In Which We Will Do All The Driving

Tomorrow will be The Day Of The Medical Clinic Tours for me and the little guy, so I'm going to keep this short.  We need to leave here by 5:45 am to be able to make it through rush-hour traffic Connor's neurology appointment in Seattle.  Once it's over, we'll be headed to the pharmacy at the hospital on post, as one of Connor's new medications can only be picked up there if I don't want to have to pay for any more of it out of pocket.

  Then we need to stop by Connor's doctor's office in Puyallup to pick up the paperwork that allows the nurse to administer Connor's new medicine in school.  He needs it four times a day, and I really would rather not have to come in and give it to him every day if I can help it.

Not only is it kind of disruptive for the class, but it's a twenty-five minute commute each way.  So it eats into my important Sitting-Around-By-Myself-Eating-Chocolate time, and obviously we can't have that.  I'll be attending an adoption seminar on Friday, so I've got to cram all this stuff in tomorrow.

So basically it's going to be a whole lot of driving around to various waiting rooms.  Huzzah!

At least today was pretty good for all parties involved.  Connor had his feet measured for new AFOs, and Eden did quite a bit of studying for her classes.  I spent most of the day on the phone coordinating various appointments and running around trying to get the medication issue straightened out.  I can't say that I had a particularly good time doing it, but at least I accomplished some things, which always feels nice.

I'll be glad when things settle back down a bit, though!

~Jess

In Which I Have Trouble With Needles

Today was another day for reorganizing and cleaning; I'm the kind of person who likes to cram things in random drawers, so sorting it all out is taking a while.  It's a project that I do a couple of times a year and it needed to be done regardless of whether or not we were adding a new person to our household, but the adoption is a good excuse to motivate me to buckle down and make it happen. 

I cleaned out our medicine cabinet today, which is something that hasn't been done since before Jer was injured.  Cleaning it out was the easy part-- discarding everything turned out to be way more of a project than I anticipated.  It turns out that none of the local pharmacies or hospitals take expired medications, and several that I called and asked had no idea where I could take them. 

I finally called up Connor's doctor's office and asked their pharmacy, and they told me the police station had a drop off box for them.  So I took them down and they were more than happy to take everything except for our injectable drugs, like Connor's expired EpiPens.  They had no idea where I should take those.  Sigh.

So after a lot of phone calls and research, I think that I can take his EpiPens to the local fire station and they should be able to accept them.  I think.  I'm going to call ahead first just in case.  At least I've got everything else out of the house.

Ten days!

~Jess

In Which Connor Is On Strike

Connor stayed up until past four again yesterday, and it looks like he's headed that direction again today.  So I apologize if today's blog is less-than coherent.  Luckily our night nurse is on duty this evening, so I'm going to actually get some sleep.  He napped in five-ten minute intervals during the day, so I couldn't really catch up.  I think it's probably the medication change that's throwing him off in a major way.  He's definitely becoming way more awake and alert as we continue to lower his keppra, but this is a bit too much of a good thing!

Thank goodness for night nursing!

Needless to say we didn't do a whole lot today.  I'm pretty sure that all the information I heard in my Thai class went in one ear and right out the other, but hopefully I retained a bit of it somewhere in my subconscious that will stick.  I'm actually kind of amazed I didn't fall asleep in class!  It's pretty interesting subject material though, so that helps a lot.

We worked on some phrases today, which will hopefully be really helpful on my trip.  I'm slowly gaining enough of an ear for Thai pronunciation so that I can at least hear when I'm saying something wrong.  Thai is a tonal language, so if you change the pitch in which you say a word it can change the meaning.  It has several consonant and vowel combinations that we don't use in English, so I'm still struggling to figure out how to make those sounds. 

My Thai accent probably won't ever be perfect, but hopefully over time I'll be able to improve enough to make myself understood.  I've been listening to a lot of Thai stations on my Internet radio that Jer gave me a few years ago, and I think that's helping.  On one of the stations they have a daily program that teaches English to Thai speakers, and I tune into every once in a while.  I figure it's something Ellen and I might be able to listen to together, since we'd both get something out of it!

