In Which Connor Out-Screams A Hippo

Connor has this application on his iPad called Talking Baby Hippo.

Basically it's this purple hippo on a tiny tropical island who mimics all of the sounds you make in an extremely high pitched voice.  Despite its rather loose take on scientific accuracy (who knew hippos come in pastel colors, hang out ocean side and spend a lot of time sucking down helium?) I like the program because it encourages Connor to vocalize.  We think he actually has one sound he's assigned meaning to now!  Predictably, it's "uh-uh." 

Now if we can just get him to say "uh-huh" we'll be golden.

We're not expecting speech to ever be his main mode of communication-- he still only produces nasal (m, n, and ng) and approximant (w, r, l, and y) consonants and the only vowel sound he makes is 'ah'; there aren't a whole lot of words you can construct from those pieces.  We figure the more ways he has to get his point across the better though, so we'll keep encouraging him to make lots of noise!  At least we'll encourage it at home, anyway.  Sometimes in the middle of the grocery store I wish he wasn't quite so enthusiastic about the sounds he's making.  For such a small kid he's got a remarkable lung capacity.

Anyway, so Connor was playing with his hippo application and having a great time and I was sewing on the clutch purse (which I finished today) as well as occasionally making the hippo sing songs from Alvin and The Chipmunks for my personal amusement when my phone rang.  It was Connor's pharmacist, who was calling about a prescription. 

We're on a first-name basis, which tells you how often I talk to the pharmacist.

I chattered away when the pharmacist told me that she'd call me back.  "I think something's funny with our connection," she said. "I'm getting this weird really high pitched echo of your voice."  We hung up and she called me again.  "Huh.  It's still there," she said. 

That's when I realized that the hippo program-- which was on at top volume because Connor's hearing is most affected in the higher ranges-- was still picking up everything I was saying and faithfully repeating it back word for word.  Evidently it was coming in loud and clear on the other end of the line.  Whoops.

So I turned the iPad off to continue my phone conversation, which proved to be a mistake.  Connor had really been enjoying the talking baby hippo and when signing that he wanted it back proved ineffective he decided that doing what I'd been encouraging him to do all day-- exercising his vocal cords-- would maybe make it reappear instead.  So he started shrieking in an extremely high pitched voice at the top of his lungs, doing a remarkably good imitation of what the hippo would have sounded like had its volume been increased about threefold and if it could only repeat back the vowel "ah." 

Needless to say my phone conversation with the pharmacist was not terribly productive.

~Jess

In Which I Sew Dead People

So the project that I lost all track of time working on yesterday is this one. 

No, it's not Ellen's peacock Christmas stocking; I've set that aside for a few weeks because I was getting burned out doing feathers.  I have no reason right now to keep going when it's not fun anymore, since Christmas isn't exactly just around the corner.  Yesterday I figured I'd take a break from that project and do something a little easier. 

My roller derby league has a fundraiser coming up at Hell's Kitchen on February 4th.  Among other things it's going to involve live music from four awesome local bands, some of the derby girls boxing each other, and a raffle.  Since I'm not going to be boxing I figured I'd make something for the raffle!  So yesterday I bought a basic wool clutch purse from the fabric store, whipped up a quick design and started sewing away.  I'm now about two thirds of the way through the project-- probably because I'm not using metallic thread and I don't have eight bajillion feathers to sew on the thing.  I should have it completely finished by tomorrow. 

I never realized, by the way, just how many ways there are to pretty up the decapitated and defleshed heads of dead people until I started looking at reference pictures in order to design a sugar skull of my own.  This thing was seriously fun to play around with (though admitedly kind of creepy) so I might revisit the theme at one point or another.  Maybe I'll make a clutch for myself too!

Also it will give me an excuse to keep not working on Ellen's peacock.  I'm not ready for metallic thread again for a while.


~Jess

In Which I Lose Track Of Time

I got sidetracked with a sewing project tonight before blogging-- I just wanted to get one more thing done. 

And then I looked up and realized it was one in the morning.

So my embroidery ate your blog post tonight.  Sorry.

In Which I Ask Questions I Can't Answer And Buy Ellen A Shirt

I bought Ellen a shirt today.

"Ellen," for those of you who don't know, is the thirteen year old girl we are in the process of adopting from Thailand.  I was thinking about her today as I wandered around the clothing section of Target, having finished my other errands. 

We have a lot of information about our daughter-- much more information than many children from international adoption ever learn about their backgrounds.  We know the exact time and date of her birth, how much she weighed and many details about her family.  We know which hospital she was born and treated in and what ward she stayed in until she moved to her orphanage.  We know what therapies she's gone through and when she had all of her surgeries.  We know why her parents chose to make an adoption plan.

Because our adoption agency has been advocating for her since she was four years old, we also know a lot of things about her personally-- not just her background.  We know she's friendly and outgoing, that she has many friends at school, that her favorite food is papaya salad and her favorite color is blue.  We know she's missing a tooth.  She is on track for a child raised in an institution but delayed when compared to children outside the orphanage, which is not surprising.  She's right handed.  She once performed a wheelchair dance for the Princess of Thailand's birthday.  Her favorite subject in school is English.  She likes to play chess and watch Thai soap operas.  She's amazingly beautiful and has the most incredible, joyful smile I've ever seen on a human being other than Connor.

But there are so many things we don't know about her.  For one thing, we don't know when she's coming home.  I have no idea if the shirt I bought her today (I'm nesting already, which is not a good sign considering how long we have to wait) will fit her by the time we travel to meet her, which probably won't be for many months.  We'll never see a picture of her taken before the age of three and a half.  We don't know what she wants to do with her life, what she's been told about where she comes from, what she thinks her future will be.  We don't know what she thinks about the idea of adoption. 

I know that if I were in her shoes and was told that at age thirteen I'd be leaving every single thing I knew behind to live in a strange country with people I'd never met, I'd probably be terrified.  Terrified and angry.  Thirteen is a difficult age for everyone: certainly I remember it as being traumatic, and I enjoyed the privilege of growing up in an extremely stable, healthy family.  It's impossible for me to know what she's going through.  Right now she doesn't even know we exist, and she's probably preparing for a different transition.  It's likely she's given up on the idea of ever being adopted, and I'm sure she's well aware of the fact that in just a few short years she'll be aging out of the orphanage and leaving the only home that she's ever known.  It's a future probably just as terrifying as the thought of adoption; while I don't have statistics specifically for Thailand, in general the statistics related to children who age out of institutional settings (even in the United States) are extremely grim.

How do I help her piece together the two vastly different worlds she'll be bridging?  How do I prepare for a child who will be in some ways much younger than her peers and in other ways far, far older?  How do I help her preserve and honor her rich culture and heritage while preparing her to succeed in the mystifying, often-cruel world of the American teenager?  These are questions I have no answers for.

