Tuesday, July 31, 2012

In Which Connor Makes A Couple Impressions

Today Connor finally had his appointment with the audiologist to get a new earmold made for his left hearing aid.  He's been without hearing aids for over a month now, and this was the earliest that they could fit us in, which I thought was a little strange considering that normally they consider a kid not having access to sound to be somewhat of an emergency.  It turns out that the woman who booked it for some reason thought that Connor was just outgrowing his earmolds, which is not nearly as urgent a problem.  So the audiologist told me if he does it again to just ask for her directly so that we make sure he gets in quickly.  This is actually only the second time he's lost an earmold in the four years he's been wearing his hearing aids, so hopefully it won't come up any time soon!

As it turned out, Connor's one remaining earmold was getting a bit small anyway, so it was decided to just get him a new set entirely.  This involves making a mold of Connor's ear canal, which is not really his favorite thing in the world.  He's got a piece of bone in his right ear canal that's much closer to the surface than is typical, and so the pressure of the ear impression material used to be extremely painful for him.  Luckily as he's gotten older it no longer seems to bother him nearly as much; either he has a little more padding between the bone and the skin now or else the pressure of the earmold material isn't as bad since it has more space to expand in.  So while he still doesn't particularly enjoy it, at least I no longer feel like I'm torturing my kid by making him go through the experience.

While a lot of people tend to go with the clear or beige earmolds so they don't stand out as much, Connor doesn't really care if they stand out (and since his hearing aids are bright orange it would be kind of the equivalent of ordering a diet coke with a double cheeseburger).  There's a more practical reason for getting brightly colored earmolds in our house anyway; the cats have a bad habit of thinking Connor's hearing aids are great to play with if I make the mistake of taking them off him and leaving them somewhere they can get to, and so having something that is easy to spot on our laminate floors is a big plus.

Connor narrowed the wide selection of colors down to two choices and then refused to pick between them.  So I chose for him.  This time he's getting a color called "blue cat's eye," which basically looks like one of those neon blue swirly marbles.  It's pretty neat.

It will take another three weeks for his hearing aids to come in, but at least he'll have them before school starts up again.  After going two months without sound, it may take him a little while to get used to wearing them again; hopefully we won't have to resort to the Sad Hat.  It probably wouldn't fit him anymore anyway!

~Jess

Monday, July 30, 2012

In Which Not Much Happens

No call to the neurologist today-- Connor did much, much better!  He didn't have a single seizure today.  Of course he did stay up until two in the morning and then wake up at five, but thankfully our night nurse was here for him to serenade all night while I snoozed away. 

Other than that there's not much to write about today!  We went to the library, did some chores, and just enjoyed spending some time together.  Sometimes it's nice when there's not too much to say.

~Jess

Sunday, July 29, 2012

In Which Connor Hogs The Aisle

Well, you all know how Connor is.  Since he had such a fantastic day yesterday, he apparently felt the need to balance the week out.  So he had four seizures today: all of which were the get-really-cyanotic kind. 

He had the second one of the day in the middle of the grocery store's paper towel aisle.  I carry a blanket under Connor's wheelchair for just such occasions, and I spread it out and put him down on his side in the middle of the aisle to wait out the seizure.  He doesn't have any control over his facial muscles while he's having an episode, and if he stayed upright he could easily drown in his own bodily fluids because he can't swallow his saliva and so it would run into his lungs.  Not fun.  Hence the lying-on-his-side-in-the-middle-of-the-aisle thing. 

We had the aisle all to ourselves.  Out of the corner of my eye I watched a variety of people swing their carts to go down and pick up some toilet paper or light bulbs, take in the crazy mom who was apparently letting her kid take a nap in the middle of the aisle, and decide that they really should stop by the meat department first, or maybe grab something over in produce.  I'm sure if I'd been acting upset they would have come running to see if I needed help, but because I was acting like this wasn't out of the ordinary (and sadly, for us it isn't all that unusual) they probably just thought I was nuts. 

