got out, so I've been seeing these sorts of outbursts a lot more often.  Our son is nothing if not a creature of habit, and I can tell that he really misses school and the predictability of his routine.  So I think it's probably about time we start adding activities back in for him so that he has a better idea of what's going on each day.  Vacation time is over. 

So much for sleeping in!

~Jess

P.S.  No word from neurology yet-- I'll let you all know.

In Which We Have A Not So Great Father's Day

So today, as you no doubt all already know, was Father's Day.  Connor got his daddy two presents: a scone pan and a three-minute long seizure. 

One gift was slightly more well-received than the other.

The day started off well enough; after a leisurely brunch we headed down to the Meeker Days Festival, where we sat in a parking lot for a while waiting for the ran to let up and listening to The Vinyl Cafe on the radio.  When it became obvious that the nasty weather wasn't going to change any time soon, we decided that we'd rather spend the day somewhere dry.  So we drove up to a mall we hadn't explored and spent some quality time walking around together and browsing.

We stopped by a gourmet food/kitchen shop, where Connor helped pick out the first of his daddy's presents.  Then we looked at several different shoe stores for a good pair of Chuck Taylors or something similar for Jeremy.  Jer's gotten to the point where his feet are flexible enough that his tennis shoes aren't "challenging" him any more, so he wanted a good pair of fairly low-to-the-ground shoes that would help him continue to stretch out his feet and add to his flexibility.  We found a good pair at the third shoe store, and then decided to go find a late afternoon snack. 

Jeremy decided he wanted "breakfast for, um, snack" and so we drove to a local pancake joint, which is where Connor delivered his second, surprise gift of the day.  When I turned around in the front seat to grab my purse, I saw that Connor had a completely blank expression on his face and his head was down on his chest; a sure sign that he was having a seizure.  A quick hard rub to the bottom of his left foot (the place he is most sensitive to and defensive of) that garnered no reaction confirmed it.  We laid him down on the back seat of the van, started the timer, and hooked him up to oxygen.  His right leg started jerking rhythmically shortly thereafter.

He only stopped breathing for about ten seconds this time, thankfully, so that wasn't so bad.  What was a little more disturbing is that for about two minutes after the seizure was obviously over (he was breathing, making facial expressions, tracking with his eyes, etc) his whole left side from the neck down remained completely non-functional.  He could squeeze my hand with his right hand, and he'd jerk his right foot away from a tickle, but the left hand and foot were dead weight and didn't respond at all, and he showed no indication in facial expressions that he was even feeling me moving or tickling them.  This is new, and was more than a little disturbing at the time, though I've since done my homework and, while I'll wait for a neurologist to confirm it, suspect that what we saw was something called Todd's Paralysis, in which case it's not that worrying.  That's not to say I didn't totally freak out at the time, and we'll make darn sure the doctor knows about it.

Needless to say, we didn't eat any pancakes. 

We spent the rest of the evening quietly at home.  Connor spent most of it either napping or clinging like a limpet to me; I actually let him watch an entire movie as a special treat (Mulan-- his favorite).  We went 22 days without one and I was finally starting to relax a bit again; guess it's back to the drawing board.

Hope everyone else's Father's Day was slightly better!

~Jess

In Which I Am Very Very Very Very Tired

My Hopeful Parents article for the month is up over here.

Connor did not have a lot of fun last night, I'm afraid.

He spent a good portion of it crying and throwing up; it was probably the worst night he's had in over a year.  He and I both didn't get more than about five hours of consecutive sleep.  While we're not sure exactly what made him so uncomfortable he seemed to be having some tummy cramps, so we speculated that something he ate didn't agree with him.  At any rate, he apparently slept in until about ten this morning, when Joanna finally dragged his unwilling little self out of bed.  I wasn't there to witness it, because Jeremy and I left at 8:00 for an adoption training seminar.  No sleeping in for me, dang it.

Oh well.  He seems to be having a much better night thus far, so hopefully we'll both get some much-needed sleep! 

I probably could have taken a nap after we got back from our seminar, but I don't really nap very well.  If I'm not able to sleep for at least four hours I wake up even groggier and more tired than I was before.  So instead of going to sleep, I helped Jake dig out and level the rest of the area the new deck is going to be in.  We also set the first beams in position, as you can see-- these are basically the main supports for the underside of the deck that the jousts will run across.  The second support is sitting in what used to be a raised flower bed, so you can imagine the size of our dirt pile right now!  Next week we should be getting the rest of the corner pylons set and the framework laid out; things are moving right along!  I got to use the sledge hammer and also a nail gun today, which might not have been the best of ideas in my slightly delirious state, but I managed without serious bodily injury.