Take the seemingly simple problem of a name.  The English translation of Ellen's name is twelve letters long and difficult for the average American to pronounce, let alone spell.  However, it's her name, and so our plan was to keep it as her first name and give her an American middle name.  That way she could choose to use the middle name if she wanted to, but we wouldn't be callously changing her name with no thought for her age or sense of identity.  After reviewing her paperwork, however, we've discovered that the way the name is spelled and pronounced was changed by the orphanage when she was about eight.  The original spelling and pronunciation-- which is on her birth certificate and will be on her passport and all of her adoption documentation-- sounds extremely close to a vulgar phrase in English which would cause her a lot of embarrassment if she goes by the name here.  So what do we do?  Do we change her original name (which was given to her by her birth parents and has an extremely strong meaning in Thai) to the name that the orphanage has been calling her for the last five years?  Do we stick to our original plan and hope that she can weather the potential teasing her birth name will probably trigger?  Do we give her, or let her choose, an American name for a first name and make her Thai name her middle name, running the risk that she won't understand or accept our reasoning and making her feel as if we are trying to isolate her from her past?  What's the right thing to do here?  What will she want us to do?  None of the little bits and pieces of information we have about her can help us answer this question.  It's impossible to know.

I desperately want to ask her opinion about this and a thousand other things, but it will be months before she even knows that we exist.  I wish I could comfort her and give her some answers of her own as she confronts the big questions she's probably asking about what the future will hold for her.  There's not a thing in the world I can do right now, though.  I can't answer any of her questions or mine, however badly I wish I could, no matter how long I wander around and think about them. 

So instead I bought her a shirt and went home. 

I hope it fits.

~Jess

In Which Connor Sees The Neurologist

Connor had his neurology appointment early this morning.  It was the first face-to-face appointment he's had with them in about four months, so it was just about time.  They actually bumped it up-- we were due to go in mid February-- but since Connor's had a couple of bouts with illness that triggered a lot of seizures they figured it would be better to get us in sooner and made special arrangements. 

So he went in today and we had a discussion about his overall seizure management, how his seizures have changed in the last few months (almost zero mouth-to-mouth needed!) and what we want to do about his febrile seizures, which don't seem to be going anywhere any time soon.

So we're going to go on a more strict regime of Ativan if Connor gets sick.  Rather than using it once to break the cycle of seizures, we'll be using it to keep his seizures entirely under control until he's no longer sick.  That way hopefully his recovery won't be as hard and he won't stay sick as long because his body isn't totally exhausted.  Otherwise his meds are staying the same.  All in all it was a pretty good appointment.

We had his medication levels drawn (by finger prick, and he didn't cry at all!) and then we were off to the bookstore, which is Connor's (and my) reward for an appointment at Children's-- especially one that involves a blood draw.  Connor chose a book called The Pirate Cruncher, which he chose over a dinosaur book.  I cracked it open and was thrilled to discover that the monster in it looks suspiciously like a kraken, which due to my derby name I am now completely obsessed with. 

I was even more thrilled to discover that the kraken wins. 

Um, anyway so we did that, and then we stopped by Fran's to pick up some caramels for Jeremy, and then it was off for the house.  So overall it was a pretty productive day!

~Jess

In Which Connor Is A Very Good Actor

Connor had physical and occupational therapy today, after about a week of doing next to nothing because of the eight bazillion (only a slight exaggeration) seizures triggered by his illness.  So despite acting like he was perfectly fine right up until the second we got into the therapy play room, the second we crossed the threshold of the doorway he suddenly became The Most Tired Boy The World Has Ever Known. 

Connor likes to pull out his TMTBTWHEK (how's that for an acronym?) act whenever he really doesn't want to do something.  Basically he pretends like he's falling asleep that very second.  If we don't fall for it and let him stop doing whatever evil activity we've dreamed up, then he starts cycling through his signs.  "Want eat!" he'll say.  "Potty!  Tired!  Sad!" Anything that might possibly get him out of doing what we're making him do.  As a last resort he'll ask for a long series of Love Butts (a gentle head butt-- his version of a kiss) or he'll act extra adorable and try to snuggle.  If nothing works he'll usually heave a giant sigh and resign himself to the activity, since evidently he's not going to manage to get out of it.

I suspect that Connor has learned how to work the system.  His therapists have known him for a while and are well aware of his capabilities so he doesn't try his tricks out on them often, but I've seen him convince newcomers that he is utterly unable to voluntarily touch and/or interact with anything.  That way they'll do it for him, which he prefers.  I do my very best to resist his wily ways even when he's at his very cutest because of course he needs to learn how to be as independent as possible.  Sometimes, though, like when he's getting over an illness, it's hard to tell just how much of it is fake and when he really is tired and not feeling great.  In that case I tend to error on the side of caution.

So we dragged him through his hour of physical therapy.  He spent the last ten minutes or so of it pretending to sleep on my lap.  You could tell it was fake sleeping because every once in a while he'd crack open his eyes and see if I was paying attention to him.  If I started talking to him then he'd close them again really quickly.  Occupational therapy never really got off the ground because he simply refused to do anything at all.  Still, he'd been perpetuating this behavior way longer than he normally does, and he had been sick the week before so there was certainly a chance he wasn't faking it.  We gave up after about twenty minutes and I took him home, convinced that he really was tired and would no doubt crash once I put him down for a nap.

As soon as we got home suddenly my child was bright-eyed and bushy-tailed.  Nap?  What nap?  Here it is almost 11:00 at night and the kid is still awake.  He definitely pulled a fast one on me.

Oh well.

~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

In Which Connor Continues To Be Better And I Pick A Derby Name

No seizures today!  Connor still had a bit of a fever this morning, but he was obviously doing a lot better.  We're going off the Tylenol tomorrow and we'll see how it goes.  I'm happy that the little guy is on the mend!

We had our team photo for derby today, which was completely awesome.  I've chosen an official derby name-- I am now skating for the Trampires as Gita Kraken!  My number is 20K Leagues.

I was planning on skating under the name Lee Viathan, but there's already a Vitamin V on the team.  "Lee" and "V" sound really similar when you're yelling them in the middle of a noisy bout.  So I went with another gigantic sea monster instead, since I thought the general theme was appropriate. 

After all, if there's one thing more terrifying than a gigantic evil squid, it's a gigantic, sort of promiscuous, evil undead squid on roller skates.

For those of you who have no idea what the heck this name is in reference to (and I know you are out there), it's a play on the expression "get cracking."  And also it involves one of these.  And my number, 20K Leagues, comes from Jules Verne's novel 20,000 Leagues Under The Sea, in which not just one kraken, but seven kraken make an appearance.  Which is about seven more kraken than I'd generally care to meet down a dark alley.

So anyway, we had our photo shoot and I was dressed appropriately.  Dressing appropriately for the team picture in my case involved a black shirt and skirt, red tights, hair that was teased about four inches off the top of my head and rolled in a sort of crazy punk rock bouffant style, really heavy black eyeliner and mascara, red lipstick, and an awesome red octopus necklace (made by another derby girl!) to complete the ensemble.  Oh, and my skates, of course.