At any rate, that cut our grocery trip rather short.  Luckily I've learned to shop for the most essential things we need first so that if Connor does have some sort of crisis I'll at least be able to buy the most important stuff, even if I don't make it to the peanut butter aisle or whatever.  It's a strategy that's served us pretty well over the past few years.

Connor wasn't running a fever, it wasn't a hot day today, and he didn't seem to have any other symptoms, though he did get a glorious case of goosebumps and chills at one point.  So if he keeps this up tomorrow it will be time to call his neurologist and see about adjusting his medication.  I think the last adjustment he had was back in October, so it's been a while.  It might be that he's about due for a change.

We'll just have to see what tomorrow brings!

~Jess

Saturday, July 28, 2012

In Which We Have A Great Day

Connor didn't have any seizures today and seemed to be feeling pretty chipper, so we drove down to the Puyallup farmer's market to play around.  I spent some time visiting my friend Dagmar, who does henna down there.  She's getting married next week, and the guests are not only encouraged to wear costumes, but are providing a bounce house and cotton candy.  This is my kind of wedding.  I'm hoping that Connor will have a good day and we'll get to go!

So I have my arm all painted up with a glorious henna design, and since I also stopped by the library, the cheese shop and the bakery I am stocked up on books, cheese and chocolate brownies. 

Life is looking pretty good right about now.

~Jess

Friday, July 27, 2012

In Which Connor Has A Rough Day And We Have A Cheeky Visitor

We took it easy today; Connor had a pretty good sized seizure about five minutes into his stander time and spent most of the rest of the day dozing.  I think that other than the ones he has on the highway, seizures in his stander are my least favorite because I have to race to get his straps undone so I can lay him on his side before he has major aspiration issues.  Luckily he doesn't have them in the stander very often.

So I spent the day in the house, piddling around the kitchen and the living room while the kid snoozed away on the living room couch.  I made a big batch of papaya salad and ate almost all of it immediately because that stuff is delicious.  It's Ellen's favorite food, so once she's home I'll have to make a couple of batches at a time or between the two of us we'll go through it too quickly.  Unless she doesn't like the recipe I use, in which case, well, more for me. 

We probably won't be sharing with Jer because he mostly cooks his own food so he can track his caloric intake.  He's into powerlifting in a major way now, and in order to be able to lift more weight but still be able to pass the army physical fitness test he goes through bulking and cutting cycles.  This lets him build more muscle but not put on a lot of extra fat.  He's got it down to a science, so I've learned to let him do his own thing-- as hard as it is to turn my Feed People gene off. 

Since Connor gets most of his nutrition through his g-tube I usually end up cooking just for me, and I find that a lot harder to do, for whatever reason.  So it will be nice to have someone to make meals for! 

I was worried that with all the sleeping he did today Connor would be up until the wee hours of the morning, but he actually crashed shortly after I put him down and (knock on wood) it looks like he'll probably sleep through the night.  Since he was completely out, I took the monitor outside with me and sat on the porch for a little bit with a cup of tea.  It's light outside until past nine in the evening this time of year, so it was still a couple of hours before sunset.

I sat out there long enough for the wildlife to forget about me, and I was delighted to see my first chipmunk in the garden!  He spent quite a bit of time at my profusely blooming rose bush, and it didn't take long to figure out why.  He would stand up on his hind legs and reach as high as he could to snag buds, delicately nip them off at the stem and then sit back to nibble them down to nothing but the golden centers.  I didn't begrudge him a few as the plant was loaded with more than he could possibly eat, and it didn't hurt that he was so ridiculously cute to watch.  After he'd eaten his fill he scampered off, holding his tail straight up in the air behind him like a bushy exclamation point.

I hope I see him again as he was very fun to watch, but my house is a favorite hangout for our local barred owl (I heard him out in our big tree at dusk) so that chipmunk is living dangerously if he decides to spend very much time over in my neck of the woods!

~Jess

Thursday, July 26, 2012

In Which Connor And I Keep Our Cool

Today got hot enough that I left the house with Connor and took to the mall.  There's a huge mall up the highway from us that's a good air conditioned place to hang out.  We're still getting price quotes on having the AC installed in our house, but the sooner, the better!