If I was looking around for a job right now, that would definitely go in my resume because with my hand-eye coordination it's a pretty major achievement.  You know, probably under the "what are your strengths" question that so many of those applications ask.  Something like "Hasn't Managed To Put Anyone's Eye Out With A Power Tool Yet" would probably work.

~Jess
 

In Which We Have Our Home Study, And Connor Rocks Out

So I think the home study went fairly well.

And by that I mean that I have absolutely no idea how it went, other than the fact that we managed to not set the social worker on fire or anything, and she did not run screaming from our house, so it probably wasn't a total disaster.  Never fear, though-- I will probably have convinced myself that she completely hated us by the time we get the actual home study report back, because I am fun like that. 

She took a look around our house, and then we sat down and went over the gigantic packet of information we'd sent in about our lives, and she asked us a bunch of questions and wrote notes down on her notepad about what we said.  Unfortunately none of the questions were multiple choice, which probably would have been waaaaaay easier.  But at any rate, I think we did okay; the social worker seemed very nice, but she was a little hard to read.  We'll find out in a few weeks whether or not we convinced her we're not total psychopaths when she sends us a rough draft of the home study. 

Connor spent the morning hanging out with Joanna while we conducted our interview, and then we spent a relatively quiet evening at home, with the exception of a rather exciting development.  Connor's been a big fan of his rocking horse for a while, but he hasn't been able to really make it go on his own.  Well, today he finally got it!  Check out the awesome video, in which he very slowly and carefully rocks waaaay back and then waaaay forward. 



I crack up in the middle, by the way, because while you can't really hear it on the video apparently exercising his abs like that makes Connor emit extremely loud, rapid-fire toots.  Hey-- he's working hard!  At any rate, this is the first movement-related activity that Connor has ever been able to do completely on his own, so it's pretty exciting! 

We'll see how he does on the real horse in a few weeks!

~Jess

In Which We Prepare For Our Home Study And I Am Really, Really Nervous

I spent a good portion of today weeding the yard and cleaning house, because we have our home study tomorrow.  To be honest, I'm totally freaked out about it.  Despite the fact that we've already met our social worker and she seems like a lovely, very non-intimidating, rational person, I am still half-convinced that she's going to sit down with us, do the interview, and declare that there is absolutely no way we are fit to parent another child, and also that she's iffy on our ability to parent the one we have.  Likely?  Probably not.  But that doesn't stop my brain from thinking it anyway, because brains are wonderful like that.

I'm also worried that she's going to take a look at our backyard (which is totally torn up due to the deck construction) garage (which is full of deck materials) and front yard (which is half-full of ivy and weeds) and disprove us on the grounds of our house being unsafe for children.  But there's not really anything I can do about it, as I am not going to be able to build the deck, organize the garage and pull up 60 feet of ivy in the next 24 hours, so we'll just have to hope that it's not a big deal. 

And then there's the thought that I'll say something completely inappropriate and horribly offend her, or that Connor will decide to have a major meltdown in the middle of the interview, or any number of other equally unlikely scenarios my mind has managed to come up with over the course of the day that make me want to consume possibly toxic amounts of chocolate.

If I can get my brain to stop spewing irrational ideas about how we're going to flunk this thing, hopefully I'll be able to get some sleep tonight.  But so much hinges on this dang home visit that I don't know how successful I'll be.

Wish us luck!

~Jess

In Which I Am Suddenly An Aunt, And Feel Very Old

I unexpectedly became an aunt this morning! 

Well, it wasn't completely unexpected.  We were just anticipating the baby's arrival about five weeks from now.  Unfortunately my sister-in-law developed some complications and the little guy had to be delivered by emergency c-section just over a month early.  However, both mom and baby are doing well, and we're hoping he'll be released from the step-down NICU soon.

So I'm officially an aunt now, which honestly kind of freaks me out, because my little brother is now a dad.  This makes me feel ancient.  I mean, it's bad enough that my son is now four, an age which I have memories of being.  I also remember my impression of my parents when I was that age.  They were ancient.  I mean, prehistoric.  Also they knew absolutely everything there was to know and were about 80 feet tall.  And that's me now, except that my parenting style contains less of knowing everything and much more of flying by the seat of my pants and having absolutely no clue what I'm doing. 