It felt sort of like I was dressing up as my alter ego.  Who is way, way cooler than me and actually able to pull off four-inch high hairdos, really black eyeliner and roller skates-- something that I would normally never be able to do.  I don't have any pictures of me in my glorious Gita Kraken attire, but when one goes up on the Dockyard Derby Dames website I'll be sure to post a link to it so you can see me in my crazy getup.  Also then you can check out the other lovely ladies on my team, who collectively manage to be gorgeous and unbelievably terrifying all at the same time. 

So from now on, whenever I strap on my roller skates you can call me Gita!

~Jess

In Which Connor Feels Much Better

Connor only had one seizure today; a sure sign that the Tylenol is doing its job.  He was much happier and had a lot more energy too, though by the end of the day he was pretty tired.  Evidently being tired doesn't necessarily equate to going to sleep, though.  It's almost 11:00 at night and he's still in there blowing raspberries on the back of his hand.  This is a skill he acquired recently and he takes every opportunity to practice it that he can.  I particularly love it when he misses his hand and just spits everywhere.  Usually he aims for my shirt.

At any rate, now we've entered that weird limbo state where we get to play Russian roulette with Connor's Tylenol.  We know he's been running a low-grade fever for the last few days but doesn't really seem to have any other symptoms that he can tell us about.  He probably has a sore throat, because Jer thinks he's getting sick with the same thing and that's what he has, but Connor doesn't have the vocabulary to tell us that his throat hurts so it's hard to tell.  We know that if we stop the Tylenol and he's still running a fever, he'll start having a bunch of seizures again.  However, we don't want to send him to school on the Tylenol because then it's impossible to tell if he's sick or not and we don't want to infect the rest of his class. 

It's a quandary.

I know he's still running a fever as of tonight because he was a little late getting his last dose of Tylenol and his temperature crept back up to a measly 99.5 degrees.  So he'll be home from school tomorrow for sure.  After that we'll just have to see.  It seems really ridiculous to keep a kid home who doesn't have any other symptoms for what wouldn't even be a fever in a typical child, but Connor likes to do things his own way, I guess, and in Connor's world 99 degrees is more than enough of a fever to throw his whole body out of whack.

Oh well.

~Jess

In Which Connor Has More Seizures And I Hate Technology

Connor was running a measly 99.0 degree temperature today, and had five seizures as a result.

He was probably running a temperature yesterday and the day before too, but I didn't know that because I'd bought a new thermometer.  This is one of the nice ones that the hospitals use where you run it across your forehead-- I figured it would be a lot better than the armpit or rectal method, which is what we've used with Connor in the past.  Only it kept giving me really crazy readings that were obviously wrong, and I couldn't figure out why.

Yeah, so it turns out there's a protective cap over the sensor of the thermometer.  And you have to take it off for the thermometer to work.  Luckily it only took three days for me to figure this out.  Well, actually it was Jeremy who figured it out.  After he looked at it for about three minutes.

Technology and I are not the best of friends.

Anyway, so Connor's had fourteen seizures in three days, which is not exactly wonderful.  He's sleeping a lot, which is probably what his body needs right now.  This kind of thing is pretty hard on him-- it makes me exhausted just watching.  But we're plugging him full of Tylenol now and that should help.

Other than all the seizing and the mild fever he doesn't really seem all that sick.  I'm hoping that means he'll get over this thing quickly!

~Jess

In Which Connor Is Still Sick And I Try To Make Truffles But Eat Everything Instead

Connor had another rough day today; he had five seizures, which is not so hot.  I'm hoping that tomorrow he'll be feeling better, because that's a lot of seizures for his little body to handle. 

Poor little guy.

Jer was off work today, so I took the opportunity to run some quick errands I'd been intending to take care of while Connor was in school (which obviously didn't happen today) and then this evening I went to an art gallery showing where a friend's work was being exhibited.  I ended up buying a beautiful linocut print, which was small enough that I might be able to find some wall space for it.  I felt kind of guilty leaving a sick Connor at home, but I'd been planning to go to the showing for a while and Jer is more than capable of taking care of Connor without me.  Plus after two days of having a child use me as a giant tissue, I badly needed to get out of the house. So I ended up going, and just didn't stay very long.

I stopped by the grocery store on the way home and picked up what I needed to make a large batch of truffles.  I've got a birthday party to go to tomorrow, and figured I'd take a few different kinds.  So I made pomegranate, blackberry liquor, and cinnamon chili ganaches and put them in the refrigerator to set overnight.  Truffles are not terribly difficult to make, but they're hard for me because I want to skip the whole truffle making part and just eat the ganache directly out of a bowl with a spoon.  If I'm lucky I'll manage to restrict myself to only eating about half the bowl.  Of each.  And then I'll have to test the truffles once I dip them too, to make sure they aren't poisonous or something.  By the time I'm finished I'll have used about five bags of chocolate, and the people at the party will be lucky to get four or five truffles out of it.  But hey, I'll be happy.  And also about fifteen pounds heavier, but that's beside the point.

I mean, I'm under stress, right?  Having Connor sick always makes me stressed out.  And when I'm stressed out, I want to eat my weight in chocolate.  And now there are three giant bowls of the stuff sitting in my fridge, calling me.  What did I expect would happen?  I really didn't think this thing through very well.

Connor normally loves eating the ganache with a spoon too, but right now he's too sick and his stomach's too queasy for that.  I might have to save him a little bit for when he's better.  Or maybe I'll just eat his share for him.  No use in letting it go to waste, right?

~Jess

In Which Connor Is A Saddy Sadkin

Well today was not particularly fun.

Connor woke up this morning and seemed a little quieter than usual.  We went through our usual morning routine and I attributed it to him having slept in late; I actually had to wake him up, which is very unusual for him.  We got into the car and started down the road to school. 

About two streets before we got to the turn-in for school, Connor had a seizure.

It was one of the still-breathing kinds, thankfully, but it was long enough that he had a pretty good postictal state going by the time I strapped him back into his chair and started off towards school again.  I figured I'd see what he looked like when I brought him in the classroom and decide whether or not to bring him home with me.  For some of the smaller seizures he's been able to stay at school.  After about five minutes, which he spent trying to fall asleep in his teacher's arms, we decided it would be best to take him home.

This ended up being a very, very good thing.

He started getting the chills about an hour after we got home, and for the next eight hours or so I was the parent of a sad, miserable, clingy little boy.  He was obviously feeling under the weather, and while he didn't have a temperature his seizure threshold ended up being lowered anyway, so by the time the day was over he'd had four.  Not fun.  Basically he spent the entire day clinging to my shirt and doing one of three things: crying, sleeping, or seizing.  So obviously there will be no school tomorrow.  I'm hoping this is a short bug and he'll be over it quickly.

I'm amazed at how exhausting eight hours of sitting and doing nothing really is.  Really, what does one do when confined to an armchair for three or four hours at a time?  Especially when you can't rest anything on a substantial portion of your lap without getting drool and snot smeared all over it by an unhappy toddler?  I ended up spending about four hours on facebook looking at other people's pictures, and also I read a book.  Or two.  But I swear that little guy just sucked all the strength from my bones.  It's funny how the more active you are the more energy you tend to have.

