In Which We Have An Extremely Long Day, But Figure Some Things Out

Long, long day today, but I think we might have made some progress.

It didn't start out so hot.  I went down to one of our little coffee shops to get Jer and I some breakfast-- one that we visit pretty often and so are fairly well known at.  I'd been in the day before and so they knew Connor was having some issues, and they asked about him.  One of the customers in the store chimed in.

"Your son has seizures that make him stop breathing?  My nephew has those too!"

"Wow," I said.  "That's kind of a crazy coincidence.  Connor's seizures are really rare, so we almost never hear about anybody else with his type."

"Yeah," the guy said, "they sound just like his.  How old is your son?"

"Four," I replied.  "How old is your nephew?"

"Oh he died two years ago."

Yeah, that's right.  He died.  Two years ago.  From the seizures.

Well, that just made me feel a whole lot better, right there.   Just what I needed to hear.  What a pick-me-up of a conversation.

Anyway, so I went home, and Joanna and Jake came over around 11:00 to watch Connor and work on the deck, respectively.  Jer, Jake and I had only been outside for about twenty minutes when Joanna yelled through the screen door that Connor was having a seizure.  This one didn't last very long-- only about twenty seconds-- but there was no way I was going to wait until Monday to talk to a neurologist.  I called the hospital and had the neuro on-call paged.

He got back in touch with us in about ten minutes, took down all our information, and told us he'd review Connor's files and get back in touch with us as soon as possible.  Once he called back, he didn't waste any time helping us put together a game plan!  The first thing we needed to do was get these seizures stopped, so he called in a prescription for a few low doses of Ativan to our local pharmacy and told us to go ahead and give Connor one dose now and another if he had any more breakthrough seizures.  Then he asked us to go into our local emergency room and get a blood level of Connor's latest seizure medication, Tegretol, drawn to see whether or not Connor was getting what they call a "therapeutic dosage," i.e. a level that fell within the desired range to stop the seizures.  If Connor's body was metabolizing the medication in a weird way, then the levels might not be high enough to stop the seizures and that might be the reason why it wasn't working.  If he was getting enough Tegretol but still having these seizures, then it would mean that the medication had failed and we should try a different one.  Once we got the blood levels back (which would probably happen tomorrow) we could give him a call and figure out where to go from there.

He wanted the blood levels drawn at about 5:00 pm because this is when Connor would have the smallest amount of drug in his system.  It was about 12:30 in the afternoon when we got off the phone with him.  I ran down to the pharmacy and grabbed the Ativan, which we gave Connor as soon as I got home.  Then we started getting ready to go down to the ER.  We figured that if we needed a blood draw at five, we needed to get there at least three hours early because we'd probably be at the very bottom of the queue for treatment, since Connor (thankfully) wasn't actively seizing, experiencing acute trauma, etc.  The last thing we wanted to do was march in half an hour before he needed his blood drawn to a busy ER and demand to be seen before everyone else waiting because we had a time limit.  So we drove down there around 2:00, forgetting in the process two things. 

The first was that this was our local private community hospital and not a giant state hospital, so the emergency room wasn't as likely to be crowded.  The second was that when you bring in a sedated (the Ativan knocks Connor for a loop) four year old, plop down a six-page list of medical conditions and say the phrase "resuscitated three times yesterday" medical personnel tend to take note.  We had a bed in the back in ten minutes and the doctor saw us five minutes later.  Whoops.

So we spent about three hours hanging out in our nice little (private!) room, with the nurses popping in occasionally to make sure we didn't need anything and to coo over Connor, who as usual quickly won the affections of every female person in the vicinity due to his overwhelming aura of cuteness.  Once 5:00 rolled around they drew Connor's blood, and while unfortunately it took three sticks (and the last one was right at the base of his palm-- not a pleasant place to have blood drawn from) he was an extremely brave little boy; he didn't even cry for the first two pokes!  They ran his levels and gave us the results ten minutes later-- how's that for amazingly fast service?

So it turns out that Connor's Tegretol wasn't too low.  It was actually too high-- and by a pretty substantial number.  Keep in mind that this medication was drawn when Connor's seizure medication blood level would be at its lowest point for the day, and you can see that this was a big problem.  Even though we'd originally planned to call the neurologist back the next day, the ER doc asked us to hold Connor's evening dose of Tegretol and call the neuro back immediately to figure out what he wanted to do.  Then he printed out a copy of the levels for us, had us sign a single piece of paper, and we walked out of the emergency room twenty minutes after the blood draw was done.  Least traumatic ER visit ever.

So we called and had the neurologist paged on the way home, and he called back shortly after we walked back in the door.  After hearing the results, he told us that there was no doubt then that the Tegretol was failing to do its job, and not to give the little guy any more.  Then tomorrow we're to switch straight back to giving Connor Trileptal, which is what he was on before the Tegretol.  One seizure a week, which is what he was having on the Trileptal, is a heck of a lot better than three a day.  Hopefully that medication change will tide us over until Monday, when they'll put together a new game plan for how to proceed.  We're supposed to call and update the neurologist on-call tomorrow to let him know how things are going.

So in conclusion, progress is being made, which is a very good thing.  But it was a long, long day and I'm sort of glad it's over.

~Jess

In Which Things Continue To Go Downhill

Connor had three seizures today.  I am seriously not liking this trend.

This morning Connor's neurologist had us drastically up the Tegretol, in response to the seizures from earlier in the week.  He had the first one today at about a quarter after one in the afternoon-- an hour and fifteen minutes after his first dose of the elevated med.  It was about thirty seconds long.

The second came around three in the afternoon; I had ducked out of the house to run some errands and left Connor with our very competent respite care worker, who called me as I was picking up some munchies at the grocery store to let me know he was seizing.  I deposited my half-full shopping basket into the hands of a startled clerk with a hurried excuse and dashed out of the store to jump in the car and head home, liberally cursing every red light.  Joanna called me when I was about half-way there to let me know it was over and I didn't have to rush.  This one ended up being about two minutes long. 

The third one was around six in the evening; about ten minutes after Connor's last dose of meds.  Jeremy and Connor were lying on our bed singing a song in preparation for Connor's bedtime when Connor suddenly stopped responding.  This one lasted about two minutes as well.

We didn't hear back from the neurologist tonight, so hopefully we'll hear something tomorrow.  I have the number to page the neurologist on-call for the weekend, so if he has any more tomorrow (which is unfortunately extremely likely) we'll be calling it in again and with any luck we'll be able to get a quick game plan.  It's a catch-22 sort of situation; it may be that Connor's new seizure medication is actually triggering the seizures rather than helping (in the two weeks before the med change Connor had two seizures, and in the two weeks after the med change he's had eight), but sudden withdrawal from Tegretol is extremely likely to cause-- you guessed it-- seizures.  And that's even with starting a new seizure medication at the same time.  Then again, it may just be that the medication is ineffective or isn't a high enough dose. 

So I'm not sure what needs to happen, but whatever it is, it needs to happen soon.

Connor is, obviously, exhausted and extremely crabby.  I'm quickly getting that way; there are only so many major adrenaline highs you can have in one day before you start becoming kind of burned out.  Tomorrow we have respite care and Jake is also coming over to work on the deck, so there'll be four of us here, which will be nice because there will be plenty of people if we end up with an emergency.  The last time Connor had this many seizures in one day was back in January when he went status.  While I'm really, really hoping that's not what we have to look forward to tomorrow, given his past history I'm pretty worried that's where we're going to end up.

Though I may spend a good portion of tomorrow napping instead of helping with the deck, as I'm anticipating about a four-in-the-morning wake-up time for Connor.  Since he always sleeps for a while after having a seizure, he napped for seven hours today.  I'm happy to report that I spent none of that time doing housework and a substantial portion of it eating Ben and Jerry's straight out of the carton, as well as some rather delectable brownies.  I'm sure you are all glad to know I have my priorities straight.

Keep us in your thoughts and prayers, folks.  We could sure use them over here.

~Jess

In Which Connor Has Another Seizure And We Experience A Milk Explosion

I had just finished strapping Connor into his wheelchair today so that we could go pick up a prescription renewal of his at the pharmacy when he slumped over in his chair.

Yep.  Seizure.

I always freak out a little when he has a seizure in his chair because when he's upright it cuts off his airway pretty immediately, and also because it takes me a little while to get him out of all the straps.  So I wasn't thinking about the fact that he was plugged into his g-tube pump when I hastily undid everything and yanked him straight out.

His g-tube, connector still attached, popped out of his stomach.

Picture the scene, if you can.  I'm holding Connor, who is already turning blue-gray and about to stop breathing at any second.  The g-tube hole, now open on his stomach, is fountaining Pediasure all over my shirt, arms, and the floor.  The pump, still turned on, is busily pumping more formula onto my pants.  The cats are going nuts because they can't figure out why the heck we're throwing good food all over the floor.  Once I start mouth-to-mouth, I have to try and fend Loki off with my foot because he keeps trying to come up and investigate.

