In Which I Sort Through Improbable Animals

Connor didn't feel well today; I suspect he might have caught something on the plane ride home.  He had three seizures and was running a bit of a fever.  Hopefully he'll be feeling better tomorrow.

So we stuck close to home; since the little guy spent a good portion of the day napping I took the opportunity to clean his room.  The nice thing about having a Deaf kid is that when he's got his hearing aids out you can haul stuff around, run the vacuum cleaner, etc. and you aren't going to wake him up.  I reorganized his closet and all of his storage areas, so his room is all nice and neat now.

Over the course of the cleaning, I collected up a huge pile of all Connor's stuffed animals.  I'm not exactly sure how many he has because I didn't count them or anything, but there are a lot of them.  I started actually paying attention to what they were when I was going through them, and he's got some really, really strange stuffed animals.  I have no idea where most of them came from, either.  Maybe they're multiplying in the bins.

Some examples of the interesting wildlife Connor has collected include a gray goat (with a white goatee, as is appropriate for goats), and a gray gorilla (also with a white goatee, which is less appropriate for gorillas).  I suspect maybe they are related due to the whole multiplying-in-the-bins thing, and if any more goatee-wearing animals show up in the bins my theory will be confirmed.  I'm not sure who the mother is, though, as we don't have any female gorillas in the bins.  The most likely suspect is a bear with some gorilla ancestry. 

A bear is most likely statistically because Connor has way more of those than any other animal.  So many bears.  Bears wearing things no respectable bear would be caught dead wearing, like army uniforms or little tiny sports jerseys or bunny ears.  The only way a bear would actually wear bunny ears was if it had just finished eating the rest of the bunny and was saving some for later.

He has a couple of little birds, a sea turtle, not one but two hedgehogs, a few frogs of varying sizes, a leopard, and several kinds of dogs, some of whom are wearing clothing in a similar fashion to the bears.  I was okay with the clothing on the dogs as people really do dress their pets up in all kinds of ridiculous outfits, until I got to the bulldog.  It's a bulldog wearing a raincoat and carrying a pumpkin.  What the heck?

Okay, so I had to go get the bulldog just now to take another look at it, and on closer inspection he might actually be wearing a weird squished pilgrim hat of some sort.  Oh, and also according to his tag he apparently fights cancer.  This makes much more sense.

I'm pretty sure that this is one of the animals some random person on the street gave us.  This sort of thing happens at least two or three times a year and I still don't know quite how to react to it.  We'll be sitting at a coffee shop, reading a book (me) and pointing out every single car that drives by (Connor) and somebody will walk up to our table, pull a stuffed animal out of their purse and present it to Connor.  Then they'll tell me what an absolute angel he is and how they just had to give him something because he's such a "poor dear lamb." (the last person who did this was elderly and British, and that's the actual expression she used). 

And it's not just animals-- he's been presented with candy, paper flowers, stickers, balloons, and on one memorable occasion a miniature disco ball that played a tinny electronic version of "Staying Alive" when you pressed a button on the top. 

Don't get me wrong; I don't have any problem with stuffed animals or with people giving Connor presents-- people we've at least interacted with, anyway.  It's the whole "complete stranger walking up to us and presenting Connor with a gift thing" that throws me for a loop.  I haven't figured out a way to graciously refuse yet, and for that matter many of them simply present Connor with whatever they have instead of asking me first.  While I know they mean well, I'm never sure exactly how to respond-- especially since I get the impression that many of them are giving him things because they feel sorry for him.  That isn't exactly something I want Connor to internalize.

Is this something that happens to other people?  Is it just people who have children with special needs?  Or do parents with typical kids have complete strangers pop up out of the woodwork and give their children small pilgrim hat-wearing, cancer-fighting stuffed bulldogs every once in a while too?

~Jess

In Which I Forget An Anniversary And The Heat Wave Continues

I realized today that the third anniversary of Jer's injury in Afghanistan came and went last week and didn't even cross my mind.  Jer didn't mention it either.  I think it's kind of nice that we've gotten to the point that we don't feel it's a date we need to dwell on.  While the event definitely changed our lives, mostly what it changed was the details.  Jer's still the same wonderful man I began a relationship with over a decade ago.  I'm pretty glad about that.

In other news, Connor woke up running a fever this morning and had two seizures right off the bat.  Today was not a fantastic day for a fever, as it was supposed to be one of the hottest days of the year.  I figured the best thing to do would be to vacate the house and rent a hotel room, which I wasn't really looking forward to but couldn't think of another good solution.  Luckily the same gracious friend who let us hang out all day yesterday opened up her home to us again, this time for the entire night if necessary.