At any rate, hopefully tomorrow will be better!

~Jess

In Which Connor Goes To Therapy And Has Homework

Connor had physical and occupational therapy today, like he does every Wednesday.  Today we were working on a couple of issues that have been concerning me of late.

The first issue is Connor's scoliosis.  Scoliosis, for those of you not familiar with the term, is a curvature of the spine.  Connor has always had a slight curve to the left because that's his weaker side, but since he's started having seizures that involve left-sided paralysis the curve has become more significant.  This is because for up to two days at a time after a seizure none of the muscles work over there, so he slumps pretty significantly to the left.  He also does it now whenever he's tired or isn't feeling well.

As a result, he's got a visible curve to his spine and one of his shoulder blades is rotated out.  Thankfully his spine is still flexible and the curve is still fairly mild, which means that right now he doesn't need surgery.  We're still planning on getting him some form of orthotics to help prevent the curve from getting worse; he's got a consultation for that on Monday.  In the meantime, our physical therapist showed us some positions and stretches we can use with Connor at home to help out his flexibility.  While I'm not concerned about the aesthetic issues involved with scoliosis, I want to make sure that Connor's spine is as healthy as possible and that his lungs and ribcage continue to develop properly.  I figure prevention is the best route so that we don't have to turn to surgical intervention later if the scoliosis continues to develop unchecked.

After PT we had occupational therapy, where we tackled the second issue.  We've been working with the iPad a lot at home, and as a result Connor is using his pointer finger more and more.  However, he's having trouble switching back to using his palm with his other toys.  Keep in mind that Connor doesn't like touching things; his palm is especially sensitive to touch and he avoids it if he can.  Now he has a fantastic toy that responds with him having to do as little as possible.  Why not use the same technique for all the rest of his toys?  So what we're seeing is that instead of grabbing or banging toys like he used to, he's instead barely touching the activating part of the toy with one finger and then expecting something to happen.  Because after all, it works with his iPad!

While it's awesome for us to be seeing that finger isolation, we don't want Connor to start losing the progress he's made in the desensitization of his palms.  So it looks like I'll be balancing out Connor's daily work on the iPad with sensory play focused on his hands.  Things like immersing his hands in various substances that he doesn't want to touch.  No doubt he'll be absolutely thrilled.

It's hard sometimes to know exactly how full to make his days; we can always be working on something.  I usually try and pick two or three issues to focus on at one time, and that way he doesn't get too overwhelmed.  I think we've got our goals set for the next few months; now I just have to figure out some fun ways to get us there! 

~Jess

My monthly post for Hopeful Parents is up today!

In Which Connor Goes To The Ophthalmologist And Is Given Magical Powers Of Super Cuteness

Connor had an Ophthalmology appointment today at 11:00.  I was originally planning on taking him to school and then picking him up an hour early, but he foiled that plan by deciding to stay up until four in the morning.  School and a doctor's appointment on three hours of sleep would be a disaster for the little guy.  So instead I called him in sick and gave him a little extra time for shuteye. 

Connor sailed through his appointment-- he opened his eyes on command and let the doctor look at them, and he didn't even cry when they put the eye drops in, though he wasn't too excited about the whole thing.  He's getting to be such a big boy; can you believe he'll be five in a few short months?  How in the world is he growing up so fast?

And his behavior wasn't the only thing that looked great-- his eyes looked pretty good too!  The doc said that while Connor obviously still has Duane Syndrome (which is of course permanent) his optic nerves look healthy and while he's farsighted and has a bit of an astigmatism, he doesn't need glasses. 

This is a huge relief to me, because I can't begin to imagine how we would keep glasses on this kid. 

You know, sometimes it's really nice to be able to go to an appointment and get a clean bill of health.  It doesn't happen very often with Connor; usually we're going in because something needs to be fixed, a referral for equipment needs to be made, etc.  But every once in a while we have a doctor who says "Okay!  Looks good-- see you in a year!" and they send me off without a huge list of things I need to get done.  It's extremely refreshing.  I suppose that's what doctor's appointments mostly look like to parents of kids with typical children. 

It's a foreign concept for me, but I wouldn't mind a few more going as smoothly as this one did!

Of course Connor had his eyes dilated, and though they didn't give us any sunglasses those things wouldn't have stayed on his head anyway so they would have been very little help.  Luckily it was a very overcast day so it didn't matter.  Connor has a very strange effect on people when he has his eyes dilated; I think it's similar to those Japanese cartoons with the characters who have very small stature and hugely exaggerated eyes.  Basically he becomes Connor in chibi form, and his already extreme cuteness is magnified tenfold.  No one can resist him; we met Jeremy for lunch at a local restaurant and were swarmed by people who basically thought Connor was the most adorable thing they'd ever seen.  There was one elderly gentleman in particular who practically climbed into Connor's wheelchair with him, he was so overcome.

I didn't take any pictures, though, because one of the side effects of overwhelming eye-dilated cuteness is that it makes your eyes sort of light sensitive, and it was cloudy enough I would have had to use the flash.  It's probably a good thing though-- that sort of cuteness could be a powerful weapon in the wrong hands.
If I ever have any desire to take over the world I know exactly how I can do it.  I'll just take Connor to an eye doctor appointment right before I begin my world conquest.  Everyone would be so busy squealing over how cute the little guy is that they'd let me walk in and become the Overlord of The World without a fuss.  And then all the chocolate in the world would be miiiiiiine!!!

I'd better start practicing my evil laugh.

~Jess

In Which Connor Is A Finger Painting Godzilla

Today I had a number of creative projects to work on, so that meant it was finger painting time for Connor! 

I usually like to try and break things down that way so we're doing the same sorts of activities.  If I'm cleaning, then I make sure he "helps" me fold laundry and put small things away in his toy bins.  If I'm cooking, then he's got a pot and a spoon to bang on it with or his wooden vegetables.  If I'm drawing, painting or sewing like today, then he's finger painting or staring at the playdough I insist on putting on his tray like it is a live snake and it will kill him. 

Usually I give him a choice between the two.  Guess which one he always picks?

Watching Connor finger painting is like observing a reenaction of Godzilla stomping through Tokyo.  He doesn't want to initially touch the paint so you have to put his hand down in it first, but once it's already on his fingers it's a whole different story.  Basically he winds up, slams a hand down on the paper and then yells at the top of his lungs for a second before picking it up and doing it again.  I don't try to talk to anyone on the phone while Connor is finger painting, because the combination of WHAM!!!  "AHHHH!!!" WHAM!!! "AHHHH!!!" in the background is kind of distracting while you're trying to hold a conversation. 

Then every minute or so he takes some time to shake all of the excess paint off his hands in an attempt to cover as much surface area in our house as possible in paint.  I use a drop cloth and his chair sits well away from our table and any other furniture while he is painting. 