After we spent some time circling the mall we ended up in Seafood City; the huge Asian supermarket near the foodcourt.  I picked up all the ingredients for som tam (green papaya salad), which I've made enough now that I don't need a recipe anymore.  And I picked up a large bunch of lemongrass too, which I'm going to try to make some sachets from.  I've discovered I really love the sweet citrus scent of lemongrass, and Connor doesn't seem to react to it.  I think using it to make my clothes smell good would be rather nice.

I bought a large package of Thai chili peppers too, but that was less because I think I'm going to be using that many in my cooking over the next week or two (one or two of those goes a long way) and more because you couldn't buy them individually.  I think I might have to get out the dehydrator and see whether or not I can dry them to store them longer.  If that doesn't work, then I can always pop them in the freezer.  With a few exceptions (like som tam) dried peppers should work fine in my recipes.

After our expedition to the mall, Connor and I dropped the groceries off and then headed to his physical therapy appointment.  We're doing some trouble shooting right now; the little guy needs a new TLSO (Torso Lumbar Sacral Orthotic-- basically a back brace) for his scoliosis, but we have to figure out a way to make one that isn't going to cause him to overheat-- a real danger in the summer time with this kid.  Hopefully we'll be able to figure something out that he can wear enough to help slow down the progression of his scoliosis.  We'd like to hold off on surgery for a few more years!

~Jess

Wednesday, July 25, 2012

In Which Connor And I Hang Out And He Hopes I'll Hang Up

Connor is back up to two hours a day in his stander again, though I'm splitting the time up because he seems to tolerate it much better that way.  Two hours is a long time to be standing without pause for any kid, let alone a kid like my little guy!

It got pretty hot outside today, so we spent the majority of the time holed up indoors with the blinds down to keep things cool.  I spent some time making calls and catching up on paperwork, and Connor spent that time screaming at the top of his lungs any time I picked up the phone.  Connor isn't a fan of conversations that don't include him as the center of attention, and he's no stranger about getting his point across when I refuse to hang up after a politely signed "No, Mommy.  All done bye bye." 

He doesn't cry or get really upset-- he just makes his displeasure known.  Just pick out a video on YouTube of a screaming macaw, put it on repeat and play it at top volume through some surround sound speakers and you'll have a good approximation of how things sounded around here today.

As you might imagine, this makes it difficult to talk with the poor lady from our insurance company. 

Luckily Connor can't follow me across the room, so I spent a good chunk of my day with him sitting his protest on the couch while I leaned against the kitchen counter, within eye shot of the little guy but far enough out of his impressive demonstration of lung capacity that I could actually get through the phone conversation.  Sometimes I even drew it out a bit-- the last thing I wanted to do was reward him for the behavior by hanging up the phone.  That's a surefire way to ingrain this glorious new tactic of his forever.

Sigh.

~Jess

Tuesday, July 24, 2012

In Which I Garden And The Cats Go On Patrol

Connor and I spent some time out in the yard today, and once I got most of my small projects done out there I just had to go down to the nursery and get some more plants so I could create twice as many projects as I had before.  Because that's how I roll.

With all the outdoor things I was doing today after Connor's bedtime I spent quite a bit of time going in and out our screen door at twilight, and I seem to have invited every bug in the general vicinity in with me.  So the cats are going absolutely nuts right now; they take their role as the Bug Destroyers of the house very seriously, and the war is on. 

Cricket has been stalking a crane fly for the last twenty minutes, and so she's been alternating between stalking the bug, leaping wildly into the air, and sitting beneath it making little chirping noises to coax it down so she can kill it.  She completely ignores bugs on the other side of our windows (unlike Loki, who is convinced he can eat them through the glass) but she will methodically hunt down absolutely every insect that dares venture into our house.

Loki is a bit more direct with his bug catching.  His strategy is to run pell-mell after the bug until it either flies too high, he loses interest, or he skids into a wall.  Loki is not a subtle creature by any stretch of the imagination, but somehow he still seems to get lucky.  Maybe the bugs are laughing too hard to get out of his way.