Oh, and did I mention I have somehow managed in the past year to acquire actual gray hair?  People still in their twenties are not supposed to have gray hair, saggy boobs or those little wrinkles at the corners of their eyes, all of which I now am sporting.  People in their twenties are supposed to be still waking up at ten after sleeping off their mojitos from the night before, which they spent clubbing in fabulous outfits with other stylish, young-looking people.  Okay, so I don't like mojitos.  Or clubbing.  Or wearing fabulous outfits, which tend to get drooled on around here.  But I feel totally jipped out of the waking-up-at-ten part, not to mention the part where I still have boobs that defy gravity.  What gives?

And now my little brother, who I remember toddling around in diapers and annoying the bejeezus out of me by making his plastic dinosaurs eat all of my dollhouse people, has a kid.  A super adorable kid, who I can already tell is going to take after his aunt in the looks and intelligence department, but a kid nonetheless.  This does not make me feel any younger. 

Oh well.  He's a beautiful little boy, and we're so happy he's here despite how ancient he makes me feel.  I can't wait for him to be old enough so that he and Connor can get into trouble together!

Even if I am totally old and decrepit by then.

~Jess

In Which Connor Has His Last Day of School, And Murders An Octopus

Today was Connor's last day of school.  Can you believe it?

It seems like just yesterday I was dropping him off at school for the first time.  I don't really remember it very well because it was a scant month after Jeremy got himself blown up, so I didn't have time to get all sentimental about it because I was too busy freaking out over the fact that we were going to have to buy a wheelchair van and move.  This is one of the things the blog is great for, because not only can I go back to read about what we did that day, but I can see the occasional picture too.  And wow, has Connor grown.  The kid is officially huge. 

He had his big party at school today where he got to say goodbye to all the kids who were graduating from preschool and moving on to other programs.  Connor will be in the same classroom with the same teacher and paraeducators next year, and six of the kids who were in his class this year, which is great!  The party was a lot of fun, unless you were an octopus, in which case it was a horrific massacre.  The kids all made octopi out of paper bags for the occasion, and the teachers stuffed them with paper and a few pieces of candy.  Then each child in turn got to hang his poor doomed octopus on a string suspended from the ceiling and then beat the daylights out of it with a plastic baseball bat, in a sort of individual aquatic-themed pinata bashing.  Some of the kids got really into it, too-- they had to hold a couple of them back so the teacher could get out of the way before the bat swinging started.  The poor octopi, despite attempted evasive swinging action, didn't have a chance and it was soon over; the bits of paper octopi that littered the ground afterwards testament to the carnage wreaked upon the hapless cephalopods. 

But the candy was pretty tasty, so that was okay.

We also got to watch a really well-done video and photo montage of all the kids, which contained no violence towards octopi at all but did involve some rather hilarious JibJab renderings of the children doing various silly things.  We also ate cookies and received a lot of hugs: two of my very favorite things in the whole world.  And finally it was time to go, so after one last round of hugs we took off.  So now Connor has a whole summer stretching out ahead of him. 

Who knows what mischief we'll get up to?

~Jess

In Which Connor is a Fashion Critic, And Growing Like a Weed

Connor got to wear the first shorts of the year today.  He wasn't quite sure what to make of them; I'm not sure he remembered wearing shorts from last year-- or maybe it was just that he has more vocabulary to ask questions now.  "Pants?" he kept signing.  "No pants?"  I think he was a little confused about going to school dressed in them; maybe he thought he was in pajamas.  Oh well; he got used to them pretty quickly once he figured out that making loud whining noises wasn't going to get him any pants, though periodically he would remind me that I was committing a violation of his personal dress code.  "Connor no pants.  Sad."

Yes, Connor.  Tragic.

He was much more enamored of his spiffy new tie-dye T-shirt, which he made with some help at school.  Isn't he adorable?  He loved the bright colors and he kept staring down at himself and looking at himself in the mirror.  Clearly he approved of the addition to his wardrobe, even if it doesn't have long sleeves.  Oh well; one can't have everything.