And when he's tired of doing that, he simply wipes the excess paint on his face and hair.

So after Connor was done creating his masterpiece, he and Jeremy took a (much-needed on Connor's part) bath.  We have to fill the bathtub up before putting Connor in now, because for some unknown reason he's decided he's terrified of the faucet running and cries hysterically until you shut it off.  Otherwise he enjoys having a bath, though usually we use his shower chair instead.  He's heavy enough now that it's dangerous for me to try and give him a bath by myself.  Jer was off of work today because of the holiday, though, so they got to spend some time splashing in the tub together. 

We also changed out the little guy's g-tube today.  We get one with our feeding supplies once every three months, and we change them out at home.  It's really nice to not have to make a trip to the doctor to change them, and as long as we wait until his stomach is relatively empty it's not very messy, either.  There's a nasty bug going around right now, and so we're happy that we're able to avoid a trip into the doctors any time we can.  From past experience, I'd say one of the best places for Connor to pick up a nasty illness is at the doctor's office.

All in all it was a pretty good day!

~Jess

In Which Connor Has A Good Day And I Love Socks

We got a break from seizures today, which was lovely.  Connor was a little tired, but otherwise he seemed to be in good spirits.  Hopefully by tomorrow he'll be back to his usual happy self.

I'm really relieved that we didn't see any more today because I'm hoping that means he's not going into another cycle of them.  We'll just have to see how he does tomorrow; he's out of school for the holiday so I'm sure we'll be finding some fun things to do.  I'm thinking that I might bring out the fingerpaints while I work on a few art-type projects of my own.  He's getting a bath tomorrow anyway, so it won't matter if he completely covers himself in paint like he usually does.  Usually by the end of fingerpainting he looks like a rainbow gave him a big hug and affectionately mussed up his hair.  Repeatedly.

In other news, I went out today and bought a couple of red shirts for scrimmages and practice (the Trampire team colors are red and black) because before I ran my errands I only had one.  And I'm not remotely interested in doing laundry every single day.  So now I have three, which is much better.

I also bought myself another little swingy skirt for derby as well.  I would probably be a bike shorts sort of derby person, but I wear snowboarding pants when I skate because I fall backwards a lot, like my tailbone the way it is, and want it to stay intact as long as possible.  You can't wear the snowboarding pants by themselves, because they are basically pads held together by black mesh and there are some key areas that are, shall we say, slightly overexposed.  Hot pants just look weird with them, besides which I'm not really a hot pants sort of person anyway.  Putting bike shorts over them makes it appear like I am wearing a rather odd, bulky diaper.  So I wear bike shorts layered with some sort of skirt like the one I bought today, and then it just looks like I have an enormous rear.  I'm fine with that.

Anyway, so the derby shopping is seriously hard to resist.  For one thing, I seem to think that I need every pair of knee high socks that exist in the entire universe.  All of them.  But I am doing my very best to curb my sock habit by reminding myself that I can save that money for new skates. 

I'm not addicted to derby or anything.

~Jess

In Which I Don't Eat Bacon

Connor had two more seizures today, which means that we're back in another run.  Glorious.  He hasn't shown any indication of being sick yet, so we'll just have to watch him and see.  I'm kind of hoping he's getting sick, as horrible as that is, because if he's not it means his medication change only worked for about a week.  That would not be so hot.

Hopefully we won't see any more tomorrow. 

I spent part of the day today getting some things done around the house and running errands while the little guy hung out with Jer.  Then I made a big pot of potato/carrot/parsnip soup with bacon in it while Jeremy was at the gym and Connor was sleeping off seizure number one.  The hardest part of making potato soup is cooking the bacon and then not eating any of it until after it is in the soup.  Seriously, I sort of wanted to skip the soup making part and just eat all of the bacon.  Jer probably would have been kind of sad about coming home to the bacon all eaten, though, so I restrained myself. 

You know you love somebody when you forsake bacon eating for them. 

I cooked dinner early because around four in the afternoon I left to go watch a roller derby bout up in the Bremerton area (a town a little over an hour away from me) with some friends.  I figure that right now the more derby I see, the better; it'll help me learn strategy, see how the referees call games, and just make me an all around better player. 

Plus I just love watching roller derby!

Anyway, the bouts (there were two back-to-back) were awesome and I had a blast.  I can't wait until it's me skating out there!

~Jess

In Which Connor Discovers A New Food Of Awesomness And I Never Want To See Another Sequin Ever Again

Today I fed Connor a little bit of my Phish Food (chocolate ice cream with marshmallow caramel swirls and fudge fish) Ben & Jerry's ice cream and he attempted to eat his weight in the marshmallow fluff.  He doesn't like ice cream because his teeth are cold sensitive, but the marshmallow fluff was evidently a strong enough draw that he didn't care about how it made his teeth feel.  So he'd open his mouth, lunge for the spoon like some sort of ridiculously adorable platinum blond piranha, and then make this horrible face for a few seconds until the ice cream melted.  Then he would look at me, look at the spoon, sign "go" and pointedly open his mouth again. 

Silly little guy.

He had a small seizure today-- it was about a minute or so long-- so I think we're back to our one-a-week schedule.  Because of the seizure, he went to bed early despite the sugar high all the marshmallow fluff caused: around five or so in the evening.  I'm expecting him to wake up around five in the morning as a result, bright-eyed and bushy-tailed.  No doubt I'll be thrilled.

In other news, I spent some time working on Ellen's stocking again today.  You can see I'm over the halfway mark on the tail now-- and it's about time!  I've reached the point where I don't really know why I thought this was a good idea in the first place and I never ever want to do this again. 


Worst.  Idea.  Ever.



Oh, and also I hate sequins.  Not that any of you didn't see this coming given how I ranted the last time I made a stocking.  Feel free to say I told you so. 

You can really start to see how the tail is going to look when it's finished.  I think it'll be really pretty, even if currently I hate it with a fiery, burning passion.

And people say sewing is such a relaxing hobby.

~Jess

In Which My Daughter Turns Thirteen

Our daughter is thirteen years old today!

I'm hoping that this will mark the last birthday she has without our family.  With any luck by this time next year she'll be celebrating with us! 

Though we don't have any contact with her yet, we wanted to get her a gift anyway.  Either we'll send it over with our adoption agency when they go next time, or we'll hold on to it and give it to her when she is here.  While we weren't able to go out together today (because I had roller derby practice-- woohoo!) hopefully we'll get the chance to go out this weekend and pick out something for her.  I think we're leaning towards a necklace or a bracelet; something small, sturdy and appropriate for a thirteen year old who's not used to having possessions of her own. 

I was really hoping to have Ellen's Christmas stocking finished by today, but it just didn't happen.  I'm about halfway through the tail on the peacock, so it's coming along slowly.  I figure by this time next month I'll probably be done unless I get completely fed up with it and have to put it aside for a while.  I'm already thinking about the next stocking I want to do; I figure I might as well make several so when people in my family have kids I'll just need to put the name on, line them and sew the whole thing together.  The next one will probably be a wee bit simpler, though.  I'm thinking a closeup of a yeti in a snowstorm. 