Connor ended up rallying towards the end of the day, and his fever disappeared as mysteriously as it came.  So we left for home around 8:30 in the evening.  It's cooled down enough that Connor's back in his room now, and the worst of the hot weather should be over for a while.  If we do get more hot weather it will be after we have our air conditioner installed, which happens on Tuesday.  Then we'll have one less thing to worry about!

~Jess

In Which We Play Some More And Connor Is Sick

Today my dad and I went out fairly early for a morning drive.  It was lovely spending some one on one time with him!  Then we drove back to the house, picked up Mom and did some exploring in Orting, which is a cute little town just south of Puyallup that has a wonderful bike trail that runs up into the Rainier foothills. 

Then after lunch, the boys stuck around the house and my mom and I drove out to the Rhododendron Species Botanical Gardens.  This is the first time I've visited the gardens without Connor, so we were able to take the trail up to the alpine gardens (it's too steep for Connor's wheelchair to manage). 

We actually managed to walk out of the nursery on site without buying anything too, which is nothing short of a minor miracle for my mother and I.  We're kind of gardening addicts.  Never fear though-- we plan to make up for it tomorrow by planting out a new bed in the front yard.  Hooray for gardening!

Unfortunately Connor is coming down with a bug; he started running a low-grade fever this evening and he was having some trouble keeping food down.  So we'll keep an eye on him over the next few days.  Thankfully we caught the fever early enough that he didn't have any seizures because we got some Tylenol into him right away.  I guess he caught the bug I had earlier in the week.

We would have been keeping him close to home tomorrow anyway, because it's supposed to get up to 84 degrees!  That's too warm for him to be spending time outdoors.  We'll open up the windows and keep the house cool tomorrow so that he doesn't overheat on top of the fever. 

Hope he feels better soon!

~Jess

In Which Connor Feels Hot And Cold

Connor slept for two hours last night and is apparently planning on staying up all night too, which makes me once again incredibly grateful for our awesome night nurse.  Otherwise I would probably be less than chipper tomorrow morning. 

The little guy seems to have something going on, though we're not sure what it is.  He seems to only be popping a fever in the afternoons and early evenings, but in the morning and in the wee hours of the night he's fine.  I'm not sure exactly what's going on there, but the temperature fluctuations are enough for him to have seizures.  He had four yesterday and two today.  We took him in to see the doctor this afternoon, and she ruled out the most obvious things: ear infection, strep throat, etc.  If he's still doing this weird coming-and-going fever thing on Friday, we'll go in again and she'll do some more testing to see if maybe he's got a UTI.  Whee.

Seriously, the little guy needs to feel better soon.  This is no way to spend the summer!

We had a brief meeting this morning at our adoption agency, and one of the little guys there, from India, was the very first kid we inquired about when we started our adoption process ages ago.  As it turned out we didn't qualify for the India program because we were too young, and there was already a family really interested in the kiddo anyway, but it started us on our adoption process.  It was really cool to meet him here a few years later and get the chance to see just how well he was doing with his family!  I thought that was pretty neat. 

Hopefully by the end of the year we'll be the ones bringing our daughter up to visit our agency!  We can't wait to get her home.

~Jess

In Which Connor Is Sick Again And Our Yard Gets An Instant Facelift

Connor had his last day of school today, and it was a super small, laid back class.  I don't think he's quite realized he's out for the summer yet, so I expect him to probably freak out every time we drive by his school for the next couple of weeks like he did last year.  I think he figures I've just forgotten where it is or something, and if he can yell at me loud enough I'll clue in and go drop him off. 

We probably won't be driving by his school any time in the next few days though, because late this afternoon he started running a fever again and by the end of the day he'd had five seizures.  We'll be taking him in to the doctor's first thing tomorrow morning to see if they can rule out the most obvious things, like a return of his ear infection.  He's conked out right now, and we'll take it easy tomorrow too.

Jer's taking a few weeks vacation so that we can enjoy the summer together, and that started this week.  I'm enjoying having him home already; it's so cool that I can go to the bathroom without an audience in the middle of the day!  Otherwise Connor gets to be my bathroom buddy during the work week, since he needs eye-on care pretty much all the time.  Jer immediately got to work and pulled a bunch of weeds out in the yard, because he's amazing like that.  I'm a pretty lucky gal!

We have new neighbors on one side of our house, and they've been doing some hard work too.  Yesterday we heard a bunch of noise coming from that side of the yard, and then the big Japanese maple on their property that overhung our fence on that side started disappearing in large sections.  A few minutes later one of our new neighbors knocked on the door to collect the branches that had fallen on our side of the fence.  Apparently the tree whacked him on the face a couple of times while he was mowing the lawn, so he got out the chainsaw and chopped it down.  It makes me think we probably shouldn't get on our new neighbors' bad side-- at least anywhere that they have access to power tools.

They seem pretty nice, though.