Anyway, thankfully our night nurse has now arrived and I'm off to bed.  Hooray!

~Jess

In Which Connor Stays Up Forever

My brain is fried right now!  Connor stayed up until 4:30 in the morning yesterday, and he's showing every sign of doing it again tonight.  I think it might be related to his medication-- we just decreased his keppra again.  Unfortunately this month's reduction corresponds with our night nurse's weekend.  I'm going to have to drink a lot of coffee before my Thai lessons tomorrow or I'll probably fall asleep during the middle of things.

So I'm having a bit of trouble forming coherent sentences right now.  Thankfully our night nurse will be back tomorrow night and we can hopefully all get a bit more sleep!

~Jess

In Which Connor Has A Cold And It's Awesome

Finding out the fantastic news about our adoption wasn't the only fantastic thing that happened yesterday!  Connor had a neurology appointment, and that went really, really well.

His neurologist was thrilled to hear just how well the little guy has been doing in the past few months.  During August and September, he's only had four seizures total and three of those were during an illness.  That's amazing.  The incredible change in the frequency and severity of his seizures that we've seen since Connor started taking Zonegran and we received the anhidrosis diagnosis has been dramatic.  He hasn't had a single seizure where he's completely stopped breathing since 2011, and while we've still had to use oxygen his seizures in general have been less virulent-- we haven't had to use Diastat since June! 

I got the impression that it wasn't at all what our neurologist was expecting; he told us at an earlier appointment that once you've tried more than three or four seizure drugs the odds of finding one that will work are pretty abysmal.  I'm glad that we've found a medication that, while it's not stopping the seizures entirely, is greatly improving Connor's quality of life.

So not only are we going to see the neurologist in six months rather than our usual four, but we're going to start trying to work down off of one of the little guy's seizure medications!  He's been on Keppra since he was first diagnosed with seizures, and we're going to start very slowly working him down off of it.  He was taking  eight milliliters twice a day, and we'll be going down to seven this month, six in October, and so on and so forth until we discontinue the medication entirely in April. 

Obviously if Connor's seizures pick back up we'll bump his medication back up, but we're really hoping things will go well and he'll have one less medicine with potentially nasty side effects that he needs to be on.  Keppra tends to be one of those medications with a sedative effect, so the neurologist said we might expect Connor to become more alert and aware of his environment as the levels in his system go down. 

The little guy tolerated the appointment reasonably well, considering that he has a nasty cold right now and is grumpy and sleepy and sniffly as a result.  It's actually been really exciting for me to see him have a cold-- though that sounds kind of weird-- because that's all we've been seeing.  He started popping a fever initially but we've been managing it well with Tylenol, so we've seen no seizures.  We're not in the hospital.  We haven't seen a whole bunch of mysterious symptoms that turn a cold into something much more complicated.  It's not four different diseases at once.  It's just a cold.  This is the first time I can remember in a long, long time that I can say that.

Hooray for colds!  Or at least, hooray for just colds.  Now if only I can avoid getting it too.  I'm not so excited about this cold that I want him to share!

In Which Connor Wasn't Sick And I Sew Some More

Connor started out feeling pretty punky this morning, but he slowly improved as the day went on.  I mentioned yesterday that he wasn't feeling well, but I didn't tell you all why.  Without going into too much detail he wasn't sick; we had a substitute night nurse this week. The week didn't go well from a nursing-care standpoint for a variety of reasons, and the problem culminated yesterday when the nurse accidentally left Connor's g-tube intake valve open, assumed his seizure medication had immediately run back out it and decided to just give him another full dose of Keppra. 

By the time I found out about it, enough time had gone by that he'd already absorbed the medication and emptying out his stomach wouldn't do any good.  So Connor spent all day yesterday acting like he was sedated, and I spent the day hovering to make sure he was still breathing and/or not slipping into a coma, which can happen when you overdose on Keppra.  Fun times.

Needless to say, I called the nursing service and we will not be seeing that particular nurse at our home again.  I will be very, very happy when our wonderful regular nurse is back next week. 