Who knows how long it will fit, though; the kid is growing like a weed!  At his neurology appointment on Friday (where they upped his medication again, by the way) he weighed in at 31.2 pounds; which puts him officially on the growth chart!  This is a first for him; he's never actually made it up to the chart before-- usually he's somewhere way below the bottom of the curve.  He is now in the 10th percentile for weight/age.  Awesome!  Unfortunately I didn't catch what his length was; I'll have to measure him tomorrow and see.  Our biggest concern is keeping him proportional; I could care less how small or large he is so long as he's an appropriate weight for his height.  I secretly hope he doesn't shoot up too quickly, though.  In some ways him being smaller would be a lot easier for us as he gets older because he'd be easier to carry, but we'll just have to see how he grows.  If he ends up being six feet tall than I won't have to go to the gym any more because I'll have my very own home workout.  I'll have arms of steel!

Grow Connor grow!

~Jess

In Which Nothing Much Happens

Today was another gorgeous day! 

We took our friends to the airport this morning and then settled in for a thoroughly lazy day.  Connor usually needs one of those after we have anyone visit, and Jer's feet weren't feeling so hot after all of that hiking he did yesterday.  I have no legitimate excuses for not doing anything today, but I figured I'd join them out of a sense of solidarity.  Ah, the sacrifices we make for family.

Since Jeremy was sticking close to home all day and didn't mind watching Connor, I had some free time.  I had a gift card for a local massage therapy place, and I decided that today would be the perfect day to use it.  So I went and had a two hour massage.  Bliss!

Then I came home and decided to play around with some clay.  I decided to try making something big with an armature, which I've never done before.  It was pretty interesting, and I ended up losing track of time.  I worked for a couple of hours and roughed out the skeleton of a dragon, um, chicken or something to play with later.  I am not by any means a sculptor. 

At any rate, I'll keep working on it and see where it goes!

~Jess

In Which We Finally See The Sun

It was such a beautiful day today! 

The sun was positively glorious-- so much so that I actually got a tad bit sunburned-- and for the first time this year it actually felt like we might be nearing summer.  It's been so gloomy and rainy recently that with such beautiful weather today everyone went a little bit crazy and spent the whole day outdoors.  Everywhere I went I saw people (and animals) just sitting out in the sun and soaking it in!

We had respite care today, which was nice for Connor because it meant a day spent mostly at home.  We've really kept him hopping the last few days, so I think he badly needed a break!  Jeremy went hiking with friends up the far side of Mount Rainier, and they had a lovely time.  Due to time constraints I wasn't able to go with them, so I was left with a rare afternoon to myself.  It doesn't happen very often, so it was a nice change-- particularly on such a gorgeous day as this one.

After eating a tasty brunch, I saw Jer and the rest of the gang off.  Then I headed across the street to the Puyallup Farmer's Market, which was in full swing.  I idly browsed for a while before finding the henna table, where a couple of very competent artists were creating beautiful designs on some very happy fairgoers.

Henna is great because you can have a fun tattoo done that only lasts for a couple of weeks.  I'm all about body art, but I prefer to play around with things that aren't permanent.  I used to have henna tattoos pretty often, but I hadn't done one in several years.  For one thing, I haven't had the time to sit down with an artist.  For another you usually have to keep the henna paste on for several hours to get a good stain, and there is no way I'd usually be able to get away with not picking Connor up or moving around a lot.  But since I had respite care and time to myself, I figured "why not?" and plonked myself down in a chair.  I got up a few minutes later with a beautiful Persian design of stylized flowers and leaves trailing down my left arm. 

Since I didn't want to do anything that might mess up my beautiful henna design, I wandered over to the library next and spent some time browsing the books.  Then it was off (of course) to a coffee shop, where I sat outside for a while (hence the sunburn) and read while drinking an iced tea.  Finally I hit the craft store to buy some art supplies and the pet store for more practical items, as the cats were nearly out of food.  Then it was time to head back to the house.  What a great outing!

Connor ended up being scared of the henna and refused to let me touch him with that arm.  Apparently he didn't recognize it as my limb and thought it was a Stranger Arm or something, or maybe he thought I had a giant sticker on my arm and I would infect him with Stickeritus if he allowed it to get too close.  At any rate he refused to let me pick him up with it and I had to wipe the henna off prematurely, which meant it didn't have a very dark stain.  Oh well.

Otherwise it was a great day!

~Jess

In Which We Have Another Insanely Busy Day But I Manage To Blog About It This Time

Today was, if possible, even more busy than yesterday.