Not one of our brightest moments.

By the time I got him breathing again (the seizure lasted about a minute) and was ready to deal with the pump and the g-tube, it looked like Connor and I had gotten into a milk fight or something.  And of course he was extremely sleepy and crabby, and didn't particularly appreciate me reinserting his g-tube or giving him a shower. 

So that was my wonderful day.  We've got a call into the neurologist and hopefully we'll hear something back tomorrow, as Connor has now had five of these things in the last two weeks.  Lovely.

We could use some good thoughts this way, folks.  Also some more mopping solution.  I get the feeling I may need it.

~Jess

In Which We Have A Sort Of Mixed Day

Long day today, so this is going to be short.

The good: Connor had a nutrition appointment today, and his length-for-weight was smack dab in the 50th percentile!  This means he's growing up perfectly proportionate: just what we like to hear.  He's also on the growth chart now for weight!  His height is sliding by just under the 5th percentile.  We've seen a huge difference in his height and weight since he got the g-tube, and I don't regret doing it for a second! 

Also, we got word that our background checks from Texas came back, our homestudy was officially approved, and we're entered into the Thailand program!  This is extremely exciting and puts us one step closer to bringing Sylvie home.  Sylvie is now being officially matched with us at our adoption agency.  This means that while she's not matched to us yet in Thailand and could still potentially be adopted by someone else through another agency, reunited with her birth family, adopted by someone in Thailand, etc, we're the only family that will be working towards her with our agency.  Our adoption agency will be traveling to visit her orphanage this month, so hopefully we'll get some updated pictures, video and information about her soon, too!  Of course, I can't show any of ya'll the pictures or video as she's not officially ours yet, but trust me when I say that she is extremely cute.  We can't wait to see how much she's grown!

The bad: Connor had another seizure today.  This makes for number four in the past two weeks.  Not good.  The trend we're seeing is that the seizures are shorter (this one was only thirty seconds long) but coming much more frequently.  Connor has only been on his full dose of meds for five days now, so it's possible these are still breakthrough seizures.  We're going to call the neurologist in the morning and let them know what's been going on, though, as four seizures in thirteen days is kind of disturbing, and certainly doesn't help my stress levels any.

On the adoption front, the political unrest seen in Thailand might very well have slowed the process down even further.  It looks like we might be bringing Sylvie home closer to Fall or Winter of 2011, and even maybe as late as 2012.  That's kind of a bummer; especially since she's not getting any access to adaptive equipment (or any speech therapy) while she's there, and the longer she goes without hearing aids the less likely it will be that she'll be able to make use of her residual hearing.  We'd like to get her home the sooner the better!  This waiting thing is going to be relatively agonizing, I'm pretty sure.  Oh well: there's nothing we can do about it, so we might as well not worry about it and take it as it comes.

So like I said, a good-and-bad sort of day. 

~Jess

In Which Li Li Gets A Pretty Palatable New Friend, And Connor Tries Out An iPad

So today went a bit better, I'm happy to say. 

Connor was a total crabby pants, but that may have been because instead of paying attention to him this morning, I was watching our new gerbil (who is as yet unnamed) and our old gerbil (Li Li)attempt to dig through the mesh divider I've set up in their cage so they can happily settle down to the business of fighting to the death, which is what gerbils do when they meet a "stranger."  Vicious little things, gerbils.  At any rate, I'll be rotating which side of the cage their staying on daily until their scents are mixed enough that they stop trying to kill one another and decide to be pals. Supposedly it usually takes about a week, but we'll see.  Signs that they're starting acclimate will include attempting to groom one another through the mesh, sleeping next to one another, and when Li Li quits trying to season our new gerbil with pepper and miniature lemon wedges. 

At any rate, Connor did fine this morning but I believe that the novelty of the new gerbil quickly wore off, and then he wanted to go play something instead of watching me frantically add more wire to the top of the divider to prevent Li Li from climbing over the top in an aerial pursuit of his dinner.  I mean new friend.  Yes.  But for Connor pretty much after 11:00 it was one giant meltdown after another, with a brief hiatus for Speech Therapy, where he did relatively well.  It was probably the gerbil combined with the seizure of yesterday and the fact that he didn't sleep well last night-- he cheered up considerably after his three hour nap late this afternoon.

Julie, our Speech Therapist, brought out a new toy for him to try out today-- an iPad!  They have a number of adaptive applications -- Robert Rummel-Hudson has discussed the topic much more elegantly than I'd probably put it-- and the thought was that Connor was more likely to do well with an iPad than a PECS system because there's less touching and manipulating to do.  We put up a cute little xylophone application for him just to get him used to using his hands to work it, and he caught on really quickly!  I'm pretty stoked; the iPad or another AAC might just end up being a fantastic way for Connor to communicate with those around him that don't understand his Home Signs-- the personal language he's made up with his limited motor skills.  So we're going to see how this goes.

Technology is awesome!

In Which My Day Starts Out Great And Completely Tanks, And Now I Don't Get To Go To Disneyland

This was going to be a post about how I spent all of today getting ready for our upcoming road trip.  I went to the library and picked up a theme box on travel as well as a book for Connor about California.  I drove to Half Price Books and picked up the music I consider a requirement for a road trip of this caliber; music I remember from the road trips I took with my parents.  It's not a true road trip, by the way, unless you at some point find yourself barrelling down the highway belting out the lyrics from Steely Dan's "Deacon Blues"**  And I was going to talk a little bit about the crazy road trips I remember from growing up, like the one where we went something like 100 miles out of our way because there was a road cut we wanted to look for fossils on that had a particularly rich deposit of Trilobites.  It had green rock because of the fossilized Trilobite poop.  I am totally not making this up.

Anyway, so that was what I planned to talk about.  And then this evening Connor had another seizure.  This is his third in the past week and a half.

Fact Number One: No matter how I spin it, I can't justify taking him on this trip. 

This was only a forty-five second one, and he was only paralyzed for about five minutes afterwards.  And I only had to give him two breaths before his system rebooted and he started breathing again.  But this is only four days after his last seizure, and the possibility of them being breakthrough seizures due to the medication change doesn't lessen how dangerous they are.  He's been on the full dose of medication for two days now, and we're only a week away from when we were supposed to be leaving for the wedding.  We'd be gone for ten days.  If this trend continues, he will have at least one seizure while we're in California; potentially on the highway and between towns.  Even if Jeremy were to drive down with us, it just isn't a good idea to leave on this trip knowing the kid is going to have a seizure in a different state far, far away from his doctors and medical records.

Fact Number Two: I am horribly disappointed about this.  I cried.  Seriously.

I had no idea how much I was looking forward to this trip until I realized it wasn't possible to take it.  I spent the whole day thinking about how fantastic it was going to be and reminiscing about all the great road trips I took with my family as a child.  And I want to make those kinds of memories with Connor, and it sucks that it's not going to happen, or at least not right now.  The rather large portion of my brain that still acts like a four-year-old spent a substantial portion of this evening stomping around screaming "NOT FAIR!!!"  I mean, everybody else gets to take trips like this.  Why not us?  And we were going to do things.  Fun things.  We were going to Disneyland, for Pete's sake. 

I can't even take the road trip without Connor and go to Disneyland by myself.  Which of course would not be as fun as Disneyland with Connor, but hey-- it's Disneyland, so I'm pretty sure I could have some good times there even if I don't get to have one of those awesome passes that lets you cut in line (believe me, there are some perks to having a child with special needs, and that is a big one).  But Jeremy has to work, which is why he wasn't going on the road trip with us in the first place (he was planning on flying down for the wedding on the weekend) and so without me there no one is available to watch Connor.  I'm still going to the wedding, but now Jeremy is staying at home with Connor and it's me flying in on the weekend and then flying out the next day, rather than getting to drive and do all the fun stuff like spend extra time with family and visit friends and go to the Monterey Bay Aquarium and the San Diego Zoo and Disneyfreakin'land. 

I know.  I'm whining.  I'll get over it.  In fact, I've already taken the first steps to get over it; I went and did a really hard workout, and then I drove to the grocery store and bought myself my favorite comfort food for dinner: SpaghettiOs.  And no, I have no idea why as an organic-loving, CSA share-buying, healthy-eating type of person I would have SpaghettiOs as a comfort food, but I'm sure it says something deep and meaningful about my psyche.  Feel free to analyze.  At any rate, I got those and one of those fizzy bath balls and also a very large portion of chocolate, which is absolutely essential to my mental health as well but probably says less about my psyche and more about my waistline. 