Seriously, though, the next stocking will probably involve yetis.  Because yetis are awesome.

So anyway, Happy Birthday, Ellen!  Thirteen will be a big year for her; and she's embarking on two great adventures: a new life and the start of her road to adulthood.  It'll be a tremendous challenge, but I think there are exciting things ahead for her.

I can't wait to be a part of her life!

~Jess

In Which I Am A TRAMPIRE!!!!

So you are now reading the blog of an official DOCKYARD DERBY DAMES TRAMPIRE!!!

I am having to physically restrain myself from writing this entire blog post LIKE THIS!!! by the way.  Because seriously, that's how excited I am.  However, I understand that it would be sort of painful to read, so I'm sparing you that sort of post. 

Be appreciative, people.  You have no idea how difficult it is for me to form actual coherent sentences at this point.  I've been mostly reduced to capering around in the middle of my living room gibbering in excitement.  I was doing it in our bedroom, but I got kicked out of there because I was being a tad bit too loud.  Also I may or may not have jumped up and down on top of our bed yelling "I'M A TRAMPIRE!!!" at the top of my lungs while Jeremy was trying to sleep. 

I admit to nothing.

Anyway, so obviously I made a roller derby team!  We had our draft interviews tonight and found out at the end of the evening.  I spent most of the day working myself into a crazed state of nervous excitement and watching the hours absolutely creep by.  I swear there were at least four extra hours in the day today.  By evening I'd pretty much convinced myself there was absolutely no way I was making a team, but I should go anyway and offer everybody else moral support.  When my name was called at the end of the night it actually took a second to sink in because I was half-convinced I'd deluded myself into hearing my name called when it was in fact someone else's.

But it was my name, and so now I'm on a team and everything!  And it is a team of complete and total awesomeness, too, which certainly doesn't hurt anything.  Seriously, these girls are my heroes.  I've got some big skates to fill!

Now I know that I told you I'd announce my derby name tonight if I made a team, but I'm waffling again.  I'm kind of bad about that.  As soon as I know what it is for sure I'll tell you, I promise.  Cross my heart.

So in conclusion, TRAMPIRES!!! WOOOOHOOOOO!!!

~Jess

In Which I Have Roller Derby Drafts Tomorrow And It Is Snowing

Seriously, my sister takes awesome pictures.

It's snowing outside right now, which is lovely.  I'm perfectly happy to welcome the picturesque white stuff just so long as it's all melted by tomorrow evening so they won't cancel roller derby drafts.  If I have to wait another week to find out if I'm on a team I'm relatively sure it will kill me.

Okay, so maybe that's a slight exaggeration.  I might barely survive, though I'd probably be horribly maimed or something.  But seriously; we New Bruisers (as the derby hopefuls are affectionately called in our league) have put three months of sweat, tears and (occasionally) blood into preparing for tomorrow, and so the mere thought of drafts being postponed makes me start hyperventilating just a little bit.

So provided the weather cooperates, I'll be going in for draft interviews tomorrow.  Hopefully by the end of the night I'll know whether or not I made a team, and if I did make one (oh happy day!), which team I'll be joining.  There are four teams in my league: the Maurading Mollys, the Trampires, the Femme Fianna, and the Hellbound Homewreckers.  All of them are looking to potentially pick up a few new skaters, and all of them are awesome.  I'd be thrilled to make any one of them!

If I don't make a team this round of drafts, it's certainly not the end of the world.  That just means that I need more skating experience before I can play with the vets, and so I'll continue to practice with the New Bruiser pool until the next round of drafts.  We'll just have to see how things play out.  Either way I still get to keep skating, which is great news as far as I'm concerned.  Not that I would stop skating regardless.  Really, I'm seriously addicted at this point.

What derby girl could be complete without an awesome roller derby name?  I have my gigantic name pool narrowed down to five potential names, and which one I'll ultimately choose as my alter-ego will depend entirely on what team I ultimately (whether this round of drafts or later) end up skating for.  I'm keeping them under wraps for now, but if I make a team tomorrow I'll make a final decision and announce it here. 

So wish me luck tomorrow, and bring on the warm weather!

~Jess

In Which I Feel Much Better Except For The Fact That All The Parts Of My Body Hurt

I can't even tell you how awesome it is to have my happy little guy back!  Obviously the medication is doing its work; we've been three full days without any seizures now.  He's completely back to his usual plucky self; even the way he sits in his wheelchair is different.  He's not slumped over in it to one side any more like he was on day three of his bad seizure run.  Those things take a lot out of him.

I also feel much better; I don't generally sleep very well when the little guy is having a bunch of seizures, and the constant adrenaline rushes take a big toll on me too. 

At least I feel better mentally, anyway.  Physically I feel sort of like I've been beaten with a sack full of doorknobs.  My body hasn't quite recovered yet from all of that heavy lifting I did on Saturday.  It wouldn't have been so bad if I hadn't gone to that two hour endurance practice on Sunday, and then also went tonight to derby practice with one of the teams I might potentially be drafted by (drafts are on Wednesday; keep your fingers crossed for me!).  I sat down in this chair a couple of hours ago, and I'm not entirely sure if I'm going to be able to get up out of it. 

But all of the exercise is good for me!  Not only will I end up a better skater, but also it allows me to feel less guilty when I'm consuming massive quantities of chocolate. 

Not that feeling guilty about it would stop me.  Actually the exercise may make me eat more chocolate since I can say things like "We had a really hard practice yesterday, and I'm sure that I burned enough calories to cover these 27 chocolate covered cherries.  And also chocolate helps the muscle healing process!  Everybody knows that."

It totally does, too.  I just finished a cup of hot chocolate and I feel better already!  Now I just have to figure out a way of getting more without leaving my chair.  Regaining the ability to move is going to take at least one more cup. 

Maybe two.

~Jess

In Which Everything Is Fine, I Swear

Everything is fine!

Connor had no seizures yesterday-- looks like the medication is doing its job!  He's completely back to his usual happy-go-lucky self, which I am very happy about.  So he wasn't the reason you didn't get a blog yesterday.

No, the reason you didn't get a blog was because I was helping a friend move and didn't get back to the house until almost three in the morning.  And while I love all of you very dearly, any blog that I would have produced at that hour would probably be totally incoherant.  So now that I'm awake (Jeremy let me sleep in because he is wonderful like that), you get a blog.  Sorry about that.

At least an hour and a half of yesterday, by the way, was spent in transit to my friend's new house.  I mention this because my copilot in the car was a parrot named Jasmine.  I don't remember what type of parrot Jasmine was-- one of the medium sized green varieties-- but her main distinguishing characteristic in the car was that she was loud.  Yes, Jasmine was gifted with the ability to create sounds at volumes that rightfully should have been impossible given her lung capacity, and she delighted in making them directly in my ear.  I'm not sure I would have survived the car trip with my hearing intact if not for two things.  The first was that Jasmine apparently has an ear for Irish fiddle music.  I'll say one thing-- the bird has good taste.  When in desperation I switched my CD player on, she climbed over to the side of the cage near the radio and listened intently.  She had a tendency to try and join in on the chorus, but otherwise it cut down on the shrieking considerably. 