Connor had a "Sports Day" at school today; they're having a bunch of really fun theme days right now because we're getting really close to the end of the year.  He was supposed to wear a sports-themed outfit.  The little guy has currently outgrown all of his Texas A&M gear (Jeremy and I met at A&M) so I put him in a shirt with a gorilla lifting a dumbbell on it instead. 

If Gorilla Powerlifting isn't a sport, it totally should be.

Anyway, Connor went down for a brief "quiet time" after school, which he spent happily experimenting with the upper ranges of his vocal volume, and then we were off to Seattle for a trip to Pike Place Market.  Because it was a sunny, gorgeous day today and a Friday to boot the market was packed, but we still ended up having a really good time.  We wandered for a couple of hours around munching on piroshkies and checking out all of the awesome vendors.  Then it was time to hop in the car again.  We dropped our friends off at an upscale shopping center near the hospital, and then Jeremy, Connor and I headed to a neurology appointment.

Our neurologist apologized multiple times for the big delay in treatment we had a few weeks ago-- a first for me.  I've never had a doctor apologize for anything, despite some major mistakes over the past few years, so that was pretty unexpected and awesome.  Then we got right down to business.  He went ahead and upped Connor's Keppra again, so hopefully we can stay ahead of the curve as far as the seizures go.  We also talked about possibly scheduling an MRI-- Connor hasn't had one in a while and because he's at risk for a number of things we've been told in the past to get one yearly.  We're kind of debating that right now though, because other than the seizures Connor seems to be doing really well, so if it's not necessary to put him under we'd rather not.  He's about due for another ABR (Auditory Brainstem Response) though, which he'll have to be sedated for, so we might just try to do both together since he'll have to be under for that anyway.

We're supposed to set up another appointment for three months out.  Overall I came out of the hospital feeling pretty good about the care we're getting.  Connor wasn't quite as happy as I was, as he'd already had about enough excitement for the day and then he had to have a blood draw to check his medication levels.  He was less than thrilled, to say the least.

Since by this point it was rush hour and I usually get Connor a book as a reward anyway when he has a doctor's appointment that involves bloodshed, we met up with our friends at the shopping area near the hospital and ate a leisurely dinner before spending some time browsing the gigantic Barnes and Noble in the area.  Finally we headed for home, barely staving off Connor's threatened meltdown by playing 80's music with a heavy bass line and lots of percussion.  I wheeled him straight into his bedroom from the car (any time I slowed down or looked like I was going to stop his lower lip started quivering) and he was out within ten minutes after I put him down.  I can't say I blame him-- it was a busy day.

Whew!

~Jess

In Which I Cop Out Of Writing

I'm going to cop out tonight, I'm afraid.  We just got home from going out with a bunch of friends in Seattle, and I'm beat!

We're having a great time showing our friends around town.  Today's activities included Zumba, walking about downtown Puyallup, the glass museum in Tacoma, sushi in Seattle, and an Irish pub, among other things.  Needless to say it was rather busy, but we had a great time! 

I'll write a proper report tomorrow, I swear!

~Jess

In Which Connor Breaks Down

This morning Connor was supposed to have his field day with school, but when we showed up we discovered it had been (mostly) canceled.  So we drove to Pike Place Market instead and did a little bit of shopping.  After Connor had his nap, I did a little more cleaning around the house in preparation for our friends coming in town to stay with us, which is when I made a big mistake.

See, we had this suitcase sitting in one of our closets that didn't really need to be in there.  And so I decided to move it to another part of the house, and not thinking about it at all I rolled it past Connor. 

He went ballistic.

He must have cried for about three hours.  And we're talking full-on, screaming melt-down here; he hit notes I wasn't even aware were in his range.  "No bye bye NO BYE BYE" he signed frantically over and over.  And then he demanded Jeremy, who was unfortunately in class, and when Jeremy didn't immediately appear he would break down again and sob like his little heart was breaking.

Sometimes I forget just how traumatic the events of the last year have probably been for Connor.  He's so laid-back and happy most of the time that it's easy to downplay how unhappy and scared all of the changes made him.  It's also easy to think that he doesn't really understand what happened, so it shouldn't have affected him as much.

But that suitcase triggered something-- I'm not sure if it was a fear that Daddy was leaving again or maybe that we were moving again-- and he absolutely lost it.  I held him in my lap and rocked him and sang to him, and I finally got him relatively calmed down, and then of course I had to strap him in his wheelchair because it was time to drive to the airport to pick our friends up and he completely broke down again.  He finally calmed down in the car, when it was evident that I was not, in fact, leaving him and by the time we got there he was almost cheery. 