So it's taken quite a bit of time for the drug to work its way out of his system and he was still a bit loopy this morning.  However by the end of the day he perked up and seemed to be feeling much better.  We even got out to a few local stores, though we kept it pretty close to home. 

I spent the time he was sleeping it off working on the butterfly Christmas stocking, which is coming along nicely.  I have the first butterfly done and I'll be starting on the second (of seven) tomorrow.  I had no idea how much I missed sewing until I started getting into this project in earnest; it's very relaxing and I'm able to let my mind wander while I'm working.  I also forgot just how much I love seeing a project I can picture in my head come to life in fabric.

Of course, I wasn't really excited about the reason I had all this sewing time, but oh well.  The project will probably slow down a bit after today until Connor's in school again, but that's okay because I'd much rather Connor be active and awake than conked out!

~Jess 

In Which Connor Tries On Polka Dots Again

My sweet little boy slept in until well after 11:00 this morning, and I figured he was mostly on the mend.  He was pretty fussy when he did wake up, but I thought that he was just to the point where he was feeling well enough to get cranky, if that makes any sense.  I left the little guy conked on a pallet next to Jer in the dining room and popped out to not one, but two bookstores because whenever Connor gets sick I run completely out of books and I needed to restock.  Also I wanted the next book in a series and the library's copy has been out for four months, dang it.

Connor spent the whole time I was gone fully clothed, under a blanket and snoozing peacefully away.  When I got home I figured he probably needed a diaper change, so I got everything ready and went to wake him up.  I rolled him over gently.  "Does his face look a little swollen to you?" I asked Jer.  We turned on the overhead light and discovered a bunch of tiny red dots scattered around his hairline and down the temple on the side he'd been sleeping on. 

I took off his blanket and discovered more red dots on his arms.  I lifted up his shirt and groaned.  The kid's torso was covered in hives.  So was pretty much all of the rest of the skin on his body except for the side of his face that had been turned up while he was sleeping.  Whee.

So apparently we can add yet another class of antibiotic (cephalosporins) to the growing list of medications Connor is allergic to.  We plugged the poor, miserable itchy little guy full of Benedryl and rang up the doctor on call, who told us to discontinue the antibiotic and head into the clinic first thing tomorrow morning.  While ear infections are usually the kind of thing we could potentially just wait out with a typical kid, it wouldn't be too great for Connor to go a week or more with a fever so we'll probably be trying something else.  Also it was apparently a pretty nasty infection, so the wait-and-see approach might not have worked so well for him anyway. 

Connor seemed a bit more comfortable after the Benedryl kicked in, but of course it knocked him out even more so he spent most of the rest of the day sleeping, either on his pallet or in my lap, where I'm sad to say he doesn't fit very well anymore.  And once we get home from the doctor tomorrow, he'll probably spend most of the rest of the day with me too.  He's still relatively pint sized, but with the way he's been growing I don't think that will last too much longer.  So I've got to get my snuggles in while I can.

I'm ready.  I've got six new books and I'm restocked on chocolate.  Bring on the snuggly day.

~Jess

In Which Connor Finds Some More Polka Dots

So yesterday Connor started breaking out in what I thought was a mild case of hives.  He'd been throwing up a lot, and sometimes when he gets sick he ends up with a bit of a skin reaction.  So I was a bit unprepared when I walked in his room this morning to discover that he was completely covered, from feet to nose, in a morass of raised, bright red spots.  When a hefty dose of Benadryl failed to have an effect, I loaded him in the car and we were off to the doctor's office for the fourth time in the past three weeks.

I am getting really tired of going to the doctor's office, by the way. 

Anyway, they took one look at him and told me that he was sporting a textbook case of sulfa allergy rash.  Apparently he's developed an allergy to Bactrim, the antibiotic he's been on for the last ten days to treat his impetigo.  This explains all of the vomiting we've been seeing too.  Luckily today was the last day he was supposed to be on it anyway, so we're just missing one dose of the medication and hopefully his impetigo is gone.  It's kind of hard to tell right now since the kid currently looks like he's been splatter painted with red ink. 