Seriously-- despite their different strategies, these two are so good at catching bugs that they keep the house pretty much insect free.  I have no idea how the heck the gerbil managed to survive not one, but two escape attempts with our cats on the job.  Maybe it's because the crane flies aren't intelligent enough to hide under the couch.

Crazy cats.

~Jess

Monday, July 23, 2012

In Which Connor Is Great And There Is Much Rejoicing

Connor seems to be completely recovered from whatever set of mysterious ailments he had!  I'm so glad that he's feeling better, and that we can get back to doing fun summer time sorts of things.

We're still going to see the GI doctor as a precaution, but I'm much less worried now that Connor isn't throwing up every five seconds.  Other upcoming appointments include a visit to the audiologist to finally, finally repair Connor's hearing aid, and a trip to the dentist. 

In other, more exciting news-- it looks like we'll be picking up some respite care again some time soon!  We've been without a steady respite care worker since December, so needless to say I'm more than ready to be able to get out and about on a regular basis again.  We're using the same nursing company that's providing our amazing night nurse, and she should be coming over to learn about Connor some time in the next couple of days. 

I can't wait!

~Jess

Sunday, July 22, 2012

In Which Connor Feels Better And I Shop For Winter Clothes

Connor continued to improve today-- he's in that recovery mode where he's looking and feeling much better except for the fact that he fell asleep on me about three times today.  He didn't have any seizures though, and surprisingly enough he didn't throw up either.  So maybe he doesn't have an issue with his g-tube after all; it would be pretty great if the antibiotics solved the problem!

So we emerged from the house for the first time in a while today; we went to the mall and did a bit of shopping for our Thailand travel.  It may seem a little strange to be shopping for Thailand when we're not likely to be traveling there until the end of the year, but keep in mind that December-- Thailand's coolest, driest month-- has an average low temperature of about 80 degrees.  It's still hot, hot hot!  So the fall or winter collections in the stores closer to our potential travel time will be way too warm for where we're going.

It's still a bit of a challenge to find clothes that will work though, because the Thai people are wonderfully modest and conservative dressers (something we could use a bit more around here, judging from some of the outfits I saw on the teens at the mall) and as a general rule don't wear sleeveless shirts, low-cut blouses, shorts, or skirts that fall above the knee. 

We want to be respectful and dress appropriately, so my usual summer attire of tank tops and worn capris is not going to cut it, and Jer's year-round casual wardrobe of shorts and old t-shirts really won't work.  It ended up being a successful shopping trip; I found a couple of nice shirts and light cardigans and a skirt that falls just below the knee. 

I still need to get a nice outfit for our appointment with the adoption board, as well as a couple more skirts or pairs of light pants, but it's a good start for me.  I didn't look for Jer; he usually buys his own clothes and he's been doing so much weight lifting that I'm not sure what size he is anymore!  I'll leave his wardrobe shopping up to him.

It's one more thing to cross of my list as we get closer to travel!

~Jess

Saturday, July 21, 2012

In Which We Go To The Doctor And Treat All The Things

Feeling better already!
Never fear, dear readers!  Connor is fine.  It's my computer that needed a major overhaul this time-- I got the dreaded Blue Screen of Death yesterday due to a virus so in lieu of blogging I worked on fixing the issue.  I'm pretty sure I've fixed the problem, but if you start getting e-mails from me asking you to send money to an address in Nigeria be sure to let me know, okay? 

Anyway, we came back from the little guy's appointment yesterday with a new antibiotic (Zithromax) and a referral to see the GI doctor.  Apparently he had a possible skin infection, and with all the throwing up he's been doing Connor's primary care manager was concerned that he might have a respiratory bacterial infection thanks to inhaling formula.  Evidently breathing formula is not very good for your lungs for some reason.  Who knew?

So the Zithromax should take care of those issues and whatever other crazy bacterial things he might have going on, but it probably won't have an effect on the throwing up he's been doing-- hence the GI referral.  Because Connor only seems to be throwing up when he's in a seated or standing position and not at all while he's lying down, the doctor thought it might have to do with either his g-tube or the position of Connor's intestines. 