But it's a wake up call to me that even though Connor seems to be pretty even-keeled, he was obviously deeply affected by the events of the past year and I need to be more sensitive to that.  Just because he doesn't always have the language to tell me what he's feeling, it doesn't necessarily mean that he isn't thinking about what happened and processing it in his own way. 

I'll know better next time.

~Jess

In Which Connor Has An IEP Meeting

We had a much better day today!

Thanks to Connor actually getting food (and therefore sleep) last night, he was in a much better mood today.  He came home from school, took his nap and ate some lunch, and then we were off to his IEP meeting for the year, which went just swimmingly.  No problems at all; the school district actually increased the amount of therapy they're giving him per week without any prompting on our part, and they retained all of his current services, including his one-on-one paraeducator/interpreter.  Everyone raved about how much they enjoy working with Connor, and it was pretty obvious they were all enthusiastic about what they do and genuinely want to make sure that he succeeds.

Have I mentioned that I love our school district?  Because I love our school district.  Connor's teacher is amazing, the paraeducators are amazing, the therapists are amazing, the support staff is amazing, the administration is amazing-- need I go on?  Seriously, if you are shopping around for towns in the Pacific Northwest and you have a child with any special needs at all, Puyallup should be at the top of your list.

I'm so glad we moved.

~Jess

In Which Connor Is A Starveling

Poor Connor. 

Last night around ten o'clock he threw up, and so I went in and turned down his feed.  At least I thought I'd turned it down-- I'd actually turned it off.  So at about four in the morning he woke up with an empty tummy and refused to go back to sleep.  Like an idiot, I didn't check his pump even though he kept signing "eat, eat!" so I tried everything else that it could possibly be (Maybe his diaper's wet-- no.  Maybe he's cold-- no.  Well, he can't possibly he hungry...) before discovering at around 7:00 that he had in fact not gotten any of his night feed and was now starving.  Feeling horribly guilty, I turned his pump on and he immediately fell back asleep, and I got him up just in time to put him into clothes and take him to school, where he was extremely crabby and tired. 

Not one of my best parenting moments.

He came home after school and took a three hour nap.  Then he refused to go to bed tonight until almost nine.  Joy of joys. 

The good thing that happened today was that we got our home study visit scheduled!  The social worker will be visiting our home in a couple of weeks, and she'll be spending three-to-four hours talking with us and viewing our house.  I'm excited and really nervous all at the same time, but hopefully things will go smoothly and we'll be one step closer to bringing Sylvie home!

~Jess

In Which Sylvie Has A Birthday, and We Get A Lot Done

We had another really busy day today!  Jer spent the day organizing our office, taking care of Connor and doing some general cleaning, which Jake and I worked outside on the deck.  We hauled away just over a ton of debris to the landfill, which was a lot of fun because we'd rented one of those two-axle dump trailers and I got to push the button to make it tilt up and dump its load.  Those things are really cool.  We also hauled a ton of bushes and other landscaping I'd dug out earlier in the week from the site where our new deck is going in.  We spent most of the rest of the day shoveling dirt to level the site so that we'll have proper ventilation underneath the new deck.  This will be my "homework" for the week, and I don't think I'll be needing any additional working out, let me tell you!  The new deck is significantly wider and longer than the old one to accommodate the ramps and wheelchair turn radius while still giving us enough room to have our outdoor furniture out there, so there's a lot of dirt we have to move.  We also did the prep for the ledger board today (this is a board that is bolted to the house which the deck is securely attached to) by cutting away the siding where the board will go.  It's exciting to know that in a few weeks we'll have a beautiful new deck!  Then we get to start on the paver patio and the sidewalks.  We're getting there!

For the whole second half of the day Joanna was here, which meant that we were able to get some significant work done.  I don't regret using some "date time" for this sort of thing; it's often difficult to get everything done that we need to do while taking care of Connor at the same time, so it's great that he gets some undivided attention while we get our projects taken care of.  I think he enjoys playing with Joanna but still having his parents around too, because then he gets to have the periodic attention of everybody!  It was raining most of the day today, so we shut the cats in the laundry room this morning and he spent some time early in the day hanging out just on the other side of our sliding door with the glass open and just the screen closed.  He really loves watching everybody; he especially loves the oscillating and circular saws, which he finds hilarious.  I'm so glad that we're doing this project now because while it's really easy to keep him entertained, it probably wouldn't be so easy to do this project with an active kindergartener who would want to not only watch, but participate as well.