I already ate my SpaghettiOs, and after I finish this I'm going to make myself a cup of tea and haul it, my chocolate and a book into the bathroom, where I will be taking a long, long, fizzy, scented bath.  And then I will make Jeremy give me a foot rub, and in the morning things will look much rosier and I'll be able to take a deep breath and start canceling all of our hotel reservations and trying to find myself a last-minute plane ticket. 

But . . . Disneyland. 

Sigh.

~Jess



**  ". . .drink Scotch whiskey all night long, and DIE BEHIND THE WHEEL."  I capitalized "die behind the wheel" because you have to scream that part.  It's very important for creating appropriate road trip ambiance.

In Which Jer And I Go On A Date

What a great day we had today!

While Joanna and Connor hung out and Jake worked on the deck, Jeremy and I took off for a date!  First we headed to lunch, which we ate at our favorite Greek place.  Then we walked around for a bit and grabbed some coffee before sauntering over to the movie theater, where we saw Inception.  Awesome movie, by the way-- totally worth seeing.

After that we went home, where we discovered that Jake had almost completed the ramp up to the deck!  I'll take some pictures tomorrow so you all can see; things are really starting to be fleshed out.  Jer and I changed clothes and took off with our bikes in the wheelchair van (which is good for more than just wheelchairs) towards the Interurban Trail, which is a lovely bike ride on mostly flat terrain.  We didn't do the whole trail-- about a twenty mile loop of it-- but that was more than enough, given that it was 88 degrees outside.  I practically bathed in sunblock before we went out; as I will burn in about five minutes in that kind of weather.  All those years of living in Texas did nothing to help build my immunity to sunlight.  Oh well. 

I can at least be satisfied that I am now not the fairest-skinned person in the house anymore; Connor has achieved near-vampire status in his dislike of hot, sunny weather.  Because for some mysterious reason he doesn't sweat (really-- this is not an exaggeration!) and two medications he's taking could potentially make him photosensitive, we generally keep him out of the sun.  He has a tendency to overheat extremely quickly.  Today apparently he spent most of his time in just a diaper, because having clothes on was making him overheat in the house.  I get the impression that Connor would be perfectly happy if we skipped summer all together and went straight into fall.

But Jeremy and I enjoyed ourselves even if it was (for this area anyway) eight billion degrees outside.  When our ride was over we stopped by a fast food place, which we almost never do but were in the mood for today, and instead of the grilled chicken wrap I ordered the place screwed up and brought me a bacon cheeseburger, which I happily ate.  Because my intentions were good, and I didn't actually order the cheeseburger, I'm relatively sure the calories don't count.  That's how calories work, right?

At any rate, it was a yummy ending to a pretty awesome day!

~Jess

In Which Jer And Connor Have A Daddy Day, And I Work On The Deck

I had an awesomely productive day today.

It was mostly Jeremy and Connor free, though, because the guys went on a field trip together!  Connor doesn't get to go out with just his daddy very often, so he was pretty excited about it.  They spent the whole day together; they were gone from ten in the morning until five in the evening!  They started out at the Glass Museum (where they watched the artists make snakes out of glass!), wandered around downtown Tacoma for a while and found some lunch, and then drove back to Puyallup and saw Toy Story 3.  Or about two-thirds of Toy Story 3, anyway; apparently Connor got bored towards the end and started making way more noise than was movie-appropriate, so they ducked out early.  Oh well.  Then they finished up the day with some ice cream!  I'm so happy that the two of them got to spend some quality time out and about together, and Connor had a blast.

I spent most of the day either cleaning the house or working on the deck; Jake was here today and we mixed and poured the concrete for the front ramp landing.  Jake gave it a brush finish, which looks fantastic.  I'd never worked with concrete on this scale before, and after having now done one measly 8 foot by 4 foot ramp landing, I'm relatively sure I never, ever want to hand mix concrete for any larger projects.  The twenty-some-odd bags we had to mix for this were more than enough to make me sure I will have very sore shoulders tomorrow.  We'll be pouring the landing and sidewalk for the ramp that runs down the side of the house in a few weeks, and I'm pretty sure we'll be bringing in a truck for that, because there's no way my shoulders and back would be happy mixing up that amount of concrete.

We also planned out how high the benches on the deck will be set, and I spent some time this evening designing our paver patio that will go in next to the deck and calculating out costs and the number of pavers we'd need for the pattern I drew.  I believe the patio will be the next project after the deck is completely finished; we're just kind of working out way out into the yard.  I don't think the patio will be quite as intensive a project, though, because we'll be sand-setting the pavers instead of using concrete.  Most of the work will be digging out the area to lay the gravel, sand and pavers.  Which is more than enough work, believe me.

This thing is going to be so cool when it's finished.

~Jess

In Which Connor Has A Quiet Day, And We Have A Sad Gerbil

Connor and I had a much-needed quiet day today. 

No more seizures, thankfully.  It's very likely that his seizure yesterday was, in fact, a breakthrough seizure because of his medication transition.  Tomorrow will be the first day he's on the full dose of Tegretol-- hopefully it will go smoothly and we won't see any more of those.

He had full function of his left side back this morning, which was nice.  We spent most of the day cleaning, catching up with family via phone (Connor provided the background piercing screaming-- he's not a big fan of Mommy's attention being on something other than him) and doing some gentle sensory therapy.  This is the first quiet at-home day we've had for a while, and it was interesting to watch Connor.  I think he was actually a little bored by our quiet, safe house, which is definitely a first for him.  I think he's started looking forward to our field trips, which is pretty amazing.  I'll be sure to take him out somewhere interesting tomorrow-- I'd like to keep that trend going!

In other topics, Connor's gerbil, Lili, has been spending a lot of time moping around lately.  Since he ate his brother a few months ago, he's taken to spending more and more time either eating or curled up in his nest.  I was worried he was getting sick, so I pulled out our gerbil books and did some research.  Turns out gerbils need a companion or they get depressed.  Seriously-- we have a depressed gerbil.  Since they don't make gerbil Prozac, apparently the only solution is to get your gerbil a companion.  I'm a little unsure of how this is going to work out, given the fate of Lili's last companion, but we'll use the recommended "split cage introduction" method and see how things work out.  So I'll be purchasing some hardware cloth and fashioning up a barrier when we get home.

I should probably mention that this will be a male gerbil companion.  We have no desire to experience the Miracle of Life around here; especially as I will be compelled to either find all of the gerbils perfect homes or keep them, and this will probably result in me having about 8,000 gerbils.  When you consider one pair of gerbils can have up to ten litters a year and have five to nine pups per litter, it wouldn't take much to turn me into That Crazy Gerbil Lady.  So Lili will have to spend his life celibate.  Tragic, I know. 

It's also relatively tragic that I'm worried about depression in a gerbil.  Oh well.

~Jess

In Which We Have A Not So Wonderful Day

Not the best of days today, I'm afraid.

First a little bit of good news-- Connor's rash, though rather nasty looking, hasn't spread at all, and I'm about 95% sure it's just a bad case of diaper rash brought on by the change in brands.  I'm glad I waited before calling the doctor, as I would have looked pretty silly bringing him in for diaper rash.  We switched him back to his old diapers (that'll teach me to buy things because they're on sale) and he was looking much better by this evening.  Anyway, on to the fun that was the rest of our day.

This morning we were supposed to be meeting Jer at an army function, but we ended up late because Connor threw up all over himself and me as I was putting him in his chair to walk out the door.  I got us both cleaned up and changed, went to put him in his chair again, and he staged a repeat performance. 

A shower, yet another change of clothing, and twenty minutes later, we were finally on our way.

We would have arrived only about five minutes late, but as this was a major event of course all of the close wheelchair van parking spots were taken and we ended up driving around for twenty-five minutes looking for a space; finally parking about three blocks away.  We got to the parade field just in time to hear the last ten minutes or so of the ceremony.  That's a little more than fashionably late.

Then we got caught in the rush of everybody trying to leave at the same time, and as a result were ten minutes late to Occupational Therapy.  Lovely.

Connor seemed a little off at therapy-- nothing big; he just told us he was tired and didn't want to work at all.  He's been doing so well with his sensory issues in the past week, and so he did his very best to prove me wrong by not wanting to touch anything.  We all have our off days, I guess-- might have been the change in routine, and the fact that he was probably picking up on me being slightly flustered by being repeatedly late.  I hate being late.  He was also kind of upset about how we saw Daddy and then left him on post instead of bringing him with us.  I think it triggered memories of leaving Jeremy at the hospital.

So we went back home, where Connor decided that instead of taking a nap he was going to have a complete meltdown and cry unless he was held for an hour and a half.  Finally he calmed down and I put him to bed.  Then instead of cleaning the house, I took a nap.  Priorities schmorities-- I needed a nap.  Unfortunately Connor woke up a scant hour later and immediately began crying again.  I got up and groggily staggered into his room to pick him up.  I don't wake up from mid-nap very easily.  After a while he calmed down and was perfectly fine so long as he was no more than two feet from me at any given time and could see me.  This made cleaning, cooking dinner, etc. pretty much impossible.  I finally decided that instead of trying to throw something together with what we had in the fridge, I'd run with Connor down to the grocery store and pick up something ready made, as it would be easier to deal with, and maybe the change in scenery would distract the little guy for a bit.  I got him in the car and we were almost to the grocery store when he slumped over sideways.