He had intestinal malrotation when he was born that they did surgery to correct, and it's not out of the realm of possibility to think that things might have shifted around in there a little as he's grown and slowed his digestive track down.  We don't think he has an obstruction or anything-- which would be a medical emergency-- but his intestines might be moving things slowly enough that his whole system is backing up.  So we'll go into the GI doc and see what he has to say about the little guy.  Hopefully we'll find a good solution to the issue!

So yeah, basically it was yet another one of those "Connor has three separate issues and they're all hitting him at the exact same time" things.  I swear his immune system must forget to lock the door after the first one gets in or something.  It's nuts.

There's a brick pathway in there. . . somewhere.
Anyway, that was yesterday.  By this evening Connor's skin rash already looked noticeably better, his fever was gone, he'd had no seizures and he had quite a bit more energy, which is a good sign.  By tomorrow afternoon he shouldn't be contagious anymore and we'll actually be able to leave the house again, which I am extremely excited about even if I will have to take six outfits along to do it so we can stay in clean clothes while we're out.  I haven't had to do nearly as much laundry in the past couple of days because after the third or fourth time he threw up I just left him in a diaper.  Who knows-- maybe after a day or two with the other bugs gone his system will get moving again and he won't go through quite so many clothes. 

At the very least I need to get outside and do some work on the deck and the garden; because of all the rain we've had recently the plants are going crazy out there.  Beds need to be weeded, the lawn needs to be mowed, and plants need to be hacked and tied back and more or less confined back in their beds instead of sprawling out all over everything.  While I do love a glorious tangle, I need my herb garden pathway clear enough that I can get to the herbs without stepping over or on a bunch of enthusiastic volunteers rioting out of their boundaries.

  The borage in particular is reseeding like crazy in places it should not be, but I'm perfectly fine with that because I can pull up the whole plant and use it to make a very tasty tea.  I just need to get on it before my whole herb garden is one giant patch of borage.

I need to finish cleaning the deck so I can stain it-- if the weather will cooperate.  I need at least three days of sunshine to dry it out before I can restain, and I'm hoping we'll get that a bit later in the week.

I'll just be happy to get outside again to enjoy the garden.  Despite all the work I need to do there are a few beds that actually look lovely right now and in a few years will hopefully be just the mysterious, glorious kind of tangle that I so enjoy in places that aren't my herb garden!

~Jess

Part of the wet shade garden off the deck-- my current favorite!

Thursday, July 19, 2012

In Which Connor Adds More Fun Symptoms In To Mix Things Up

Connor has now broken out in a glorious rash behind his right ear that runs down to his right shoulder.  I'm not sure what's going on there, exactly; I'll add it to the list of things for the doctor to check out when we go in tomorrow, along with the occasional spiked fever, seizures (he had three today) and the throwing up all the time.  I swear this kid picks ailments completely at random just so he can combine them in new and creative ways.  At this point I'm not sure if this is hives, some sort of skin irritation or an infection, but whatever it is it's not particularly pretty.  It doesn't seem to be bothering him, though-- he's not scratching it or anything.  Who knows?

So it was another day of staying at home for us; obviously he couldn't go to physical therapy, so we hung out around the house and watched various animals eat other animals out of our DVD collection of BBC's Planet Earth.  I'm starting to go a little stir crazy, but I'm hopeful that we'll get some good answers at the doctor's appointment, or at the very least rule out some things. 

Bleagh.  Feel better soon, kid!

~Jess



Wednesday, July 18, 2012

In Which Connor Is Sick

Connor and I stayed home all day today, because the little guy was definitely not feeling so hot.  He started running a fever halfway through the day, had a couple of seizures and is still throwing up a bunch.  He ended up going to bed at around 5:30pm. 

Poor little guy. 

~Jess

Tuesday, July 17, 2012

In Which Connor Still Doesn't Feel So Hot

I called up the appointment line this morning and got Connor an appointment for Friday, since they didn't have anything available earlier in the week.  They initially tried to send us to urgent care, but once I explained that Connor had a g-tube and so was not horribly dehydrated they let me book the Friday appointment.  He went through five outfits today (and I went through three), so I'm really hoping we'll get this figured out soon because I'm doing two loads of laundry a day right now and it seriously isn't fun. 