Today was Sylvie's birthday; she's now five years old!  I thought about her a lot today; wondering what she was doing, whether or not anyone celebrated with her, and how hopefully this will be the last birthday she celebrates without family surrounding her.  Probably it was just another day for her; Thailand doesn't put a big emphasis on birthday celebrations in general, and with the number of children in her large orphanage complex (over 2000 kids) it's not likely that they would single her out and do anything special for her.  Sylvie may not even realize that it is here birthday today; it may not ever have been explained to her as she didn't have any language before she came to the orphanage.  It's likely that she's never had a birthday party or received any presents, as this isn't a Thai tradition.

I also wondered about what Sylvie's birth mom, if she is still living, would be doing today; whether or not she would take any time to commemorate a day that must have been one of the most important of her life.  It must be such a bittersweet day for her, and I hope that she's doing well.   

So happy birthday, Sylvie!  The next year will likely bring big changes for you, and with any luck next year we'll be able to celebrate with you!

~Jess

In Which Entirely Too Much Happens

We had a long day today.

This morning we officially started work on the deck, which meant that first we had to haul off all of the old fence and deck pieces to have some room to maneuver.  It's probably always best to finish an old job before starting a new one, anyway, so this was a good thing.  Anyway, we rented a flatbed trailer, hooked it up to Jake's truck, and took just over three tons of old materials to the dump before lunch (I am actually not exaggerating here-- they weigh it at the landfill).  Needless to say we didn't go to the gym today.  We still probably have one more ton of old fence and deck parts, as well as a bunch of yard waste (I dug up a whole bunch of bushes that were in the way of our deck expansion) that will go out tomorrow. 

It ended up being a really good thing that we decided to take out the deck entirely instead of just repairing it, by the way, because as it turns out whoever originally built the deck just attached it directly to the siding of the house, with no waterproofing or flashing at all.  All of the water draining from the deck was simply running straight down our foundation.  They left a bunch of rotting wood underneath it and didn't stain it for a number of years to top it off.  There were a couple of supporting boards and posts that were heavily infested with moisture ants, and their nest was slowly creeping towards the house.  In another year or so they probably would have been actively eating the siding, which was already showing signs of rot.  So I'm very glad we decided to go ahead and do this work, because we have the chance to do it properly! 

At any rate, after lunch we had a birthday party to go to, which was a lot of fun.  It was carnival themed, and while Connor was not particularly interested in the obstacle course or the face painting he just about ate his weight in cotton candy.  He'd never tried it before, and I believe he is now convinced he has discovered the perfect food; it dissolves instantly, tastes mind-numbingly sweet, and does not require any work on his part at all.  So needless to say he was just slightly wired when I took him home, and I had to put him down for a second quiet time because he was bouncing off the walls.  It was nice to see him doing something all of the other kids were doing (there were many children skipping home with major sugar highs this afternoon) and enjoying himself; we don't get very many opportunities to have that happen.

We got home just in time to have Joanna, our respite care worker arrive, because tonight was a date night for us.  So Jeremy and I dragged ourselves out to the bookstore, slumped into a sushi bar and then oozed on into a coffee shop at the end of the night, where it took us five minutes to order because we kept staring blankly into space instead of reading the menu.  We came home an hour early because Jer's feet were really stiffening up and we were both too tired to want to stay out any longer. 

So it was a fun day, and we got a lot done, but it was really, really long. 

~Jess

In Which I Must Schedule Eight Billion Appointments, And We Hear Back From Connor's Neurologist

We got a phone call from Connor's neurologist today.  Apparently he doesn't agree with the statement made by the "Hallway Team" yesterday that Connor is maxed out on his medications.  So he upped Connor's Trileptal again relatively substantially.  We haven't seen any side effects thus far, which is a good thing.  They'll check his blood levels when we go in next Friday to make sure that they aren't overloading his one remaining kidney.  We'd like to keep that working well, thank you very much.  Hopefully this will do the trick.  Finally. 

It's about time for me to schedule his next round of appointments-- I was waiting for school to end so that he didn't end up missing a lot of it.  For the yearly appointments it's not that big of a deal if we hold off until the summer to go.  So I'll be making appointments with urology (they see him because there is no pediatric nephrology clinic at the on-post hospital), nutrition, GI, craniofacial, the developmental clinic, audiology, and the dentist. 