Yep.  Seizure.

So I ended up screeching into the grocery store parking lot and doing mouth-to-mouth on my kid outside instead of going in to find the chocolate I so desperately needed.  This one was about two and a half minutes long, and I did rescue breathing for about a minute and forty-five seconds of that.  Connor woke up, threw up all over the floor of our van, and then, surprisingly, seemed to be feeling okay-- he was actually less cranky than he had been earlier in the day.  I have to wonder if maybe he could feel the seizure coming on, and that was part of the reason for the crankiness.  At any rate, since I was already at the grocery store and Connor had to stay in his wheelchair to get home anyway, I ran in with him and grabbed something to eat.

Or at least, I tried to run in, but I discovered at the checkout line I'd left my wallet in the van.  Then when I got back out to the van I realized that instead of actually pulling into a parking spot, I'd only pulled Rowbert about halfway in, so the entire rear half of my van was sticking out into the road.  I ended up just grabbing my wallet and going back in, ignoring all of the irate looks I was getting, as Connor's postictal drowsiness was starting to wear off and he was making dangerously crabby noises again.  We went home where he was extremely sad lying in his bed for about ten minutes before falling asleep.  It's shaping up to be a great night too-- he's already thrown up three times since I put him down.  He's not running a fever or congested at all, though, so I think the seizure just unsettled his stomach.

Oh, and did I mention his entire left side was completely paralyzed by the seizure?  Last time I cleaned him up he was just starting to move it a little. 

Poor little guy.  What a day.

~Jess

In Which Connor Sees Some Cool Bugs

So today Connor and I took a field trip to Bug Safari in Seattle!  They're sort of a gift shop/exhibit combination, with the space split about evenly between the two.  They had about 50 different kinds of insects, arachnids, millipedes and centipedes arranged in large tanks around the room.  While it seemed to be geared more towards elementary and middle school aged children, Connor still had a good time.  His favorite bugs were the Sunburst Diving Beetles and the Goliath Bird-Eating Spider, which was a spider with a body about the size of a baseball.  I'll spare the squeamish by not posting pictures.  I'm the type of gal who, when I find spiders in the house, carefully picks them up and takes them outside so they can live in my garden, so I thought it was pretty cool.  Though I might think twice about picking up a spider that size-- even with my trusty rolled-piece-of-paper method.

Before we visited Bug Safari, however, we had to get there.  This proved to be a bit of a problem. 

See, the store is located on the third level of what is known as the Pike Street Hill Climb.  This involves a whole lot of stairs.  And no handicap ramp.  And no elevator.  Apparently if you call ahead someone will give you access to a service elevator at the rear of the building the store is in, but of course we had no idea this was going to be a problem, as we just assumed they'd have some sort of a wheelchair ramp.  Luckily we had a friend with us, and she graciously helped me lift and carry Connor's wheelchair up three flights of stairs.  So if anybody with a little one in a wheelchair plans to make a visit to Bug Safari (or the Mexican restaurant, gelato place or other stores located in this building)-- either call ahead or be prepared to do some heavy lifting.

We rode the service elevator back down.

After our trip to Bug Safari, we walked up and down Pike Street for a little while.  A street busker saw us and  called us over because he decided that we had to hear a special song.  By some weird coincidence, he sang "There Ain't No Bugs On Me."  Connor thought it was fantastic-- he was totally enthralled, and giggled and clapped his hands through the whole thing.  I'm not normally big on watching and tipping street buskers, but I gave the guy a fiver.  If he can entertain Connor to that degree, he deserves it in my opinion. 

After a brief stop in the park, we bid goodbye to our friends and grabbed some lunch at Piroshky Piroshky Bakery-- one of my favorite to get portable food-- and then stopped by the Perennial Tea Room for something to drink.  We sat outside and people-watched for a while, which was fun.  The market area is always full of interesting people, and while the Perennial Tea Room is a little off the beaten path it still gets its share of colorful characters.  Finally we walked down to Fran's to pick up some of those ridiculously good salted caramels for Jeremy (and maybe a truffle or two for me) and it was time to go home, after a quick stop in a restroom, which is where I discovered Connor was sporting an extremely nasty looking rash all across the right side of his rear end.

So we canceled our evening plans, as Connor was not likely to be in a wonderful mood, but also because one of the potential side effects we're supposed to look out for with the little guy's medication change is rash.  Apparently you're supposed to tell your doctor if you develop a rash while on Tegretol, as one of the (extremely rare) side effects of the medication is toxic epidermal necrolysis-- also known as "your skin dying and falling off."  Glorious.

We did just up Connor's Tegretol this morning, per the doctors orders on transitioning between Tegretol and Trileptal.  But we also tried a different diaper brand (we switched about a week ago).  So more than likely this is just a nasty reaction to the different diapers-- Connor's not running a fever and, other than being itchy, he doesn't seem to be in any distress.  I ran to the store this evening and grabbed a tube of diaper rash cream and Connor's regular brand of diapers.  We'll take a look in the morning and see whether or not he's looking better, and if the rash has spread significantly (or shows up on parts of his body other than his rear) than we'll put a call in to the doctor.  It's probably nothing to worry about, though; we're certainly not going to call them for a case of diaper rash.  Lord knows we're in that office enough without abusing the system.

But otherwise we had a fun day!

~Jess

In Which Connor Wishes He Could Find A Decent Exterminator

This morning Connor and I went to the library and picked up his theme box for the week.  We're doing bugs, and the box contained a bunch of fun things to look at and touch, including books, plastic insects and arachnids, and a number of puppets. 

As soon as we got home I set Connor up in his stander and I began my torture session (ie sensory therapy) with the items in the box.  There were two butterfly fingerpuppets that fit perfectly on his thumbs and two that fit on my fingers, so we tried those out for a while.  I told him all about butterflies while carefully demonstrating how to make the puppets look like they were flying. 

Connor had other ideas about what to do with his puppets; ideas that involved them not touching any part of his body.  He seemed to think that if he held his arms stiffly out at a 45 degree angle from his body and then flung his torso from side-to-side this would somehow dislodge the butterflies.  When that didn't work, he tried the arm-flapping method.  Pretty much all of the pictures I took of him look like this as a result.  Isn't that a wonderful facial expression?  He looks like he's having a great time!

He didn't cry, though, so that's a good thing.  Hopefully by the end of the week he'll be relatively used to these. 

I let him squirm for about five minutes and then took the puppets off and replaced them with our vibrating bee toy (not from the box but in our theme)-- if you put it in the tray attached to his stander the vibration is strong enough to be felt through the whole frame.  He was much more enamored with that toy, and he had a fun time turning it off and on.

Then we read a quick story about bees, and after that we were off to the audiologist!  It turned out that Connor would have desperately needed new earmolds even if he hadn't lost one, as he's grown significantly since the last time they were done.  We gave Connor the choice of whatever color earmolds he wanted, but he didn't express any interest in picking his own color, so I did it for him.  There are a ton of cool colors out there to choose from-- we ended up going with a lovely translucent blue, which I thought would be easy to find if he manages to yank them off the hearing aid and throw them away again.

That's going to be significantly harder for him to do, though, thanks to the new torture device that the audiologist and I discussed today.  Since Connor refused to keep his hearing aids on at school (he literally pulled them off as we entered the building) and has a tendency to jerk them out any time he's tired/pouting/distracted/bored/etc, we've tried a variety of ways to keep them on, none of which have worked.  The only time he is okay with wearing them is when he's at home, where it's very quiet and safe.  That just won't cut it; especially as his hearing continues to worsen.  So we're pulling out the big guns, and buying him one of these.

That's right: once Connor's new earmolds come, he'll be sporting a lovely hat every time we're in public until he gets the idea that he can't pull his hearing aids out all of the time.  Actually, I guess it's more of a bonnet.  Apparently (according to our audiologist-- let me know if you can find the study) it's been shown that these particular hats have material that's thin enough to allow unobstructed hearing, and they don't cause any feedback.  They have a tie, which means Connor won't be able to get the hat off by himself.

Connor hates hats with a burning passion, so this should be a pretty good incentive for learning to keep his hearing aids in.  I'll do my part by keeping the hat on him and just feeling horribly guilty about the stress I'm causing my poor kid, even if it's for his own good.  I'll probably applique something to his hat to make it slightly more cool, but I doubt that will help Connor feel any happier about wearing it; even if I put a dinosaur on it. 

Oh well.