The second thing was that I stopped and ordered some chicken fingers at a drivethrough.  Apparently she took this as an implicit threat, because I didn't hear a peep out of her the rest of the trip.

At any rate, Jasmine and I got along much better after that, and the move was completed without further incident.  Really she was a very nice bird, and once she got over the excitement of being in the car she was a sweetheart.  I have the feeling that in other circumstances we would have gotten along very well.  But if our daughter Ellen ever decides she wants a parrot we'll either be getting her a quiet variety (and I'm relatively sure given my experience of parrots that such a bird does not exist) or seriously beefing up the sound insulation in her room. 

Or better yet, sticking to gerbils-- however unappreciative of my music choices they may be! 

~Jess

In Which Connor Feels Much Better And I Sew Some More

Well, Connor is feeling much better today!

Other than the insomnia, that is.  Currently it's past eleven at night and he's still lying in there happily shrieking away to himself at top volume.  Good thing I'm not storing my crystal glasses anywhere near his room, because I'm pretty sure they'd have shattered by now given some of the truly impressive notes he's been hitting.  At least he's in a good mood! 

What's pretty awesome news is that I didn't see any seizures from him today.  He may or may not have had one at school-- it was up for debate-- but I didn't see any, which made the day a definite improvement over the previous three in my book.  Also by the afternoon I started to see hints of his usual sunny personality rather than the sad, exhausted kid who's been living in my house lately.  There he is wearing my sunglasses and attempting to kick the camera.  Evidently he's not a fan of Paparazzi Mom.

Ellen's stocking is coming along slowly but steadily. I've finally sort of figured out how to make the gold metallic thread do what I want it to, so now I'm not actively wanting to kill people and blow things up, which is an improvement.  Here's a picture for you of how things are coming along; please disregard the random green sequin lying on top of one of the gold swirls on the stocking, as it's not sewn down.  I have no idea where it came from, as I'm not using green sequins on this stocking.  Weird.  Perhaps the blue and gold sequins are mating.

You can see how I'm starting to build up the tail.  Eight or nine layers of sequins are laid down in short strips like shingles, and then the ninth layer is sewn down over the whole tail. This means that by the time I get to the top of the tail I'll be working with a much thicker layer of felt.  This will then tie into the body of the bird, and the seam will be then covered by a couple of long wing segments. 

Okay, that explanation doesn't actually make a whole lot of sense, but the technique will work, I swear!  At least, I think it will.  It works in my head, anyway.  Guess we'll find out soon!

~Jess

In Which My Child Needs To Stop Having Seizures

Connor only had three more seizures today, which was a marked improvement over the previous two days.  Fourteen seizures in three days is still not a particularly stunning track record, though.  I'm going to have to give that boy a stern talking to, because really this sort of behavior is totally unacceptable.  Something along the lines of this should do it:

"Tomorrow let's shoot for zero seizures, okay little guy?  Not only do I not care for the frequency of these shenanigans, but the timing isn't exactly wonderful either.  Mommy is in the middle of roller derby drafts, and giving her five or six mini-heart attacks in a 24 hour period does not do wonders for her skating. 

You want me to get onto a team so you can watch me skate around and kick other girls' butts, right?  I thought so.  So quit activating my fight-or-flight response multiple times a day.  There's only so much adrenaline I can produce in a given time period, and I need it all for derby right now.  If you can't manage to tone it down at the very least quit having these things when I'm driving on the highway, sweetie.  That would help considerably in the Not-Giving-Mommy-A-Heart-Attack department, and I'm sure all of the other drivers on the road would appreciate it too.

Not to mention that these little incidents aren't exactly good for your health either. 

So cut it out, okay cutie?  I'm glad we had this little talk."

If my brilliant inspirational speech fails, I'm going to fall back on hoping that the medication increase is just taking a couple of days to kick in and that by the time the weekend is over we won't be seeing any more of these.  Otherwise I'll be putting in another call to the neurologist and we'll go from there.  We haven't picked out any underlying cause as of yet; he doesn't seem sick at all, just tired.  And after having fourteen seizures in three days, who can blame him for that?  Heck, I'm tired too and all I'm doing for the most part is watching them. 

Really, kiddo.  Enough is enough!

~Jess

In Which Connor Does Not Have A Particularly Wonderful Day

So Connor had six seizures today.  You will note that this is not exactly an improvement over yesterday, when he had five.  He's not running a fever and seemed otherwise to be fine, so I think we've simply gotten to the point where his medication is going to stop working again.  And when his meds stop working, they just stop working.  There's no gradual tapering going on here-- either they work sorta well or they don't work at all.

When he'd had two seizures already and it wasn't past seven in the morning yet, I went ahead and called the neurologist's office and left a message.  The nurse called back barely a couple of hours later, and Connor was up to three.  When I talked to the neurologist personally around noon we'd just hit four.  Connor's neuro went ahead and upped the little guy's Lamictal pretty substantially, but the little guy still had two more seizures today, even after the upped dose.  We'll give it a couple of days and see how things go, but the fact that the seizures continued even after the upped dose is not encouraging.

I'm kind of torn about taking Connor to school tomorrow.  On the one hand, so far as I can tell he's not sick and he's interacting well when he's not seizing.  On the other hand, eleven seizures in two days really takes it out of the kid, and while I'd love to think that he's not going to have any at all tomorrow quite frankly I'm not overly optimistic.  Also his Lamictal causes insomnia, so he didn't go to bed until almost eleven at night.  We'll just have to see how he feels in the morning and sort of go from there.

I sure hope the little guy gets better soon.

~Jess

In Which Connor Does Not Have Such A Hot Day, And I Meet The Bimbo of Thread

Connor didn't have such a hot day today, unfortunately.

After a relatively quiet week on the seizure front, he had five today-- two of them after I gave him Ativan, which is not particularly comforting.  I have absolutely no idea what brought them on; the only thing I can think of is that maybe he's getting sick.  No doubt I'll know for sure one way or the other tomorrow, depending on the kind of day he has. 

So that was not so wonderful.

The good news was that not a single one of them was the stop-breathing-and-look-really-dead kind.  They were all the I'm-obviously-in-distress-but-my-lungs-still-function-kind.  No oxygen and/or mouth-to-mouth was needed.  So that was a definite improvement in the state of matters.  If the kid's going to have five seizures in a day, I'd much rather them be of this variety.  But that doesn't make the whole five seizures thing less worrisome; it just keeps us out of the hospital. 

Oh well.