I don't think Connor's enjoying the whole throwing-up thing much either.  Poor little guy.

We drove out to Gig Harbor today to run an errand out at the pharmacy, and then we stopped off for a brief lunch date with a friend, which was cut short when Connor threw up on his last available outfit (I'd brought three with me) and we needed to go home.  Other than a short run out to the store since we were out of cat food, we stuck close to home. 

Connor doesn't seem to be sick, per se; when he's not throwing up he seems perfectly fine.  He's not running a fever, he's not congested, he doesn't have any spots or anything, and weirdest of all-- he's not throwing up at night.  You would think that if it was a reflux problem he'd be having bigger issues with it when he's lying down, but that doesn't seem to be the case at all.  So I'm a little mystified as to what's going on there.  Hopefully the doctor will have some answers and he can get to feeling better soon!

~Jess

Monday, July 16, 2012

In Which I Cook With Coconuts And Connor Goes Through Laundry

I decided to jump right in today on my Thai cooking quest, and made a pot of tom kha gai soup.  Basically it's a coconut-based chicken soup, cooked with a liberal amount of coconut cream that made this probably the least healthy thing in the entire cookbook I could have chosen to try.  Coconut cream is not exactly low on the calories or saturated fat.

Anyway, despite a slight mishap where the soup boiled over onto the stove (did you know burning coconut cream still smells delicious?) the soup ended up being surprisingly easy to make.  Some of the ingredients weren't things I was going to find down at the local Top Foods, though.  Luckily we live in an area that has a large Asian population, so I had a plethora of Asian grocery stores nearby to choose from that carry everything I needed to make the soup.  I even picked up a few things for recipes I plan to try later-- like some tamarind paste and some smoked chilies. 

Oh, and I couldn't resist grabbing some lychee just to eat by themselves.  I have fond memories of gorging myself on lychee at my next door neighbor's house when I was growing up, so whenever I find them ripe in the store I tend to snap them up.  There's no way I can grow them here in the Pacific Northwest, but believe me when I say that if I could, I would.

The one thing I couldn't find that the recipe called for was straw mushrooms; my guess is that they probably had them canned somewhere and I just didn't see them.  So I picked up some king oyster mushrooms instead, which aren't used as much in Thai cooking but are incredibly delicious. 

So the soup was delicious, even if one bowl of it probably had my caloric and saturated fat requirements for the entire day.  Next time I'll try cooking something a little bit healthier, and maybe a little more complicated too, like some kaeng som (a sour curry).  We'll see how it goes!

Connor tried a little bit of the tom kha gai and wasn't terribly impressed, but then he hasn't been terribly impressed with food in general lately-- he keeps throwing it up.  This weak stomach thing has been going on for about a week and a half now, which is long enough for me to think he probably needs to go see his doctor.  So first thing tomorrow morning I'll be calling and making him an appointment.  Hopefully he's not becoming allergic to his enteral nutrition or anything; that wouldn't be very good.  At least he isn't having any seizures or fever accompanying the issue.

Hope we can get this figured out soon.  It's sure as heck not fun for Connor, and it's not too great for me either.  You wouldn't believe the amount of laundry I'm doing right now.

Sunday, July 15, 2012

In Which Connor Loses A Tooth And I Stock Up The Pantry

Connor lost another tooth today-- his last lower incisor he had to lose.  He's got a glorious gap-toothed grin right now, and he keeps putting his fingers in there to feel around.  It's very cute.

We're pretty much skipping the tooth fairy in this house; Connor wouldn't get in the least excited about being left any money under his pillow (if he slept on a pillow, which he doesn't) and Ellen should already have lost all of her primary teeth.  If things go well we do plan to adopt one more child four or five years down the road-- this time younger than Connor-- so maybe we'll end up starting the tradition then.  But for now we just congratulate the little guy and leave it at that. 

Ellen has an absolutely gorgeous smile; apparently the orphanage has a pretty good dental hygiene program.  She eats pretty well too; the orphanage website posts her daily lunch and dinner menus.  Today, for example, she's having pineapple soup and fried squid with basil for dinner.  They eat ice cream a lot-- probably coconut based ice cream, since most Thais are lactose intolerant and there aren't a whole lot of dairy cows wandering around there anyway. 