So now Connor has a whole new class of drugs to add to his Avoid At All Costs list, along with amoxicillin and colace (and lavender of course, though that's not a drug).  I'm really glad that I decided in the end to take him into the doctor; I really debated about whether or not it would be beneficial when I figured it was a case of hives and there's nothing they could do.  I was right about that part-- the poor little guy just has to wait out the effects-- but once you get a reaction like that the allergy tends to really ramp up the next time you are exposed to the drug, and so if Connor had gotten his evening dose of Bactrim tonight things could have been really, really bad. 

So we returned home with instructions to watch Connor over the next day and make sure that he doesn't start having airway issues, and to keep dosing him with Benadryl to help with the itching and burning he's probably feeling.  We're supposed to get as many fluids down him as we can to help flush the drug out of his system.  The doctor said that hopefully the rash will be gone in three or four days.  The Benadryl is making the little guy drowsy as all get out, and he spent the entire rest of the day asleep.  I have to say that's probably for the best-- he looks extremely uncomfortable while he's awake. 

He's just been having a rough time of it lately!

~Jess

In Which Connor Creates Laundry And I Am A Bad Mommy

Hi again!

Our Internet is blinking off and on right now, and it's driving me nuts.  I shouldn't complain too much though-- there are still about 50,000 people in the area with no power.  A little forced down time with my books isn't going to hurt me any, though I'm not sure I'll ever get caught up on e-mail.

Instead of school this morning, I took Connor in to get his potassium levels checked, as he's become increasingly nauseous and fatigued over the past few days and is now gagging at the drop of a hat.  This is not particularly pleasant for any of the parties involved, except maybe the water and power companies. 

I've been running my washing machine a lot.

Anyway, it could be that Connor is coming down with yet another GI bug, it could be a side effect of the antibiotic he's on, or it could be that the antibiotic is reacting with one of his heart medications and driving his potassium levels way up.  So we went in to rule out the potassium, which is the only one of those that could potentially be really serious.  The lab at our doctor's office is still recouping after a week without power, so his sample had to be sent out.  We'll find out tomorrow morning what his potassium level looks like.

Connor did not have a particularly good day.  Not only did he end up having to be stuck multiple times on both arms before they could get a sample, but he also had five seizures.  This makes me lean towards the GI bug theory on why he's throwing up a bunch, but heck, everything lowers this kid's seizure threshold so it's not exactly conclusive evidence.  I was persona non grata today due to the Multiple Needle Poking That Mommy Didn't Stop Incident, so instead of napping on me like he usually does after a bunch of seizures he had a meltdown, told me I was a "Bad Mommy" and asked for Jer until he fell asleep on the couch. 

Fun times. 

I read him a bunch of books after he woke up and he forgave me.  He never holds much of a grudge, thank goodness.  Otherwise doctor's office visits would be significantly more difficult by this point. 


~Jess

In Which Connor Is Fitted For Some Wheels And Has A Flair For The Dramatic

Connor had a pretty busy day today!

We woke up to about three inches of snow on the ground, and we're supposed to have a whole bunch more tomorrow-- up to twelve inches in what could apparently end up being the worst snowstorm here since 1985.  Connor's school was canceled this morning, so he got the chance to sleep in. 

And yes, I know that for all you hardcore Canadians and Easterners, a foot of snow isn't all that bad.  But nobody here is exactly prepared for that amount of snow, so people are completely freaking out about it. 

Anyway, we braved the snow this afternoon and drove down to the local hospital, where Connor had measurements done to convert his chair for long sitting (where you sit with your legs straight out from your body) so that he'll be stretching out his hamstrings whenever he sits in it.  Then we talked about getting him an adaptive floor sitter too, so he can play down with his friends whenever he has a play date.  And then finally it was time to talk about ordering his new adaptive tricycle!

Connor's long outgrown the Radio Flyer trike that we modified for him a couple of years ago-- his knees are all up around his ears if we try to put him on it.  Since it's pretty well impossible to find a bigger bike that will adapt well to modification, it's time to switch to a bike made specifically for children with special needs that will grow with Connor as he gets older.  It's practically the only physical activity that really motivates the little guy to work hard-- he loves riding and when we tried out a bike at the hospital today he was actually able to start it moving forward by himself!  So we'll be ordering him a trike from Rifton.  I'll let you know how it handles when it comes.

