In Which We Go Out In Style

Connor had five seizures today; this trend is not going in the right direction.  I'm waiting to hear back from the neurologist right now, and I'll be taking the little guy in to be weighed tomorrow morning.  It could be he's gained enough weight now that his medication needs adjusting.  It's frustrating to see him scared during these seizures and not be able to do anything besides comfort him; I'm really hoping we'll figure something out soon to get him back on track.

Despite all the seizures we still had a packed day, though.  Ellen went in late to school today because this morning she had her first ever dental appointment.  I'd uploaded a couple of books and games about the dentist to the iPad last week in preparation for the trip, and we spent some time talking about exactly what would happen, how the tools would sound, etc.  Since she knew what to expect she breezed through the appointment, though towards the end of it she was getting impatient because she wanted to get to school.

Thankfully her orphanage had a dental hygiene program and taught all the kids about brushing their teeth.  They also ate fairly well, though I believe she was a bit overly fond of soft drinks while she lived in Thailand.  She had no cavities, and though the enamel on her teeth is a bit thin overall things looked great-- especially when you consider she hadn't ever had a professional cleaning.  They removed all of the tarter and staining, and she walked out with teeth an entirely different color.  It's amazing how dramatic a change a good teeth cleaning can make!

So after her teeth cleaning we grabbed a quick meal and then I dropped her back off at school.  I had a precious few hours to myself, and then it was time for me to pick up Connor.  The kids shed their backpacks at home and ate a quick snack (Ellen) and meal (Connor), and then we took off for the hair salon.

Ellen was really, really excited about cutting her hair, and the closer we got to the appointment the more different she wanted the cut to be.  She's had the same chin-length bob since she was four years old, so changing her hair was a pretty big deal.  By the time we got to the salon she'd settled on an edgy asymmetrical pixie cut that fit her rock star personality.  I was a little worried that she would change her mind once the stylist actually got to work with the scissors, but thankfully she loved it.

So you know how I always say that Connor grows in hair cuts?  Turns out he's not the only kid in this household that does that.  Ellen's new haircut makes her dark eyes look huge and gives her a swan neck.  She looks about twenty-five and absolutely gorgeous.  I'm still debating on whether or not she's allowed to leave the house tomorrow looking like that; she was already a seriously attractive girl and the whiter teeth and new 'do have definitely upped the ante.  I'm so not ready to have boys knocking on our door.

After that we went to the library at Ellen's request for the third time in the past week, which I do not have a problem with at all.  And then we went to the store, and then we went home and collapsed on the couch in exhaustion.

It was quite the day! 

~Jess

In Which Connor Straightens Out

Today I went to the dentist, which was every bit as fun as it sounds.  This time I was in the same room where I got the phone call about Jer three years ago, which was a little surreal but not really uncomfortable. 

I'm happy to say that while I have terrible eyes, I have great teeth; I've never had any work done whatsoever on them other than the occasional cleaning, and they seem to hold up just fine.  I am mystified as to how this works, considering I eat a ridiculous amount of chocolate, but hey-- I'm not complaining!  At any rate, other than being told I need to floss more (something I've heard at every single dentist appointment I've ever had) things went swimmingly.

In other news, we brought home Connor's knee extension braces today!  They are Wheaton Pediatric Knee Immobilizers, for those who are interested in the technical side of things.  Connor will be wearing these during his standing time, and working up to wearing them during the night.  They should not only help with his stability, but also help stretch out his hamstrings and to get a better stretch of his hip flexors and thigh muscles. 

He's been using them at his weekly physical therapy for a while now, so hopefully it won't take him too long to get the hang of them at home.  We're hoping that since they aren't too bulky he will be able to wear them for quite a while before he ends up in danger of overheating.  He's really cute when he stands up in them because all he wants to do is stare down at his legs with this really puzzled look on his face.  I figure he's thinking "why aren't my hinges bending?"  

While I was going through the little guy's stretching today, I noticed something really exciting.  Connor's clonus-- the involuntary jerking motion that is a big indicator of neurological damage that happens when you push up on his feet-- is almost entirely gone!  Last year this progressed to the point that you literally could not flex Connor's feet at all without setting off the muscle spasms, so this to my mind points to some major improvement in his overall neurological state.  He goes in to the neurologist on Thursday, so I'll be sure to talk to him about it then and see what he has to say about it.  I'm hopeful though that this is a sign that the serious skill regression across the board we saw with all of last year's seizures might potentially be at least partially reversible. 