~Jess

In Which Connor Has Another Great Day

Connor had another great day today-- we did a lot of activities, including a trip to the park, a picnic, a visit to the mall, and some time building block towers, and he sailed through all of it like a champ.  He's been pretty mellow the last few days, which makes me wonder if his new medication is taking the edge off some of his anxiety.  Either that or his tolerance for stimulation has just increased substantially.  It's difficult to know what causes the little guy to act how he does on any given day, but whatever the cause, I'm liking the results!

We didn't make it to the library today to pick up our new activity box, so that's in the cards for tomorrow.  We'll also be headed to the audiologist (finally!) so that Connor can have some new earmolds made.  He's been so long without his hearing aids at this point-- over a month-- that I'm worried about how he'll react when he gets them back.  I guess we'll take that as it comes; hopefully he won't react too badly when it's time to start getting used to them again.  Maybe this new level of tolerance for stimulation will stretch to his hearing, too; we'll just have to see!

And so far so good as far as the seizures go; we haven't seen any breakthrough activity as of yet, which is really encouraging.  Tomorrow is the last day of giving the meds at the entry level; we'll be reducing the Trileptal and upping the Tegretol again on Wednesday.  Hopefully this will go well-- I'm expecting to see some more crabbiness, but with any luck he'll continue to remain seizure free.  Keep your fingers crossed for us!

~Jess

My monthly post is up over at Hopeful Parents!

~Jess

In Which Connor Blows Me Out Of The Water

Connor made some big strides today!

We've been swimming periodically throughout the summer, though not as often as I would have liked; the whole seizure thing has not been something I want to deal with in a swimming pool.  But since he seemed to be adjusting relatively well to his new seizure medication (other than a little bit of crabbiness) I decided that we would give it a shot today.

He did a fantastic job!

The pool was mostly deserted today, which was great.  I've found as a general rule that the best days to hit the pool are the cloudy days like today, because even though it's an indoor pool nobody thinks to go swimming when it's gloomy outside.  Because there weren't too many other families in the pool, Connor wasn't being bombarded with loud noises and splashing, so he was able to focus really well.

We've been working a lot on floating-- Connor used to panic when I'd tilt him back in the water, even if my arms were completely supporting every inch of him.  Today it only took him about five minutes to calm down and stop trying to sit back up, and after another five minutes he relaxed completely and I was able to slowly move him through the water on his back without him tensing back up.  I eventually was able, over the course of about half an hour, to get him to float with me supporting only his head and shoulders.  That's some pretty awesome progress! 

The big news, though, was his reaction to the fountain.  There's a large fountain on one side of the toddler pool that is shaped like a giant mushroom, and the water comes out the top of the mushroom and spills down the cap, forming a circular "waterfall."  There's about a foot and a half between the waterfall and the central pole of the mushroom which catches a lot of spray but isn't in the direct flow of the water-- just enough room for Connor and I to fit underneath.  When we first started coming to the pool Connor was petrified by this fountain.  I don't think it's the waterfall itself; he loves our shower, and it's a very similar type of spray.  I think it's all of the splashing that happens when the droplets hit the surface of the pool that he doesn't care for; he absolutely despises splashing, even when he's doing it himself, so a giant ring of splashing water is not exactly his cup of tea.

We've been working on desensitization to this fountain for months now.  Every time we go to the pool we make sure to go underneath the fountain at least once.  Usually I have to work up to it-- I creep towards the fountain at a snail's pace until Connor realizes what I am doing and frantically begins signing "no no don't want hate all done."  Then we freeze for a little while and I spend a few minutes reassuring him that he is a big boy, the fountain won't hurt, we will only go in once, etc.  Once I have him calmed down, I begin stealthily inching towards the fountain again.  Finally we get close enough that we can juuuuust feel the spray, which is when Connor screws up his eyes like the droplets of water are actually miniature daggers and tenses up his entire body so it feels like instead of a toddler I am holding a three foot long piece of 2x4.  We count to "three," move under the fountain, stay in the spray-filled area underneath for about fifteen seconds, and then move back out again and to the complete opposite end of the pool, where I spend the next twenty minutes praising Connor wildly and reassuring him that we are not going to go anywhere near that evil fountain for the rest of our swim time, while the little guy stares at me accusingly and signs "No Mommy.  Want Daddy."  Because Daddy would never, ever ever make him do anything so horrible.

Well, this time I was surprised by how quickly we managed to get up to the fountain from the opposite end of the pool-- Connor only shook his head "no" once or twice instead of every three feet.  When we reached the point of no return and I told him we were counting to three, he heaved a big sigh and squinted his eyes, but he didn't tense up completely.  We ducked under the fountain, and as we sat underneath in the spray I could feel his body vibrating.  For a moment I thought he was crying, but then I looked over at his face.

The kid was laughing.   I was stunned.

I didn't want to push him, so we stayed underneath for our usual fifteen seconds or so, and then went back through the waterfall and over to the other side of the pool.  I praised the little guy copiously, and we looked back at the fountain.  "More!" Connor signed.

So we went back under three more times-- the last time staying in the spray for over a minute.  Then we did a little more floating to round things out and I decided it was time to pack things up.  We were at the pool for over an hour, by far the longest we've ever stayed, and he did an amazing job.  Of course he was completely exhausted afterwards and had a major meltdown before he went to bed, so I might have pushed him a little hard, but overall it was a great day!

Today the pool fountain, tomorrow the world!

~Jess

In Which I Am Very Boring

This morning I went to Zumba, and I didn't even kick anybody in the head or anything!  I swear I'm getting good at this stuff.  And by "good," I mean "still gyrating wildly with no actual correlation to the rhythm of the music, but at least not hurting other people anymore."  Yeah!

Then I came home and mowed the lawn, because I am awesome like that.  And then I helped Jeremy clean off some of our decking boards so that we can stain them tomorrow.  After that we went off to a friend's barbecue, where we stayed until Connor announced it was time to leave by having a meltdown.  It was a close thing, but we got out of there just in the nick of time.

Tomorrow I'll be spending a large amount of quality time with our decking material, and probably also bungee jumping or paragliding or something.  Just kidding-- I'll be weeding the front lawn.  I live the most exciting life ever!

Though sometimes it's kind of nice to be boring for a change.  Even if it doesn't make for good blogging material.

~Jess

In Which We Do A Whole Lot Of Nothing

The original plan for today was to go to the zoo to look at the bird exhibits and feed the parrots.  However, after the events of yesterday I thought Connor and I probably needed a little less excitement than that sort of field trip would entail.  So with the exception of his physical therapy appointment we stuck close to home. 

I'm sure we'll hit the zoo on another one of our outings, though it won't be next week, as we'll be going to the Seattle Bug Safari instead.  Next week's topic will be all things creepy and crawly, which should be fun!  For me, anyway, as I like insects.  I promise not to post pictures of Connor with Madagascar Hissing Cockroaches or anything (no matter how cool I think they are) for those not quite as fond of many-legged creatures as I am.  I'm evil, but I'm not that evil. 

We started Connor on his new medication this evening, and so far so good.  The only possible side effect we've seen thus far is crabbiness, but that might also have been because it was right before bedtime and he didn't take a nap today.  So we'll see what the next few days look like.

Once Jeremy got home I spent a good portion of the evening catching up on household chores, reading, watching way too many videos on YouTube, and eating ice cream directly out of the carton.  I needed a day like that!

~Jess

In Which Connor Has A Seizure And Holds Up Traffic

This morning Connor had his neurology appointment to figure out what kind of new medication we would be adding to his regime.  The appointment was for 8:30 in the morning, and since we live about 45 minutes away with a normal commute and would be traveling through rush hour traffic, Connor and I left the house a little less than two hours before the appointment, figuring this would be plenty of time to get us there.  I totally didn't factor in the possibility of Connor having a seizure while we were on the highway into the mix, though.

Yes, Connor had a seizure in the middle of rush hour traffic on Highway 167.  Fun times.

We were in the far left lane when he started seizing (Rowbert, our van, has a handy mirror mounted just above our rear view that is pointed at Connor so I can see him while I'm driving) and I actually saw him slump over.  I usually keep one of his shoes off in the car when I'm driving by myself so that I can tickle the bottom of his foot to double check whether or not he's actually having a seizure or just messing around; his wheelchair is positioned in the middle of the van so his feet are within easy reach of my hands.  Sure enough, there was no response from him.  There was no shoulder on the left-hand side of the road-- just a barrier.  So I hit the warning lights and the horn, launched over two lanes and jerked the car to a stop on the right shoulder.  I hit the button to deploy the ramp as I was getting my seat belt unbuckled and ran over to the side of the car. 