Anyway, now our yard looks completely different; I keep looking outside and thinking something's missing.  It's that same sort of startled feeling I get when I look in the mirror right after getting a major hair cut.  It's way, way more open now near my herb garden and much more sunny.  The stuff that I had planted in that part of the yard was all for part shade, and now it's in full sun and in danger of frying.  So I'm thinking I might either need to transplant some things or else plant a tree of my own.  A dwarf fruit tree might fit pretty well in that spot, or maybe I'll put in some highbush blueberries. 

Decisions, decisions!

~Jess

In Which Connor Has An Extremely Lousy Day

Connor had twenty-one seizures today, which was not at all the kind of day I'd hoped we be having.  He didn't stop breathing, but we had to use oxygen on pretty much all of them, and some of them lasted a pretty long time-- the longest was just under five minutes.  Though I haven't checked my records to be sure, I think this might be the most major seizures he's ever had in one day.  Woo hoo.

Despite being stripped down to a diaper, having a couple of sponge baths and alternating Tylenol and Ibuprofen, the little guy still had a low-grade fever all day, which is why the seizures just kept coming.  We talked to his doctor, and if Connor continues to have seizures and a fever by tomorrow night we'll be heading in to the emergency room for the first time since December. 

Connor and I spent most of the day on the couch; where he huddled in a miserable lump, clutching my hand in between seizures while I let him watch more DVDs than he usually sees in a month.  Towards the very end of the day he perked up just a little bit, so I'm hoping that maybe the worst is over and his fever will break during the night.  Today was so utterly miserable for him, and he hasn't had a day this bad in a long, long time.  The last thing he needs is a repeat of today.  In fact, I would be perfectly happy if we never had a repeat of today.  Another day like this one, and I may accidentally find out what a chocolate overdose looks like.  That is, if I can find any in the house that I didn't eat today.  I've gotten spoiled by Connor having so many good days, and I'd forgotten just how nerve-wracking and exhausting this kind of thing is. 

I'm so glad this day is over.

~Jess

In Which Connor Is A Sickykin

Connor had a not-so-hot day today, though it started off pretty well.  He went to school, came home and had his quiet time, and then spent some time in his stander watching a couple of episodes of season one from The Muppet Show.  It was only after he was completely done with his stander time and I was setting him up to work with his iPad that the day started going downhill.  He had a seizure that lasted twenty seconds or so.  Then five minutes later he had another one.  At that point I checked his temperature and discovered he was running at about 100.5.  I gave him some Tylenol and made him up a little bed on the couch.

Within twenty minutes he'd had four more seizures and it was obvious that he was going into status; he'd have a seizure, fall asleep afterwards, wake up for twenty seconds or so and then have another seizure.  So during the fourth seizure I gave him a dose of Diastat, which we haven't had to use for months.  He actually perked up shortly after the Diastat (which isn't exactly how Diastat is supposed to work and tells you just how lethargic he was) and it stopped the seizure cycle until the Tylenol had a chance to kick in and bring his temperature down. 

So he snoozed for most of the afternoon, perked up a bit in the evening and then conked out right at bedtime.  I'm hoping that this will be a quick bug and he'll be over it soon; he sounds a little stuffy but other than the fever doesn't seem to have too much else going on.  We'll take it super easy tomorrow and see how he feels.

Bleagh.

~Jess

In Which Connor's Day Takes A Turn For The Worse

Connor had a little seizure this morning, but he perked back up after a short nap and I sent him off to school.  He apparently had a pretty good day at school.  Unfortunately that was the end of his fun times today, because by eight this evening he'd had ten seizures.

When he wasn't having a seizure he was asleep; he spent about eight hours of the day snoozing and he's conked out right now.  We think he's probably getting sick; he's running a low-grade fever so we dosed him up with Tylenol.  It's hard to tell whether or not the fever is related to an actual illness or if it's just a side effect of all the seizures, though. 

He hasn't had this many seizures in a long time, and this was totally out of the blue.  So we're really hoping that this is related to an illness and isn't an indication that his medication is failing.  He's been doing so well recently, so if these seizures aren't sickness related this is definitely quite the setback. 

Either way, I just hope he feels much better tomorrow. 

~Jess

In Which Connor Feels Better And I Play Catch Up



Cricket helped keep Connor's toes warm, because she's thoughtful like that.

 I'm thankful to say that not only was Connor's fever was gone when he woke up this morning, but he had no seizures today!  Apparently yesterday was a complete fluke.  I guess he had a little bit of a bug or something.

After his follow-up appointment this morning, where he was given a clean bill of health and told to come back in two weeks for a final check-up, Connor spent most of the day in recovery mode.  He spent about eight hours napping on the couch while I tried to get caught up on various e-mails and projects I've been neglecting since he started this whole crazy tailspin back in November. 