Fun times.

~Jess

In Which Nothing Much Happens

The end of Connor's first year of school is almost here! 

I can't believe it went by so quickly-- seems like just yesterday I was dropping him off for the first time.  But here we are, a scant two weeks away from the end of the school year.  And okay, I'll admit it-- I'm totally going to miss him being in school.  Not only does he really enjoy it, but I get almost three solid hours to myself.  It's going to be very odd not having those any more; I've really come to look forward to them because they give me some much needed break time.

Oh well.  I'm sure summer will fly by and then I'll be lamenting having to send him off again.

I talked with the nurse with the neurology department again today.  She said that she'd talked with the doctors on staff (she called them the "hallway team") and we are now maxed out on Connor's current meds for his weight.  We're not sure exactly what our options will be at this point, but we've been told to expect a call from Connor's neurologist tomorrow and he'll talk to us a bit more about possible treatment.

I'm not sure what they'll try next; we'll just have to see!

~Jess

In Which I Encounter A Parenting Dilemma

Here's Connor studying Anatomy and Physiology with his daddy.  Anatomy and Physiology is Very Serious Business.

In other serious (but much less adorable) business, the neurology department Connor's doctor is with wants to wait and let the medication levels in his blood build up a bit more before changing anything, since we'd upped his medication a mere five days before he had that seizure on Sunday.  Hopefully he won't have any more; keep your fingers crossed for us!

I have a bit of a dilemma in regards to Connor's recent habit of pulling on his sleeves.  On the one hand, he's stretching the sleeves and necks of all of shirts out terribly-- particularly his sweaters-- which gives him a sort of waifish look that, while admittedly endearing, does not reflect very well on me.  Also the constant rubbing is starting to chafe his skin at the wrists, and he takes his shirt half-off in the middle of the grocery store freezer aisle.  So I can put him in short sleeves and just cover him up with a blanket when we're outside.

However, when he's playing with his sleeves he's leaving his hearing aids alone.  And while he'll keep them in without too much fuss in our perfectly familiar, routine-oriented, quiet home I am constantly having to pry them out of his fingers and put them back on whenever we are anywhere that has noise, activity or makes him the least bit uncomfortable.  Of course he's forever pulling them out where he needs them the most-- in those noisy, active environments-- unless he's too busy playing with his sweater to bother with yanking them out.

So which do you think is the lesser of two evils here?  I must admit I'm kind of stumped.

~Jess

In Which I Torture Connor Horribly or We Go Swimming, Depending on Whose Perspective You Prefer

Yesterday's time at the pool was interesting.

Connor has a love/hate relationship with the indoor toddler pool down at our local YMCA.  He loves the feel of the water if there's absolutely no one moving it around except for him.  He hates being splashed, the noise, the parents and older kids in the pool, the water moving around him in unexpected ways, and touching the bottom of the pool with his feet.  So maybe actually it's a hate relationship, which a tiny bit of liking thrown in sometimes, but only under the right circumstances.

Also he believes that the giant mushroom fountain located in the toddler pool, which combines noise, splashing, and the water moving unexpectedly around him is in fact a diabolical torture device designed especially to inflict suffering upon his person. 

But I like to push the kid, so we go to the pool on a semi-regular basis, and if he spends the vast majority of the time making his angry face at me, the Fountain of Evil, the other parents, and all of the children speaking in tones above a whisper and moving faster than a slow crawl, well then at least he's getting some good communication practice in.

The big reason I continue to take Connor, other than the obvious sensory therapy and desensitization benefits, is that after we get out of the pool he seems to spend quite a bit of time exploring what his legs can do.  This child normally has two positions he puts his legs in while we're doing weight bearing exercises: knees locked, or spaghetti legs.  While he'll shift his weight from side to side and he can stand up (with help) from a sitting position, he doesn't seem to understand how to bounce on his legs like most kids do relatively naturally.  When he's in the water, though, I can get him after about half an hour or so to practice a little bit of kicking and even a smidgen of bouncing, and after we get out of the pool he continues to experiment with it for a little while.  I'm hoping that if I keep working with him eventually he'll be able to transfer it to dry land for more extensive periods of time.

Connor probably would rather we practiced in the bathtub.

~Jess