Connor's face and body were already an alarming shade of gray, because even though he hadn't quite stopped breathing yet the safety harness on his wheelchair was keeping his torso almost completely upright, which meant that his chin was folded down onto his chest-- not the easiest of positions to get adequate air into one's lungs in the best of circumstances.  I unlatched him and quickly laid him down on his side in the soft dirt of the shoulder with the van between him and traffic.  About ten seconds after I put him down he stopped breathing altogether, so I rolled him over on his back and began mouth-to-mouth.  He started breathing again after about 30 seconds, and the seizure was over and he regained consciousness shortly afterwards.  The total amount of time from start to finish was about two minutes.

While we didn't end up needing the help, major kudos to the four cars that pulled over onto the shoulder with me-- one as soon as I hit the warning lights and the horn, and three more after they saw me pull the little guy out of the van.  One man handed me Connor's oxygen and let the other three know what was going on, one offered to direct traffic as needed, one ran up already on the phone with 911, and the last was ready to help out with whatever I asked for.  It's pretty awesome to have so many people, all probably on their way to work, pull over to help out.  If Connor had ended up needing the additional help, everything would have been already taken care of for me.  It's fantastic to live in a state with so many good Samaritans!

So at any rate, our trip to the neurologist's was rather delayed.  As we got back on the road, I called (via my shiny new hands-free device-- I had no desire to add a car accident to the morning's excitement) the appointment line to let the hospital know the circumstances behind why we were running late.  The woman on the phone informed me that if we were more than twenty minutes late for our appointment, regardless of circumstances, that we would have to reschedule.  Period.  Now, I am well aware of the fact that neurologists are extremely busy people and they see a lot of patients during the day, all of whom are there for equally important reasons.  We don't deserve special treatment.  But I believe there are such things as appropriate mitigating circumstances, and also I was on a major adrenalin high (doing mouth-to-mouth on my son on the side of a highway has a tendency to do that to me) and there was no way that I was going to turn back around and go home without seeing a neurologist.  I kept driving and called the nurse line to leave a message and let them know what the situation was.  The nurse called back while I was on the phone with Jeremy letting him know what happened, and she left a message saying yes, for goodness sakes we should come in no matter how late we were because the neurologist absolutely wanted to see us.  I was pretty glad I didn't take the appointment line lady's answer as the last word on the subject!

So we pulled in, and I wheeled Connor, who was in full postictal stage and thus extremely crabby and sleepy, into the hospital.  The check-in desk clerk, who I suspect had been taking lessons from the appointment desk lady, initially didn't want to let us check-in because we were more than twenty minutes past our original appointment (not that I blame either of them, as I'm sure it's hospital policy), but a quick call back to the neurology department fixed that issue pretty immediately, and we didn't even have time to walk over to the chairs before our buzzer was going off and they were ushering us back to get Connor's vitals.  The neurologist saw us less than five minutes later.

So that was great-- he talked about our options, and said that while he'd really like to refer Connor for a vagus nerve stimulator (VNS) pretty immediately the consensus after discussing the little guy's case with the rest of the department was that we need to try some more medications before surgical intervention, which made me breathe a big sigh of relief, as I'd much rather exhaust non-surgical methods first.  He said that based on the pattern we've been seeing with Connor's seizures, where a new medication works really well for a few months and then seems to lose effectiveness, that it's probable the little guy's body is forming an increasing tolerance for the medication and larger and larger doses are needed to do any good-- something that's not all that uncommon among children with unusual seizure disorders like Connor's. 

He also checked Connor's reflexes and responses-- this is the first time he's seen the little guy close enough to a seizure to be able to observe his postictal state-- and while I couldn't feel a difference in muscle strength between Connor's two sides this time, the doctor noted a major difference in Connor's reflexes on the left side versus the right.  Since this is the third seizure in a row in which Connor has had a weakness on the left side afterwards, the doctor said it's probable that we'll see this in varying degrees every time Connor has a seizure from now on.  Apparently it's common for children with complex seizure disorders to have changing symptoms as they grow older-- even when the type and trigger location of the seizure remain the same.  So we can expect that from now on he may be temporarily weak or even paralyzed on the left side for up to two days after a seizure, and there's not a thing we can do about it.  Fantastic.  At least it's not supposed to do any permanent damage, which is a very, very good thing, but I'm still not thrilled about this particular development.  Oh well.

At any rate, Connor will be coming off the Trileptal and starting a new medication called Tegretol-- which is in the same family of seizure drugs.  If this doesn't work, they've got two more medication combinations they can try, and then in the event that those don't do the trick our neurologist will probably start pushing for a VNS again.  We'll be weaning Connor down off the Trileptal over the next week at the same time we're putting him on the Tegretol, and hopefully it will be a relatively smooth transition, though we may end up with some breakthrough seizures.

So we walked out with a game plan, which was fantastic.  I went ahead and called Connor's occupational therapist and canceled our session for the day, as there was no way the little guy was going to do any meaningful work after a morning like that, and since the adrenalin had worn off I was sort of exhausted too.  But Connor still wanted his reward book (yes, he gets a new book every time he goes to the hospital for an appointment, which helps keep his outlook on hospitals relatively positive and also explains the ridiculous number of books he has) so we stopped off in the bookstore just down the street from the hospital and then headed home. 

Connor and I rounded out the afternoon by taking a four-hour nap, which was much needed.  After Jeremy got home I went off to the gym and exercised away some of the stress of the day, and now that I've written a post that is kind of ridiculously long, I'm off to bed.  That flight-or-fight response thing really wears me out.

~Jess

In Which We Birdwatch, And I Get Ticked At Some Other Lady

Today Connor and I took a trip to the Nisqually National Wildlife Refuge to do some birdwatching!  Our theme for this week is birds, so I thought it would be appropriate. 

Unfortunately, in order to see birds you have to be very quiet.

And Connor was actually not the problem.  He and I had a discussion about birdwatching before we got out of the car and started down the mile-long (wheelchair accessible) trail, and he knew that you had to be very quiet to get to see the birds.  So he was behaving beautifully; I was very proud of him.  Unfortunately, the woman who started down the trail directly behind us had not given the same instructions to her four children, who so far as I could tell had absolutely no excuses for not being quiet.  They were screaming, fighting with each other, jumping up and down on the boardwalk, throwing things off the side of the railing, and running all over the place.  So far as I could tell the mom simply decided that this would be a good place for a picnic and wasn't actually trying to see any wildlife at all, but the lack of common courtesy towards everybody else on the trail that was obviously trying to birdwatch was kind of stunning.

And I figure that I'm way, waaaay more tolerant than the average person about this sort of thing, because I have the kid who screams at the top of his lungs in the middle of restaurants and whatnot.  He actually did that later in the day when it was getting close to naptime; I'm pretty sure he shattered the eardrums of a number of very gracious people in the Urban Onion where we ate lunch.  So I try to subscribe to the "judge not" philosophy, because we get judged ourselves pretty often.  But really-- so far as I could tell these were completely developmentally on-track children, and their mom was simply making no effort at all to corral their behavior.  This sort of thing drives me nuts; and it was especially frustrating when Connor was making such an effort to be quiet, because believe me, it doesn't come easily to him. 

They effectively scared off any wildlife within about a 200 yard radius, much to my and all of the serious birdwatchers (of which there were at least two dozen of on the trail--you know, the type with the high-powered binoculars and the gigantic camera zoom lenses) chagrin.  They were also starting to rile Connor up, as he doesn't react to loud and rambunctious kids very well.  The little guy and I sat down on a bench and let the crew scream their way past us.  After about ten minutes of waiting the birdsong started up again, and this curious squirrel came down to see what we were up to.  He sat and talked to us from only a couple of feet away, much to Connor's delight.  He wasn't exactly a bird, but by this point any wildlife was good wildlife as we'd been half a mile down the trail and, thanks to the screamers, had seen exactly one robin. 

We had better luck after that; neat birds we saw included various types of warblers, sparrows, swallows, finches, bushtits, hummingbirds, shorebirds, and even a Great Horned Owl, who was cozied up in the hollow of a tree.  We also saw a rather large raccoon who was draped out over a branch snoozing in the sun.  So we got the chance to learn quite a bit about the habitats of different birds, and Connor even got an impromptu lesson in birdwatching from a nice elderly gentleman out on the trail.

So despite a rough start, all in all it was a pretty great trip! 

~Jess

In Which Connor's Neurologist Calls, And We Are At Our Next To Last Resort

So we heard back from the neurologist today.

Not fantastic news.

Connor is maxed out on his current seizure medications.  Currently he's taking Keppra and Trileptal, which have been really nice because he's had zero side effects from them.  However, they just aren't controlling Connor's seizures effectively, and the more of them he has the greater possibility we have for him to sustain brain damage due to the whole not-breathing thing.  Currently Connor's seizures are falling into a pattern where he has one about every ten to fourteen days.  He's had nine in the past four months, and during those four months his seizure meds have been upped six times.