In between e-mails I also finished up a couple of small sewing projects and started a new one, which is a bit of an experiment.

Connor overheats really easily, so I don't like to put conventional jackets on him because I have to undo his shoulder straps to get them off.  His grandparents gave him a poncho a few years ago that works really well except for three things. 

The first is that it's made to be worn by somebody who is standing, not sitting in a wheelchair with shoulder straps on, so it bunches up in the back.  The second is that it has his name on it in big letters across the front.  It's cute and it's great for school, but I get paranoid about the kid having his name on full display in public areas.  The third is that because he's grown quite a bit, the poncho now comes to about his shins when he's sitting, and he gets cold toes! 



Rawr.



So I got some fleece and figured I'd try to make a couple more ponchos for the little guy.  I started on one today in a lovely teal color.  I've made it to Connor's measurements, and much longer in the front than in the back, so hopefully it will work well for him while he's sitting in his chair.  I got as far as cutting it out and hemming the neck hole, but I had to stop there because the little guy was asleep and I didn't want to do the bottom hem without trying it on him first. 

I'm thinking I'm going to make it two sided and line the other side with gray fleece to make it warmer (and so I can flip it over when he drools all over it).  I whipped up a quick design for a little orange monster for the teal side that should be super quick and easy to make out of felt.  I'm not sure what I'll stick on the gray side yet-- maybe a dinosaur. 

Or a robot.  It's hard to go wrong with robots.

~Jess

In Which Connor Creates More Drama And I Get Some Relax Time

So the good news is that Connor does not have an infection on his arm.  It actually looked better this morning once the top layer of skin all peeled off.  The doctor thinks he probably had a reaction to the tape they used on his arm when they put the IV in there on Tuesday.  So apparently now my kid is also allergic to medical tape or something.  Oh well; at least he doesn't have cellulitis.

The bad news is that he had a seizure at the doctor's office, and by the time we visited the pharmacy at the Target across the street and headed home he'd had two more.  His temperature was barely elevated at the doctor's office-- around 99 degrees-- but when I took his temp when we got home he read 101.2, which is when I pulled out the Tylenol.

He had five seizures total by the end of the day.  Once the Tylenol kicked in his temperature went back down to just above normal, so at least it's doing its job well.  But to make sure this isn't an issue stemming from the outpatient procedure Connor had, we have to go back in to see that doctor tomorrow morning.  Whee! 

I did feel quite a bit better today despite all of the seizure-and-fever-fun, because Jer, knowing how stressed I've been, gave up his gym time and kicked me out of the house when he got home.  I tootled around a craft store, had a cup of chai and sat with a book for a while, and played around in a home decor store stealing ideas for throw pillows that I could do with felt.  It was lovely to get the chance to just relax and play around for a while; I badly needed the break. 

Jer is awesome like that.

~Jess

In Which We Go To The Doctor

Connor had his GI doctor's appointment this morning.

It went really well!  Connor's g-tube site looks fantastic, and there's no need for him to go up a size in tubes yet.  The doctor was a little surprised that Connor hasn't ever had to go up a size since the tube was installed about two years ago.  I pointed out that the kid has only gained two pounds since we saw the GI department last year.  The doctor said that normally he'd be concerned, but that Connor looks proportional and has "a healthy layer of subcutaneous fat," by which he probably meant that the kid has a bit of pudge around his middle.  So he's not worried that Connor is small.  Also I totally want to use that expression in public.  "I have a healthy layer of subcutaneous fat" sounds way more sophisticated than "I've been eating too much ice cream recently and I'm kinda pudgy."

So Connor's clear for another year as far as GI goes, which is pretty fantastic.  I love it when appointments go quickly and smoothly.  I wish it would happen more often!

The little guy seemed to feel a little better today, and his fever was down so hopefully whatever it was that was driving his temperature up is passing.  We think he might have had a bit of a stomach bug.  Since we were on post around lunch time for his doctor's appointment, we met up with Jeremy for lunch.  Then afterwards we went shopping for the last of the Christmas presents I needed to get, because procrastination is pretty much my middle name this year.  They are all wrapped and sitting under the tree now.  Or at least they were wrapped for a while this afternoon, before the cats discovered there were tasty new presents to chew on down there.  We'll see how long it takes before they shred the wrapping paper.

Some people are probably going to be getting their presents after Christmas but in my defense it's been sort of a crazy month.  I'm just hoping that Connor's health will hold for a while and we can get back into a normal routine. 

The kid deserves a break!

~Jess

In Which Connor Keeps The Heat On And It's Really Cold In Here

Connor had another feverish, seizure-filled day today, though thankfully it was a lot better than yesterday on both counts because his fever didn't have a chance to climb very high at all before we were throwing medication at it.  The highest temperature I clocked on him today was 101.7. 