It just makes me so happy that he's doing so well!

~Jess

In Which Jer And I Have A Date

Connor had his dental appointment today, and it went extremely well!  They were very surprised to see that he's already cut a permanent tooth and has another not far behind; they said it's super early for that.  When I explained that he cut his first primary tooth at around four months old they said that probably explained it. 

So his teeth apparently looked great!  The dental tech said that when she saw Connor was mostly g-tube fed she expected to see a lot of tartar on his teeth because that's usually a major issue for tube fed kids, which I thought was interesting.  So she was really happy to see that wasn't at all the case for Connor-- she really didn't have to do all that much to his teeth because we brush them on a regular basis, so they didn't really have any major plaque or tartar at all.  We don't use floss on him because his teeth are spread too far apart to need flossing, so that helps us out quite a bit.  Connor tolerates having his teeth cleaned really, really well but somehow I don't think that would extend to flossing.

Connor acted like such a big boy through the whole appointment; he didn't get upset at all, and he'd let the dentist look in his mouth for two or three minutes at a time with no fuss.  Then we'd take a ten or twenty second break, and after that he'd let her go right back to looking.  Also he still thinks the cleaning tool is pretty funny, which is nice.  The dentist suggested we get him a vibrating toothbrush will a circular head because his teeth are so small, but otherwise said that we're doing a great job.  We'll see them again in six months!

So Joanna came over and Jer and I went on our first date night in a while.  I think the last one that was just the two of us was when we went to Vashon island, so we were ready for some alone time!  Oh, we didn't do all that much, but that was perfectly fine; I think we just needed to spend some quality time together and enjoy each others' company.

So we started off by grabbing some coffee, and then we headed out to Bradley Park for a nice, leisurely walk together.  Somebody at the college down the road was playing some very, very loud live rock music and kept setting the car alarms off, but otherwise the park was lovely.  Then we drove across the street to buy Connor a new toothbrush.  We haven't tried it out yet, but it's similar enough to the dentist's cleaning tool that I'm sure it will probably produce some great giggles!

After that we bought Jeremy a new cell phone.  He accidentally forgot to take his old one out of his pants before throwing them in the wash; something we discovered when the washing machine started making a really loud banging noise when it hit the spin cycle.  So now his old one is really clean, but it doesn't make phone calls anymore.  Luckily Jer was more than overdue for a new free phone, so he spent a bit of time picking a new one out from the available options while I amused myself by accusing the electronics store employee of being an android.  He claimed that if the phone broke we'd have to talk to the manufacturer of the phone instead of the store, but I told him that obviously this was just a cover story to draw focus away from his giant robot conspiracy, as he and his fellow androids were no doubt making all of the products in the store in the break room during their lunch hours and so we'd be holding him personally responsible if our phone broke. 

In my mind it's not a successful shopping trip if the salesperson isn't slowly backing away and trying not to make any sudden movements by the time we're ready to leave. 

So after that we had just enough time to grab some pizza down at a local restaurant.  We ordered different personal pizzas, but Jer's pizza was better so I stole half of it because I'm nice like that.  He let me do it too, possibly as a distraction technique since I kept trying to get a hold of his new phone.  I like good food and bright shiny objects in that order, so this was probably a pretty good strategy.  At any rate, dinner wrapped up a fantastic and much-needed evening. 

Jer spent the rest of the time before bed fiddling with his new toy, which has a touch screen, in an attempt to figure out all the new functions and get things set up the way he wanted them.  Judging by some of the language I heard emerging from our bedroom, I think his campaign isn't going too well.  The androids will probably be pleased.

~Jess

In Which Connor Catches The Seizure Train

Well, I'm sad to say that little guy jumped back on the seizure train today-- he had three over the course of the afternoon.  I was hoping he'd catch a bit more of a break.  Let's just hope that this isn't the start of another seizure cycle for him, and that he'll have some more time to recover before we see anything like last Friday happen again. 

Otherwise the day was largely uneventful; the seizures pretty much knocked the little guy out for the day, so we didn't end up going anywhere.  I had so many big plans for the summer, and it's just flown by!  I'm going to try and cram in a few good field trips with the little guy before it's over and he's back in school.  I just don't like driving very long distances with him in the car when he's in an active seizure cycle.  Also he doesn't really get all that much out of field trips when he's unconscious.  But I'm hoping we can still cram in a trip or two, even if we have to stick really close to home.