So the neurologist is going to try adding a third seizure medication.  I'm not sure exactly what medication that will be yet-- we'll find out at his appointment this Thursday (made today; normally it's at least a month waiting time for an appointment, but they aren't messing around with him).  And unfortunately, if this third medication doesn't work the plan is to refer him to what they call the "Epilepsy Program."

That would be the program with the neurosurgeons.

Connor probably isn't a candidate for the traditional brain surgery for partial seizures-- where they remove the part of the brain where the seizures start.  This is because Connor's seizures start in the brainstem, which is kind of essential for various things like, oh, breathing.  Now I'm not a neurosurgeon by any means, but since the whole not-breathing thing is the reason the little guy's seizures are such a big deal in the first place, it might be a good idea not to give him any more reasons to not breathe. 

However, he might be a candidate for a vagus nerve stimulator, provided his cardiologist doesn't think it would interfere with his heart function.  You can read more about what exactly a vagus nerve stimulator is here, if you are so inclined. 

But I'm really, really hoping that this third medication does the trick, because quite frankly even though it isn't technically brain surgery I'm not excited about the idea of Connor undergoing a surgical procedure to implant a device that's going to be shocking his brain on a regular basis.  For one thing, the little guy has already been through so many surgeries.  If he had this done, he would have to have surgery again every six years to replace the battery and every twelve years for a replacement device, and any time Connor goes under anesthesia there's a risk.  For another, this is such a new treatment, and doctors aren't sure why it (sometimes) works.  Connor's extremely young to have this sort of surgery done; most of the studies have been done on patients twelve and older.  The brain is a mysterious thing in typical people-- let alone a kid like Connor.  And the thought of having an experimental surgical procedure done on him with no real guarantee that it will help makes me have this kind of knee-jerk terrified reaction.  Seriously-- just thinking about it makes me hyperventilate.

But if this next medication doesn't work, we may be out of other options.  If Connor's seizures quit responding to medicine, having an implant that only has a 40-60% chance of helping stop the seizures would still be better than not having the implant and having a 100% chance of continuing the seizures.  And if that's where we end up going, well, I'll suck it up and get over it, because we need to do what's best for Connor and not what I'm most comfortable with. 

Let's hope it doesn't come to that.

~Jess

In Which We Have A Not-Fun Day

Connor and I were going to go swimming and run a bunch of errands today, but instead he had a seizure.

This one was about three and a half minutes long, and I had to do mouth-to-mouth for about forty-five seconds of that.  He didn't end up with any paralysis this time, but his left side was much weaker for a few hours afterwards.  Luckily he spent most of that time sleeping, so it didn't freak him out too much.

Actually, for the first two minutes or so of the seizure he was totally lucid-- he was making noise, responding to questions, etc-- and he wasn't upset about it at all.  We've explained his seizures to him many times, and I think that he's had so many by now that they aren't really scary to him anymore.  I'm glad that his seizures don't terrify him any longer, but at the same time it makes me a little sad that he's had so many they've become commonplace to him.  He's lived longer with the seizures now than he has without them, and he probably doesn't remember a time when he hasn't had them. 

I don't think I'll probably ever get used to them, though-- at least the part where he stops breathing.

At any rate, he slept well through our swimming time and then the lunch hour.  When he woke up he seemed to be in a relatively good mood (though he was still fairly weak on the left side) so I decided to try a quick outing to the library, which turned out to be a mistake.  He had a total meltdown after about ten minutes.  And normally he loves the library.  It's quiet, it has books, and also the children's section has these awesome LED stars on the ceiling that he absolutely adores.  So if he was having a case of the screaming meemies in the middle of the library there was absolutely no way we were going to make it through the grocery store or any of the other errands I needed to do.  We went back home, where he took his second nap of the day and I spent the time doing laundry.  I hate doing laundry.

Bleagh.  I'm glad this day is over.

~Jess

In Which I Get My Birthday Present Way Early

Okay, so I lied.  Pictures tomorrow of the bulletin board-- I forgot to take any before Jeremy and I left on our date.  Whoops.  But in my defense I was excited about the date, because I knew I was probably going to end up with my birthday present from Jeremy a month early.  So sorry about that.

Anyway, we've been doing a lot of cycling on dates recently, but we've had to stick to only one trail-- the one right next to the bicycle rental shop-- because I didn't actually own a bike.  So today we went down to the shop, which sells and repairs bikes in addition to renting them, and I got to walk out with a shiny new bicycle of my very own!  It's a hybrid, and by far the most sophisticated bike I've ever ridden, by which I mean it has actual gears (24 of them!) and everything.  I have yet to get any of the bike gear, other than the helmet and the little pouch that straps onto the bike and holds my repair kit and wallet and whatnot, but I'm sure that will come in time.  Biking has a ton of accessories, it seems, and if we're going to be doing it a lot I'm probably going to want a few of them.  Like some of those crazy bike pants-- you know, the ones with the chamois, or as I like to call it, the bubble butt.  For today I just borrowed some of Jeremy's and went in a regular workout top.

Okay, and just so you know, those bike shorts feel really weird. 

Anyway, we took our bikes down the usual trail today, but we have big plans for hitting other trails in the area on future dates.  I think the next trail we'll probably tackle will be something on Vashon Island-- we've never been there and I've heard it's a good lazy-summer-day sort of place!  Except for all the Giant Hills of Death, of course.  Maybe we'll try something, um, flatter for our next summer day and work up to Vashon.

It's really nice to have an activity that Jeremy and I both enjoy to do on our dates-- other than the usual bookstore and coffee shop thing.  And yes, of course we did that too-- do you even have to ask?  We're tossing around the idea of getting Connor one of those little kid trailers so we can take him with us, but we're a little worried about how we'd keep an eye on him while he's inside-- I have a hard enough time balancing on the bike while I'm looking forward, let alone using one of those helmet rear view mirrors!  So we'll see what we come up with.

In the meantime, Jer and I will enjoy hitting the trails-- just the two of us.  An early "happy birthday" to me!

~Jess

In Which We Make Connor An Activity Board

Today Jeremy cleaned our entire house.  I'm talking from top to bottom-- he even mopped the floors. 

Do I have the best husband in the world, or what? 

I spent most of the day out playing, but I did get one slightly organizational thing done-- I made Connor an activity board.  Pictures tomorrow (Connor is asleep in his room right now so I can't take any) but basically it's a magnetic white board with two large rectangles drawn on it in permanent marker, labeled "today" and "tomorrow."  I considered drawing out an entire week, but Connor's sense of time isn't so hot, so I figured we'd stick with just those two days for now.  Connor has a hard time with deviations from routine and he likes to know what to expect, so I figure this board will be really helpful for him; especially during the summer months when his days don't have the reassuring routine of school.  I have a number of picture cards that have symbols for different activities, and also a trusty black non-permanent marker to draw pictures directly on the board of things outside our norm.  I've hung the board at wheelchair eye-level for Connor so that he can see what I've posted on it every day, and we'll add changing the board and going over the day's activities to our morning routine.  In the evening we'll go over the next day's activities so he knows what to expect. 

Hopefully this will help him with some of the transitions he's been having difficulty with.  I think that even if we do end up changing our plans he'll at least have the comfortable knowledge that the basic parts of his daily routines will stay the same.  It's worth a shot, anyway.

The other half of the board is a brown bulletin board, which I bought some colorful push pins for.  I'll have to think of something else to use when Sylvie gets here-- probably I'll just get a full white board-- but for now I'm not too worried about the push pins, as Connor isn't going to bother them.  I've hung up some of Connor's latest artwork on the board at his eye level so that he can see how proud we are of his creations.  He seemed to like that quite a bit; he kept eyeing the large finger painting he did last week and smiling. 

I think anything we can do to nurture his creative side is a good thing!

~Jess

In Which Connor And I Moonlight As Mall Walkers

Today Connor and were originally planning on meeting up with some of his Deaf friends at the park, but instead we spent six hours at the mall.

I am totally not exaggerating, either.  We got there about 10:00 in the morning and stayed until 4:00 in the afternoon.  I don't think I've ever spent that much time in a mall in one stretch.  Oh wait-- except for last year, for the same reason.

Air conditioning. 

It was another scorcher today, and Connor didn't develop more effective sweat glands overnight or anything, so we had to stay out of the sun and in temperature-controlled environments.  Which meant no park.

Since the only places in the local area that have the blessed cooling machines are either retail or government buildings, that's what we were limited to.  While I wouldn't mind hanging out at, say, the library for six hours, Connor might have some extremely loud things to say about that (just because he's non-verbal doesn't mean he can't get his point across at top volume) so we needed somewhere with a few more distractions.  I decided, though, that if we were going to hang out in a mall for six hours it better at least be one with a bookstore in it.  So we drove to Tukwila and hit the Westfield Southcenter Mall.  It happens to be the largest shopping mall in the Pacific Northwest, so there was plenty to do. 