He had six seizures and slept a good portion of the day, (which meant another ten hours sitting on the couch sewing for me), but towards the evening he perked up a little bit and even sat up on his daddy's lap for an hour or two before bedtime. 

 Because of all the sitting and sewing I've now almost finished the stocking I'm working on.  I've done everything on the front except for the polar bear, and I'm waiting on the felt for that to arrive in the mail.  So depending on when that gets there I might actually have the project finished by Thanksgiving.  Crazy. 

Another reason Connor's fever probably stayed lower today was that it's so darn cold in our house; the furnace decided to go out on us.  So we've got the furnace guy coming tomorrow too.  Right now I've got the gas fireplace going and we're all bundled up.  Connor's sleeping in our room tonight because his little room is pretty tiny and has a giant window, which means that it's freezing in there.  I've got a blanket over the gerbils' cage and they're buried down in their bedding; hopefully they'll be all right.

Look how mistreated they are.

Cricket demonstrated her feelings on the general temperature in the house by sitting down literally three inches away from the fireplace and refusing to move.  Every once in a while she'd shoot me a wounded look because obviously she was just freezing in her nice thick fur coat.  I finally put a blanket down in front of the fireplace for her, and she and Loki called a truce and spent the entire day curled up by the fire.  As far as they're concerned, I've turned the fireplace on specifically for their benefit. 

Anyway, I'm taking the little guy in tomorrow morning to the doctor's office, so we'll see whether or not he has some sort of an infection going.  We're still not seeing any coughing or congestion at all.  For a typical kid, having a fever like this wouldn't be a big deal, but with Connor it can quickly cause some major issues so we need to have him seen.  I tried to get an appointment for today, but they didn't have any so it was either wait until tomorrow or take him to the Emergency Room today where he could sit for a while and marinate in everyone else's germs. 

Whee!

~Jess

In Which Connor Visits Seizure City

Well, this was not a particularly fun day.

It started out well enough; I popped down to the coffee shop to do a little bit of sewing before Joanna came; she was watching Connor for a little while today so Jer and I could go do a bit of Christmas shopping and grab some lunch.  I was doing quite a bit of sequin work today, and I usually try and do that outside the house as the cats are more than happy to help me with it.

Anyway, by the time I got back to the house Connor had already had two seizures and Jer gave him a dose of Lorazepam.  By the time we got back from lunch he'd had two more.  After seizure number six we gave him a second dose of Lorazepam and I checked his temperature.  He was running at 102.4. 

Seizure mystery solved.

So we gave him a dose of Tylenol to start bringing his temperature down.  An hour (and two more seizures) later I checked his temperature again.  Now he was at 102.9.  That wasn't exactly the direction we wanted to be moving in.

We tried giving him a sponge bath.  That brought his temperature down three tenths of a degree-- not enough to make him stop having seizures.  I went down to the store and bought some children's ibuprofen.  Normally we don't use it on Connor because of the possible side effects and the fact that he's on an aspirin regime, but he'd just had seizure number nine and it was either that or the hospital.  We checked his temperature again after an hour and it was down to 101.2. 

And it kept going down.  And down, and down some more until he started shivering uncontrollably.  When I checked his temperature he clocked in at 96.4.  Apparently this isn't uncommon; the body overcompensates a bit sometimes after a fever breaks.  So we bundled him up for half an hour or so until his temperature evened out, and then put him back to bed with his regular covers.

So we're not sure what the heck that was all about-- he didn't have any symptoms other than the fever and of course, the many, many seizures.  The little guy doesn't even have a stuffy nose.  If he's still having issues tomorrow I'll be taking him in to the doctor to make sure he doesn't have a UTI or some other sort of infection.  He won't be going to school tomorrow obviously, as he has to be fever-free for at least 24 hours before he's allowed to return to class. 

Also I'm guessing he might be kind of wiped out tomorrow.  He certainly had a rough day today.

~Jess

In Which It Is Halloween And Connor Gets Sick

Happy Halloween, everyone!

Well, I spoke too soon yesterday on the seizure front, I'm afraid.  Connor had a pretty good morning, and then late in the afternoon he had his first seizure in two weeks, which is when I discovered he was running a 101 degree temperature.  He had two more seizures before the Tylenol brought his fever down enough to get them stopped.  Other than the temperature and saying that he was tired he didn't seem out of sorts, though.  He spent a good portion of the afternoon sleeping, so maybe his body is coping with the fever that way.  I'll keep an eye on him tomorrow and make sure his temperature doesn't get any higher.  Since he doesn't have any other symptoms right now, I'm wondering if maybe he's got a bit of an infection going-- maybe a UTI.  We'll just have to see.