Shortly after we got home from our appointment I got a phone call from Connor's doctor.  The cultures they took of his impetigo came back positive for both a strep and a staph infection, because the little guy doesn't do anything by halves.  Also one of the infections cultured as resistant to the antibiotic we've had him on. 

Bactrim, the antibiotic that did wipe it out and thus is the one we're switching to, could potentially interact with one of Connor's heart medications and give him hyperkalemia (high potassium levels).  Normally that side effect only happens if someone is on the medication for a long period of time, so it's not very likely it will be a problem because Connor only has to take it for ten days.  They're being really cautious though, because hyperkalemia can do some really, really nasty things, like, um, stopping your heart. 

So when we picked up the Bactrim we also got a baseline potassium level drawn, and while he's on it we'll be checking Connor's pulse rate at least once a day and taking him back in for another test if it starts getting slow or irregular, and also if he starts throwing up a lot or seems really weak or tired.  Whee!

Seriously, it's like living with my own miniature soap opera, only with fewer serial killers and alien abductions. 

~Jess

In Which I'm Loopy From Sleep Deprivation

Not a whole heck of a lot to say tonight-- I'm entering that delirious state of mind where I stare at familiar words and convince myself that I'm misspelling them and/or that they've lost all meaning.  Tonight is the third night in a row I'll be waking up every four hours around the clock to dose Connor with Tylenol to keep him from seizing while the antibiotics do their work.  We tried taking him off it today and his temperature started rising, so back on it he went.  Theoretically he shouldn't be contagious anymore as we're doing the equivalent of nuking his strep throat with the strength of antibiotics he's on, but evidently his body is still fighting the infection.  Either that or he's got something else going on.  Whee!

So at any rate, I am kind of ridiculously tired right now, and I'm going to go to bed now so I can get as much sleep as possible before I have to wake up again to dose the little guy. 

Good night.

~Jess

In Which We Visit The Hospital Again

Guess where we spent the day?

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

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

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

~Jess

In Which Connor Is A Maestro

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

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

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

~Jess

In Which Connor Does A 180

Well today was about eighty gajabillion times better.

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

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

That's kind of a depressing trend. 

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

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

Bring on the boring!

~Jess

In Which Connor Watches Entirely Too Much Hospital Television

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

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

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

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

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

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

Did I mention that I really like private hospitals?

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

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

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

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

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

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

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

So yeah.  Fun times.

~Jess

In Which Connor Has A Bad Day

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

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

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

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

~Jess

In Which I Have A Fantastic Time In Vancouver

I'm back!

The trip to Vancouver was an absolute blast and I had a tremendously good time.  We ended up winning our bout against the Terminal City Rollergirls' team the Riot Girls (I believe the final score was 89-193), but even if we hadn't it would have been a great game anyway.  I was skating with a pick-up team called the Tide Pool which was composed of members of all four of our home teams, so I got the chance to skate with quite a few people I normally skate against.  For a team that had only practiced together twice, we didn't do too badly! 

The atmosphere was laid back and fun, and we all really enjoyed ourselves.  Everyone played a nice clean game, there were no major injuries, and our hosts were extremely gracious.  All in all I'd say it was a near-perfect road trip!

Of course we got lost.  That's pretty much a guarantee any time you travel in a car with me anywhere that I'm not intimately familiar with.  But sometimes you find some really cool places while getting lost.  For example, on this trip I got lost looking for the place I was meeting one of our referees who was riding back with me, and I ended up driving through the million-dollar house section of Vancouver.  It was pretty amazing, even if it did take me an extra half an hour to get to the hotel.  Of course that might have also been because I was driving fifteen miles an hour.  Those were some really cool houses.

We didn't explore the city a whole lot because of time constraints, but we did stop at a really neat little farmer's market where we ate some fantastic local food and I picked up a souvenir or two.  It's a beautiful city and I'd love to go back and explore it with Jeremy and Connor some time when we have more time to stay and can really see the sights.