Since Connor spent about five hours napping today due to all of his shenanigans, I kept myself occupied by sewing.  Really what I should have been doing was cleaning the house-- especially since the entire contents of our luggage is still strewn around our kitchen and living room from when we got home six days ago-- but sewing keeps my mind occupied better because it's a challenge.  Also I could sit right next to the apnea monitor, which was a good thing because the kid had a seizure and the alarm didn't go off due to the whole still-breathing thing.  I recognized it because the pattern in the breathing changed, and if I'd been off in the bedroom putting away everything I wouldn't have recognized it.  That's my excuse, anyway.  Oh, and also I didn't feel like cleaning. 

So I worked on Ellen's stocking, which is coming along nicely-- or it was anyway until about halfway through the day, which is when I started work on the tail.  I've gotten to the part which involves metallic gold thread, and I have come to the conclusion that metallic gold thread was invented by someone who is secretly plotting to turn all needlepointers (is there a technical term for us?) into crazy anarchists hellbent on destruction.  Seriously this stuff makes you want to kill people and blow things up.  It is not fun, and I have only myself to blame.  The only excuse I can give is that prior to this point I was innocent in the ways of the gold thread and now that I've started using it it's too late to stop.  Well, I'll know better next time.

Metallic gold thread is the bleach blond bimbo of the sewing world.  It looks really pretty from a distance, but no one in their right minds actually wants to work with it personally. 

The thread I've picked out seems to be especially ornry.  First of all the label on the spool says "Sultry Silver Silk Metallic Thread."  This is very obviously not silver thread.  I believe the manufacturer/anarchist producer designed it this way so that when I run out I have no idea which color of thread to pick up (and yes, metallic gold thread comes in multiple shades) so I have to wander the aisle with my stocking, holding spools up to compare to the work I've already done and looking generally incompetent. 

Secondly, the shiny, fiddly bane of my existence is convinced that it needs to be curly thread, and it sprongs up into glorious tangled ringlets every time I stop pulling it taut.  I'm trying to work with three strands at a time, so you can imagine how wonderful this is.  Also it doesn't hold a knot worth a darn.  Seriously, they should put a warning label on this stuff.  It's not good for my blood pressure.

And of course the way I designed this thing, I'm using it on all of the tail feathers.  All of them.  I haven't counted how many that is because I don't want to know. 

The only good thing the metallic gold thread did today was it kept me from obsessing over how Connor was doing because I was so busy cursing at my sewing and pricking my fingers full of holes after that one recalcitrant strand insisted on wriggling its way off my needle yet again.  Also once I actually get it on the stocking it looks quite nice.

But I've learned my lesson.  The next project I do will not involve Sultry Silver or whatever color this is.  Even if it is really pretty.

~Jess

In Which I Stay Up Far Too Late And Don't Write A Real Blog Post

So I was supposed to be sitting out here writing a blog and then going to sleep early, but instead I picked up one of the books I got at the library today-- just to glance at the inside cover, mind you-- and now it is three hours and 436 pages later, and far to late at night to write a proper blog post.

So call this a placeholder, if you will, until tomorrow morning when I'm more properly awake and can actually use grammar and spell words correctly again! 

Sorry about that.

~Jess

In Which I Have Probably Gone Insane

So this is what I did with my day today.

Yes, I'm immediately plunging into another crazy sewing project.  This time it's a stocking for our future daughter.  I wasn't happy with any of the design kits I'd found online, and the only kit I already had was a blue-eyed, blond-haired Snow Queen, which I didn't really want to make for my raven-haired, black-eyed daughter. 

So I designed my own. 

I was looking through some sewing books and magazines I've collected from various places and found a lovely cross stitched peacock pattern in one of them.  I based my freehand drawing loosely off of that.  Then I picked up some tracing paper and a chalk pencil to make my own patterns, along with all of the sewing supplies I needed, and got to work!  The finished stocking (if it turns out like I picture it in my head) will be pretty elaborate.  By far the most work will be in the tail; it will involve a ton of layers, embroidery and sequins.  Lots and lots of sequins.  You can remind me that I brought this on myself when I start complaining about it in a few weeks.

In the meantime working on the stocking is still exciting and fun, and it makes me feel like I'm doing something to be closer to Ellen.  Hopefully we'll be sharing Christmas with her for the first time next year, and I think it's really important that she have a handmade stocking to match the rest of the family.  If it works out well I'll stop using the kits entirely and just design my own stockings from now on.  I think it'll probably be a lot more fun if I'm working on something I'm doing completely from scratch!

I'm well aware of the fact that I just spent a solid two months whining about how much I hated the last sewing project I was doing.  Despite that I am now embarking on an even more elaborate and time consuming project.  What can I say?  I have a selective memory, or maybe I'm just insane.  Oh well; right now I'm excited about the project.  Let's hope it stays that way.

I'll take more pictures when it's finished!

~Jess

In Which I Am Not Ready For 2011

 

Christmas 2008

Is 2011 seriously here?  Someone needs to slow the clock down, because I am so not ready. 

I mean, Connor turns five in 2011.  Five.  That's halfway through a decade, for Pete's sake.  My little guy is not ever allowed to turn five, so 2011 will just have to turn back into 2010.  That kid is getting entirely too big.  And what about me?  I'll be a scant year away from thirty years old, which is completely unacceptable.  Of course I already have grey hair, but seriously I'm not finished with my twenties yet.

Besides, I haven't fully recovered from 2010 yet.  I mean, look at all of the stuff that happened!  Jeremy got back on his feet, we moved into our amazing house, experienced gerbil cannibalism, started the adoption process, Connor had about eight billion seizures but also began standing with support, and I joined roller derby-- among many other crazy things!  Not exactly the boring year I was hoping for, but overall we had a pretty good time anyway.  So I figure we should throw at least a couple more days of 2010 in there just to give Jer and I a chance to kind of wrap everything up. 


Christmas 2009



 Oh, and did I mention that this is my 753rd blog post?  There's nothing particularly special about that number except that seriously how the heck have I written 753 blog posts?  That is a staggering amount of writing about things like poop explosions.  And since I don't exactly put a ton of effort into these things (because then blogging would be work and I wouldn't want to do it anymore) goodness knows how many times I've used the words 'really,''very,' and 'anyway' in that ridiculous number of posts.  I haven't exactly been writing the Great American Novel here, and it's still a wonder to me that people not only want to read about Connor's poop explosions, but then they want to comment and write me long e-mails giving advice on proper poop containment and sharing their own poignant or hilarious poop explosion stories with me. 

Really, you are all amazing!

But as wonderful as all of your commiserating and moral support is, it still doesn't make me any more ready for 2011.  Since Father Time doesn't seem to be taking suggestions from me at the moment however, I guess I'll just have to get used to it, even if it will take me three or four months at the earliest before I quit writing 2010 on all of my checks.  Force of habit is a powerful thing.

 So since I'm stuck with 2011, I hope the year will be a good one.  I'm not going to ask for a boring year, because our family doesn't do boring.  But I hope that it's exciting in a good way, and I wish you all the same! 
~Jess



Christmas 2010