Once the Tylenol kicked in he seemed to perk up, and by the time Jeremy got home he was feeling pretty good, so Jer took the little guy out for just a bit of trick-or-treating.  Connor was a yeti again this year; he got so excited about that costume when I took it out that I figured he could just wear it again this year.  So while the boys were out I stayed home and passed out candy.  We had a slim crop of trick-or-treaters this year, possibly because it was pretty cold outside.  There were quite a few teenagers who came to the door; I'm hoping that next year Ellen will be home and able to try out trick-or-treating for the first time! 

My sister left today and I miss her already.  It was lovely having her here; I wish we had the chance to get together more often.  While I absolutely love living up here in the Pacific Northwest, it is difficult having most of our family 2100 miles away in Texas.  I guess I just have to convince them all to move up this way!

Anyway, hopefully the little guy will be feeling better tomorrow.  I'll be spending that day helping him out with the vast majority of his Halloween candy, which he can't eat.  It's a horrible job, but somebody's got to do it. 

Yum!

~Jess

In Which Connor And I Are Sicky Sadkins

So Connor and I spent the majority of today in bed.  This is because we are both not feeling so hot right now.

Connor was running a fever and had five seizures before I gave him some Diastat.  He actually perked up after the Diastat, which as it's a sedative tells you just how punky he was feeling.  He was a little limp wet noodle, of course, but much more cheery.  I'll keep him on Tylenol for the next few days and hopefully the Diastat will keep the seizures at bay until he's better.  Usually the effects last a couple of days with him.

I'm not running a fever, but I seem to have picked up some sort of a stomach bug, which has not been particularly fun.  I asked Jeremy to bring me home some saltines, chicken broth and chicken soup, and that's pretty much what I've eaten today.  No doubt I've gotten about 400% of my required sodium intake.  Oh well.  I started out with the saltines and the chicken broth, and then I tried a little chicken soup, which proved to be a mistake.  I've gone back to the saltines and chicken broth for now and I'll repeat the experiment in the morning.

The fact that I actually requested saltines should tell you that I'm really not feeling good, by the way.  Normally I far prefer crackers that have way, way more butter in them.  Because butter is awesome.  But I don't really want to think about butter right now because it's making me kind of queasy.

Luckily Jeremy feels fine, which is a very good thing.  I hope he stays healthy and free of either one of these bugs (I'm not totally convinced that Connor and I have the same thing) because having the whole house sick would really not be any fun. 

Who would restock us on saltines and chicken broth?

~Jess

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

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

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

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

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

I hope he feels better soon.

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

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

~Jess

In Which Connor Has A Birthday And We Got Our Big Phone Call

The Saddy Sicky Birthday Boy:
At Least There Was Chocolate Whipped Cream!

Yay!  Happy birthday to Connor!

Can you believe my kid is five?  I sure as heck can't.  It really doesn't seem like it's been five years since we got to meet our little guy for the first time.  Only now I guess he's not so much of a little guy anymore.  He's more of a big boy. 

Sigh.

Unfortunately the big boy started running a low-grade fever today and wasn't really able to do much celebrating.  We spent a quiet day at home watching a couple new birthday movies in between naps and seizures (he had five today).  Also he had a couple of bites of chocolate whipped cream, but he didn't really seem interested in it, which tells me he was feeling pretty punky.  He ended the evening snuggled up in Jeremy's lap.

Connor did enjoy the movies quite a bit as television watching is a very special treat for him, but as far as birthday celebrations go it didn't really seem like a very good one to me.  We'll reschedule his special family outing for another day when he's feeling better.

However, he did get really excited when I told him he'll be going to visit and ride Thunder again on Monday.  We'll be fitting him for a helmet on Sunday (since I have a roller derby bout to go cheer at tomorrow and won't have a whole lot of time for shopping) and hopefully he'll be fully recovered by then and ready to have a great time! 

Don't worry; I'll do my very best to get some good pictures of him riding for you all, though I'm not sure cuteness on that scale can be recorded without my camera exploding.

Even though the little guy wasn't feeling up to par the day ended on a high note; we got our call from the adoption agency with our update on Ellen!  When our adoption agency went to meet with her the orphanage workers immediately told her that she was being adopted by an American family-- which is something our agency and we weren't expecting at all-- and her whole face just lit up!  She was thrilled and asked to see pictures of us, which they were luckily able to pull out of our dossier (as we're way too early in the process for a photo album to have been sent over yet).  She thought we looked nice, is excited about the idea of having a little brother, said she's okay with cats (though she likes dogs better) and can't wait to travel to her new home. 

This is the best possible reaction from her we could have hoped for.  While Ellen will no doubt have a lot of conflicting emotions and will grieve leaving her home, school and friends behind, the fact that she wants to be adopted and is excited about coming to America will probably make her transition so much easier than if she was not interested in being adopted or was really against leaving her birth country. 