And oh, boy, did we have fun times.  First we made a full circuit of the mall, which took us a while as it has three floors.  Then we visited the bathroom.  Then we looked for some cute magnets for Connor's bulletin board, and didn't find anything.  Then we did another circuit of the mall.  Then we visited the bathroom again.  Then we looked for a cute hat for Connor and didn't find anything.  Rinse and repeat.  For six hours.

I am not really a mall shopping sort of person to begin with.  But Connor was actually having a blast-- mostly because they have really big skylights in the middle of the mall.  He loves skylights.  So I gritted my teeth and we continued doing circuits.  I figure I can count it as my exercise for the day.

We did end up making one major purchase-- a new set of clothes for Connor.  I decided to treat him and we ate at the Rainforest Cafe, which has neat animatronic animals that you pay through the nose for when you actually order food.  They also have giant aquariums full of colorful fish, which I (correctly) thought Connor would get a huge kick out of, so we requested seating right next to one.  He loved the place-- especially the giant mechanical butterflies-- so the elevated lunch prices were worth it. 

I got a half of a chicken salad sandwich (for me), a cup of tomato soup (for me and Connor) and a glass of chocolate milk, which was also supposed to be for Connor, though originally he didn't really want it and then later he became a little more intimately acquainted with it than he would have liked.  By which I mean that I accidentally knocked the almost-full glass over rather violently and it landed directly on his chest, soaking his shirt completely before ending up in his lap.  Connor then spent the next twenty minutes adding to the jungle ambiance of the restaurant by emitting ear piercing shrieks that luckily sort of blended in with the parrot sounds while I tried to dry him off as best as I could.  Since he'd already used up the extra outfit I always store in the car and it was now the hottest part of the day outside, I ended up buying him another shirt and pair of pants from the closest children's store we could find.  Luckily they were having a sale.

Just a couple of weeks ago I spent a bunch of time whining about all the rain we were getting, so I guess you could say I'm getting my just desserts now.  But I'm going to whine about the heat anyway. My bank account won't like too many more days as hot as these have been-- some of those stores were looking really tempting by the end of the day.

I think I'm ready for fall. 


~Jess

In Which It Is Way, Way Too Hot

Today's defining quality was that it was hot.  It hit the nineties, which wouldn't make me blink in Texas where everyone had air conditioner, but is an entirely different matter here.  We had record-breaking temperatures today, and there's a hot-weather advisory in effect through Friday evening.

Connor does not do so well in hot weather.  He kind of gets all melty around the edges; he's usually really tired and just wants to snuggle but it's really too hot to do that, so he ends up pretty crabby.  Today was no exception to that rule; he perked up a little bit in occupational therapy today but otherwise spent most of his awake time rejecting all of his toys and miserably drooping over onto my lap.  He took a three hour nap-- and naps in which actual sleep occurs are about as common as unicorns in our household these days-- and was already telling me he was tired when I left him with Jeremy around 6:30 in the evening to go work out. 

I was feeling a bit melty myself by the time I got home; I did step class and yoga, and while there were fans going full blast in the YMCA it was still pretty steamy.  After a quick shower I ended the night at a coffee shop attempting to write some poetry and not having much luck-- the heat seems to have sucked all the motivation out of me.  Oh well.

We have to keep little guy indoors as much as possible in this sort of heat; his temperature regulation issues make this sort of hot weather really dangerous for him because his body doesn't get rid of the heat effectively.  So we'll probably spend a good portion of tomorrow tooling around various department stores, which won't be terribly fun for him but will at least keep him cool!

~Jess

In Which Connor And I Are Headed South, And We Need Your Input

Connor and I are planning a big trip!

The first week of August, he and I will be traveling down through Oregon and California all the way to La Jolla for a family wedding.  Since plane flight is impossible right now due to Connor's seizures, we've been tossing around ways to get there.  Originally we were looking at taking the train and then renting a wheelchair van, but there's no direct train all the way there-- we'd have to change trains and also, for a portion of the trip, ride a bus.  The prospect of hauling around three days worth of Connor's g-tube supplies as well as all of his other medical equipment through that many changes doesn't sound really appealing, and that route isn't very cost effective either.

So today I sat down and took a good hard look at the drive.  It's about a 21 hour trip from start to finish, but Connor and I don't have anywhere special to be, so we're going to break it down into short runs.  The biggest issue is the possibility of him having a seizure somewhere out in the middle of nowhere, but I've found a route that has us sticking to pretty major cities and doesn't involve long stretches of driving through desolate areas, so I think we're going to go for it!  Because it's the summer and we don't have a lot of obligations other than therapies, I think we're going to make it an adventure and take our time; Rowbert the Traveling Van can hold all of Connor's supplies for the trip easily.  So here's our tentative itinerary:

August 2nd: we'll leave Puyallup and head down to Medford, Oregon
August 3rd-4th: Monteray, California (we'll probably stay at least a day here, as we have friends in this area)
August 5th-7th: La Jolla, California (the wedding is on the 7th, and we'll leave the morning of the 8th)
August 8th: San Francisco, California
August 9th: Medford, Oregon
August 10th: home again home again, jiggity jig!

I've never seen California, so I'm pretty excited about getting the chance to do some sightseeing!  And while the time we're in La Jolla is set in stone, the rest of the trip is pretty fluid; we could leave as early as August 1st and come back home again as late as August 13th.  I'm not sure our budget would spring for hotel rooms for that long though, so we'll probably keep closer to the schedule above.  It would have us in the car for seven hours a day, which is a pretty leisurely pace and would give us some time to sightsee and stop to visit along the way.

I'm telling you all this because, dear readers, some of you are much more intimately acquainted with California than I am-- and since I have never been to California this doesn't take much.  What does Connor absolutely have to see?  Are there some good wheelchair friendly hotels you all can recommend?  Anywhere we really need to avoid?  I need your advice!


~Jess

In Which Connor Gets His Teeth Cleaned, And Feeds A Goat

Wow, what a busy day!

First I'll tell you about the not-so-fun part.  Connor had his dentist appointment early this morning; because of his genetic condition we see the pediatric dentist every six months.  Connor has a number of issues with his teeth and palate-- he has, among other things, microdontia (his teeth are too small), very widely spaced teeth, an extremely high arched palate, and the big one: amelogenesis imperfecta of the primary maxillary central incisors.  Basically what this means is that the enamel of Connor's two front teeth didn't develop properly.  Those teeth are shaped differently than typical incisors (they're much, much smaller and look like they have a couple of chunks taken out of them) and are a different color than typical teeth: kind of a carrot orange.  They are also really temperature sensitive, which explains why Connor hates ice cream.  Because the enamel on those teeth is extremely weak, we have to have them painted with fluoride every six months to strengthen them.  So that was the plan today.

The dentist took a quick look at Connor's teeth; thankfully since they are so widely spaced and small (and also because he doesn't chew anything) he didn't need any sort of major cleaning.  So she just painted his teeth, which was an ordeal in itself.  The poor little guy ended up with a couple of "rug burns" on his face because he kept trying to jerk around while the dentist had her hands in his mouth, and despite her being very quick he was in tears by the time the painting was over. 

At least he got a balloon out of the deal.

So on to the fun part of the day!  We went straight from the dentist appointment to the playground, where Connor got to go on the slide multiple times and also get pushed on the swings; a pair of activities that banished all of those tears immediately!  Then we headed to the library, where we picked up a big box of farm animal books and activities for the week.  And to kick everything off with a bang, we drove straight from the library to the farm!

We had a friend graciously offer us the run of her place as an educational experience (and she fed us lunch, to boot!) The main attraction was the goat barn, where a pair of kids was waiting to be bottle-fed, but when we got to the barn we discovered a special surprise; it turns out there were four kids instead of two!  One of the does had her babies just before we arrived-- they were probably less than an hour old when we got the chance to see them.  Talk about cute!

Connor was pretty enamored with the goats, and the baby goats liked him quite a bit too.  Or at least they liked his pants, which might have had some formula spilled on them earlier in the day.  The little brown goat kept trying to suckle off of them, which made Connor a little bit nervous, as you might imagine.  That's why the first picture on here is all blurry-- Connor is gyrating wildly as the goat tries to hold on to his pants.  It made picture taking a bit hard!

But we got things sorted out soon enough, and while he didn't want to hold the bottle Connor did gently pet the babies, which was great!  Then we upped the ante and stuck him in the hay feeder.  The goats weren't quite sure what to make of him, and he wasn't really thrilled with the idea either, but hey, it was good sensory work!  After that it was time for a break, and we sat and watched a couple of goats getting milked.  Then finally Connor got to pet one of the does who was waiting to be milked-- he even got to touch her udder! 

So the day ended extremely well, and it was fantastic for me to get the chance to catch up with an awesome friend while Connor had a learning experience.

And did I mention there were baby goats?  How could we possibly go wrong?

~Jess