Connor had a quiet day yesterday but apparently had a couple of seizures today, and when I went in to check on him after I got home this evening he was really congested, so he might be getting sick.  Tomorrow we should find out what his blood levels looked like and see whether or not we need to adjust anything else medication wise.  I'm hoping he feels better in the morning. 

So over all the trip went pretty smoothly, but all the same I'm glad to be home! 

~Jess

In Which We Mess With Connor's Meds Again

So bright and early this morning I rolled Connor into the van and drove up to Seattle Children's to see the neurologist.  Early morning appointments are nice because no one is at the hospital so you tend to get in quickly, but they're kind of offset by all the sitting in rush hour traffic you have to do to get there.

Anyway, Connor's blood levels weren't all back yet-- the only things back were the general workup and the Depakote, which turned out to be on the low range of normal.  We're still waiting on the Lamictal and the Keppra.  In the meantime our neurologist went ahead and decided to up Connor's Depakote.  Once we get the Lamictal levels back we'll discover if we need to lower that medication or not.  It's kind of a crazy seesaw sort of way to manage things, but it can't really be helped.

Oh, and we also discovered that one of his pancreatic enzymes is now reading high.  It's not completely off the register high, but it's high enough that we'll be coming back to the hospital in a few weeks to get it rechecked.  Depakote can apparently cause pancreatitis as a rare side effect.  Wouldn't that be fun? 

Yeesh.

Otherwise things went all right today.  Connor, I'm happy to say, only had one seizure today; after I gave him the upped dose he perked up and seemed to be feeling much better.  It doesn't help that he's got three loose teeth right now (all in the bottom) and also is cutting his first permanent tooth.  When we went to occupational therapy late in the afternoon all he really wanted to do was chew on their vibrating toys.  He ended up completely crashing on Jeremy this evening, which I'm not surprised by.  We had a very busy day and he spent a good portion of the second half of it with his mouth stretched open in a huge, jaw-cracking yawn.  It made me tired just looking at him. 

Here's something weird to think about, by the way.  You know how yawns are contagious and whenever you see someone else yawn you have to yawn too?  Well, Connor doesn't have that mechanism, or at least he hasn't developed it yet.  I've never seen him "catch" a yawn from someone else.  There's an interesting article on Discovery News that covers this very topic.  Interesting!

Anyway, we're hoping that the medication change will give Connor a reprieve from his seizures for a little while.  And also that he won't get pancreatitis.  Because that would be bad.

Yeah.

~Jess

In Which Connor Has A Whole Bunch More Seizures

Well, Connor's now had eighteen seizures in the past three days.  Which is sort of a lot.

Obviously he missed his school field day this morning, and when he'd had his first three seizures before ten in the morning again (he ended up having seven total today) I called the neurology nurse line and left a message.  I figured that even though Connor has an appointment with them tomorrow morning I might as well give them a heads up that his neurons seemed to have taken up tap dancing again. 

So I got a call back pretty quickly, and the nurse asked me to bring him in to get his medication levels checked.  This is pure speculation on my part, but I'm thinking that maybe they suspect he's overdosing on Lamictal.  The new drug he's on, Depakote, has the side effect of making the Lamictal way more effective, which could mean that his current dose is now too high rather than too low like it was before.  And of course, pretty much any time you end up with too much of a seizure drug in your system, it causes you to have seizures.  Connor's meds are sort of a delicate balancing act.

Thankfully we got the amazing phlebotomist (or in layman's terms, the Blood Draw Guy) who works at Children's.  For those of you who go to Children's in Seattle, this guy's name is Hector and seriously-- he's incredible.  He finds a vein on the first try and puts the needle in so quickly and cleanly that Connor doesn't even notice.  Connor's not exactly an easy kid to get blood out of, either.  So we're always happy when we see Hector around-- I saw him out in the hallway by a lucky chance and pounced on him. 

Don't get me wrong-- the other phlebotomists there are all great too.  But Hector is amazing.

So we'll find out how things looked when we go in tomorrow morning.  If we're lucky than the medication balance will end up being the issue and it'll be a quick fix.  I guess we'll just have to see!

~Jess

In Which Connor Paints A Picture

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

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

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

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

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

~Jess