The little guy has a dentist appointment tomorrow, which should be interesting.  This will be the first appointment he's had since he started losing teeth, so we'll see what they have to say about his permanent ones coming in.  He's got his first permanent tooth about halfway in now, and there's no sign of the second one yet.  We don't really have any idea what his permanent teeth will look like-- they develop at a different time from the primary teeth, so we don't know how his genetic issue might have affected them.  We do know that he has permanent teeth in there, so that's good.  I'm particularly interested in seeing what his two top front teeth might look like-- those two baby teeth are really different than typical teeth.  There's no real way to tell yet though unless they try to take x-rays of his teeth, which would no doubt be an adventure.  So I guess I'll just have to wait and see what they look like when they come in!

~Jess

In Which Connor Goes To The Dentist And Hilarity Ensues

Connor had a fantastic day today!

He was still running a tiny touch of a fever when he woke up so we stayed home from school yet again, but by mid-morning it was completely gone and he went sans Tylenol the whole day!  He's gotten to that stage where he's tired of being cooped up, and so when I deemed him able to go to his dentist appointment this afternoon he was so excited that he applauded.  By the time we got up the elevator and rolled up to the receptionist's desk the child was so happy that he'd started joyfully shrieking at the top of his lungs.  His happiness was so contagious that half the kids in the waiting room started imitating him. 

The other patients' parents were thrilled.

I'd been dreading this appointment for weeks because this was to be Connor's first real tooth cleaning.  It was certainly not his first trip to the dentist-- he's had fluoride painted on his teeth every six months since he grew the chompers-- but he's never actually needed them cleaned before.  Connor's teeth are really small and wide set (they don't touch each other at all), he doesn't chew, and he's mostly g-tube fed, which cuts down on the amount of plaque that builds up on his teeth.  But though he opens up readily enough for a toothbrush at home he's really sensitive about what goes into his mouth, so I worried that this would be a traumatizing appointment. 

Boy was I ever wrong.

Apparently the tooth cleaning brush-- you know, the Little Round Whirry Brush (that's a technical term, there) not only makes a great noise in Connor Land, but also it tickles, which as a result made the whole process hilarious.  He charmed the pants off the dental tech; I'm pretty sure that uncontrollable giggles are not the response she generally gets from her four year old patients.  He held amazingly still and didn't mind her fingers in his mouth at all! 

And luckily his teeth didn't need a more thorough cleaning, as I'm pretty sure he wouldn't have found the Pokey Stick Thingy (also a technical term) to be nearly as funny.

So his teeth looked great!  Well actually they look small and wonky (and in the case of his front tooth with the weak enamel, orange) but they are amazingly clean: especially when you consider that we don't floss them at all.  The thought of trying to floss Connor's teeth makes me hyperventilate a little. That would be an endeavor that could only end in disaster and somebody bleeding.  Probably me.

The only bad moment in the whole appointment, in fact, was the part where Connor and I were lying back in the dental chair (the little guy is much more cooperative if he sits on my lap for appointments) and he proceeded to recreate the entire 1812 overture in tooting form.  Seriously-- I thought for a moment that a machine gun was going off in the room, and I swear Connor's bottom actually levitated off of my leg. 

For about five minutes. 

And then there we were, the four of us-- me, the tech, the dentist and the world's smallest rear jet-propelled aeronaut--stuck in an extremely tiny exam room that now smelled, shall we say, Not So Fresh.  The dentist had to open the door before we all suffocated, though it took a minute because he was laughing so hard he couldn't find the door handle. 

In the meantime I was desperately hoping that tooting was all that had occurred, because while I carry a change of clothes for Connor in the van I didn't have an extra pair of pants for me.  Luckily I escaped stain-free.

Otherwise the appointment went extremely well.  I think Connor's teeth look so great because he polishes them by himself all the time.  He used to just use his sleeve to do this, but recently he's become very enamored with his socks.  After his cleaning he decided to use both, and so he spent about twenty minutes or so very diligently chomping on one and then the other in turn. 

I haven't tried this method for cleaning teeth, partially because I don't have a palate sophisticated enough to appreciate the subtle nuances of a mouthful of dirty sock, and partially because even if I did there's no way I could get my foot up to my mouth anyway.  I'm about as flexible as North Korea.  How I produced a child who would fit in very well with Gumby's social circle is completely beyond me.

At any rate, I'm glad that the appointment went so well!  Next time I won't be nearly as worried about his reaction to the dentist's office.  As long as they don't use the Pokey Stick Thingy, that is. 

~Jess