We were able to have a whole lot of questions about her answered, and the more we find out about her the neater the kid seems.  Turns out that she's already done a little bit of traveling internationally; she flew to China in 2010 for the Asian Paralympic games!  Apparently she's a really dedicated swimmer-- freestyle is her favorite stroke-- and she practices seven days a week.  She also studies the art of fencing. 

That's right-- we're adopting a kid who stabs people with swords as a hobby.  Jeremy, as you might imagine, couldn't be happier. 

We now have a bunch more little facts about her that are helping us get a better picture of the kind of young lady she is, and the more we learn the more we're convinced that she'll be a great fit for our family.  So hopefully in the next week we'll be receiving our updated pictures and translated documentation for her, which we're excited about seeing. 

We're so glad that we got great news!

~Jess

In Which Connor Gets Sick And I'm The Mother Of The Year

I swear I should know better than to write overly optimistic, upbeat blog posts.  I am really great at jinxing myself.

So we're pretty sure Connor's getting sick.  Before I put him on the Tylenol he was running a fever of about 101.4, which is enough to suggest that he's actually getting sick and it's not just me being paranoid.  That and the fact that he had nine larger seizures today.

Yes.  Nine.

None of them were more than about twenty seconds long, thankfully, and they were all the still-breathing kind, but nine seizures in one day is probably a new record for him and is way, way more seizures than I am comfortable with.  We gave him a dose of Ativan after seizure number five.  That was also the seizure where I thought to take his temperature and discovered he was running a fever.  I'm not really sure if giving him Tylenol helps stave off the seizures or not since he had four more after that, but if it does do anything I'd hate to think how many seizures he might have had without it.  I don't know why I didn't think to check his temperature until after he'd already had five.  Possibly I wasn't thinking clearly; I was flustered because of the earlier events of the day, which pretty much assured that I won't be winning any Mother Of The Year awards any time soon.

So about that-- after I dropped Connor off at school (he had a very short seizure right before school, which I probably should have taken as a warning) I headed home, picked up the books I needed to drop by the library, hit the bathroom really quickly and was off to my local coffee shop.  Then I swung by a little antique store and spent a leisurely time picking out a necklace and bracelet for Ellen to put away with her things for when she comes home.  After that I walked to the library, where I browsed for books for twenty minutes or so.  I thought I'd go back to the house and get the kitchen cleaned up before it was time to pick the little guy up from school.  When I got back I was surprised to see Jer pulled up in the driveway; he's normally at work that time of day.  He was throwing the car seat in the back of the car. 

"Have you got Connor?" he asked me.
"No," I said, baffled.
"He's had a whole bunch of seizures at school and they've been trying to reach you for an hour."

I threw myself back into the van and drove down to the school, cursing myself the whole way.  I'd left my cell phone sitting on the bathroom counter, where it had been ringing away more and more insistently the entire time I'd enjoyed my quiet morning.

I ended up talking with the nurse and teachers and we decided that since he'd had a quick recovery from his (three!) seizures at school that he could stay until the end of the day, and there was no harm done.  But I'm now considering having my phone surgically implanted into my body so that I can never leave it at home again.  Somehow I've managed to have it with me the other eight months or so he's been in school and I almost never get a phone call.  The one day I accidentally leave it at home is of course the day the kid's brain implodes. 

Yeah.  Mother Of The Year, right here.  I'll start working on my acceptance speech, because I've totally got that one in the bag.

I hope he feels better soon.

~Jess

In Which We Start Over Again And Connor Teaches Me A Lesson

 My scruffy haired little boy had a good day today.

He definitely needs a haircut, though!  So that's probably on our list for tomorrow.  Since we had rainy weather today he and I spent some quality indoor time together this morning; we read stories, played in his swing and in the bathtub, made music together, and had some cuddly time too.  Then he snuggled down, signed "Mommy" and grabbed my hand.  He took a little nap in his swing while I sang old family songs and gently rocked him. 

If I loved this kid any more I think it would kill me.

He's on Ativan again, which is unfortunate.  He didn't have any seizures today, but it seems like lately that's been the exception and not the norm.

One of the things we discovered at the clinic yesterday is that he's probably not been having febrile seizures.  Connor's autonomic nervous system is having such a difficult time right now that we can't rely on any auxiliary (i.e. forehead, armpit or ear) temperatures anymore.  They don't match up with his internal temperature.  So while we might get a reading of over 100 degrees on his forehead and under his arms, a rectal temperature will come out his normal 97.4 degrees (he runs cool). 



What that means is that instead of febrile seizures, Connor is probably having cluster seizures and the "fevers" we've been seeing are a result of his autonomic nervous system going haywire.  

So that leaves us with two conclusions.  The first is that since Connor won't tolerate an oral thermometer, from now on we have to take his temperature rectally.  Glorious.  The second conclusion is that once again, Connor's seizures are uncontrolled and we'll need to start looking at an adjustment of treatment. 

Perhaps even more disturbing is the fact that Connor has started twitching slightly every few minutes.  I hadn't even noticed because the onset of this was so gradual, but the doctors pointed it out.  Though we'd have to do another EEG to be sure, they think that his brain is probably misfiring every couple of minutes and so he's having what they term "microseizures."  These are new and suggest that the medication's effectiveness is continuing to deteriorate.  Needless to say I'm sad and worried about this turn of events.  

I have confidence that someday-- hopefully soon-- we'll figure out the right course of treatment and Connor will be able to enjoy life seizure free.  And I take a lesson in patience and optimism every day from my son, who takes his seizures in stride and only gets frustrated with them when they cut into his play time.  Otherwise once the side effects of the seizure wear off he simply smiles and gets back to whatever activity he was engaged in before. 

With him for an example, how can I do anything but pick myself back up from this latest heartbreak and dive back into my own most important activity-- making sure that my little boy is as healthy and satisfied as possible?  He deserves nothing less. 

And on the good days-- days like this one-- when he's giggly and smiley and energetic, I want to spend every precious second making him happy.

So we'll go back to the drawing board, talk with his neurologist and start looking at other solutions.  In the meantime I wouldn't mind a few more lovely days like this one.  It didn't matter that it was rainy and gloomy outside; my very own ray of sunshine held my hand for hours and wouldn't let go.

~Jess

In Which Connor Acts Up Again And I Make A Strange Purchase

Connor Is Tired Of Fevers And Seizures.

So I had all sorts of big plans about what I was going to do today while Connor was at school.  They involved the a chocolate donut, the library, a cup of chai, sewing (AKA stabbing myself in the fingertips with a needle repeatedly-- I really need to get a thimble) and if I had time for it a trip to the grocery store.  But I only got as far as the donut and the library before I got a call from the school to come pick up my tired, crabby son.  He'd had another seizure: the second one of the day. 


The little guy's fever is back.

Seriously, what is the deal?  We've got that developmental clinic appointment tomorrow, and I'm probably going to ask them to do a CBC just to make sure that he doesn't have some sort of weird infection or something.  I wouldn't be surprised if they want to check out his hypothalamus too to see if he's got some sort of enzyme deficiency or something going on.  Not that I think they're going to find anything; our mystery child generally doesn't come with any easy answers.  But a girl can dream, right?

So now we're back to the Tylenol and Ativan regime, after a measly two and a half days off.  I've got a call into Connor's neurology clinic just to give them a heads up about what's going on.  Not that there's probably a whole lot they can do, but Ativan is one of those drugs you don't really want to mess around with so they'd probably appreciate knowing how often we're having to use it.  I don't even have to listen to any of the button options on their answering machine service any more; I've got the whole thing memorized.  I think my mom is the only person I call more at this point, and if Connor keeps this up she may take second place.

Sorry, Mom.



Very, Very Tired.  Also Blurry.



Anyway, so I didn't get my cup of chai or the dubious pleasure of using my fingertips as pincushions, but I did go to the grocery store once Connor had slept off seizure number two and bought a box of pediatric suppositories and a tub of ice cream.  Connor only has two major symptoms with Ativan, and they are insomnia (guess who's still awake?) and constipation.  The past couple of weeks have been enough to throw his system all out of whack.



The ice cream was for me, of course.  Just because I don't take prescription drugs (or any other drugs, for that matter) doesn't mean I don't have a medication of choice.  This time the cure for what ailed me came in Cherry Garcia flavor.  They might as well put crack in that stuff, it's so addictive.

I went through the self-checkout aisle because I didn't want the clerk judging me.  They probably already think I'm weird because I go in there late at night after derby practice all the time and not only am I all sweaty and dressed in strange outfits but I carry roller skates around with me, so I don't really need to add to my reputation.  And really, who goes to the grocery store just for ice cream and suppositories?  Weird people, that's who.  At least I had Connor with me and I wasn't wearing torn fishnets this time.  Torn fishnets add an aura of illicitness to pretty much any activity you care to do-- no matter how innocuous-- and grocery stores become a minefield of innuendo when you are dressed in derby gear. 

I sure as heck don't buy suggestive vegetables while I'm wearing them, anyway. 

At any rate hopefully we'll make it through tomorrow without incident and if we're lucky the team might have some ideas about what the heck we can do in regards to all these fevers and seizures.  In the meantime, I'm going to finish my ice cream and if I'm lucky I might be able to get in a little sewing right before bed. 

I've got my band aids all ready.

~Jess