I've started writing down entrees that I see appear fairly frequently on the orphanage's menu, because I've decided to start trying to find Thai recipes for them.  Obviously the odds of me coming up with exactly the same recipe the cooks at her orphanage use is pretty slim, but I'm hoping that with some of them I can at least get relatively close.  I think that in a stressful situation, having familiar foods can be tremendously comforting, and so while I won't be cooking Thai food every night I do want to incorporate it into our meals a couple of times a week and have some recipes at hand that I know she's relatively familiar with. 

My kitchen pantry is slowly filling up with ingredients from a traditional Thai kitchen, like palm sugar, galangal, fish sauce, kafir limes leaves and tamarind paste.  My collection of mortar and pestles is growing.  And I've started throwing Thai spices into many of my regular recipes; it's amazing what a little fish sauce will do for a steak marinade or a pasta sauce.

That being said, some recipes are going to be easier to recreate than others.  I bought a book of Thai recipes recently and want to start working my way through, but some of the recipes look incredibly intimidating.  At the beginning I had to look up half the ingredients because I had no idea what the heck they were.  I'm slowly starting to understand what most things are, but that doesn't mean I'm going to be whipping up something like "Lotus Root Soup With Pork Short Ribs, Peanuts And Jujube Dates" (page 139) any time soon. 

I think I'll start with pineapple soup.

~Jess

Saturday, July 14, 2012

In Which I Watch Some Thai TV And Discover The Glories of Red Kool-Aid

I've been watching a lot of Thai television lately; lakorns (soap operas), music videos and commercials.  It's a good way for me to get used to hearing the language, to have some idea of who the main actors and actresses are that grace the screens there, and to give me some insights into Thai culture.  Thai television is very, very different from what we see here in America.

Take the music videos.  Thai music videos, like many of the commercials they show, have complete storylines.  Many of them are seven minutes long or longer, and include dialogue before and after the song.  Here's what I've discovered happens in at least half of these videos, many of which are based off of lakorns:

1.) Boy is in love with girl.  Girl is a bad person (shown by her dancing at nightclubs and drinking alcohol).  Girl rejects boy's advances, usually by refusing to hold his hand, but he loves her anyway.
2.) Through a misunderstanding, girl believes that boy is cheating on her and causes a big scene, which almost always ends with her slapping him in slow motion.  Boy looks hurt, stoic and manly as girl screams a lot and then runs away.
3.) Girl finds out it was all a big misunderstanding.  Girl runs back to boy just in time to see him die horribly, from tuberculosis (surprise!), a car accident, or anything that allows him to dramatically spit red Kool-Aid out of his mouth.  Girl immediately runs to him and shakes him violently while screaming, therefore ensuring that he's dead by neck injury if he hadn't already been mortally wounded.  Cue the video montage of her remembering everything nice he's ever done for her.
4.) Girl spends the rest of the video sobbing uncontrollably at all the places they visited together.  The End.

Here's a glorious example of the above (Warning: Copious Amounts of Red Kool-Aid Involved).  And here's another one

There are a few variations-- sometimes it's the guy who's the bad person, in which case he usually cheats on the girl and then discovers he really loves her right after she either commits suicide or dies in his arms after some tragic accident, sometimes while saving the girl he's cheating with.  She skips the Kool-Aid spitting though; she just looks all pale and declares her forgiveness and undying love for him and then kicks the bucket.  Then they zoom in and show a single tear rolling down his cheek.  Cue video montage.

In some ways the videos are refreshing; the women are all fully clothed, pda is limited to the occasional chaste kiss or hand holding, and there's no booty shaking in sight.  While I can't understand most of the lyrics, I seriously doubt that drug use or blatant sexual references are mentioned a whole lot either; Thailand is pretty strict on what's allowed to be shown on television. 

On the down side, pretty much every single girl in the videos has super, super pale skin, hair that's dyed brown, blond or red, and is, in the vast majority of cases, at least partially Caucasian.  My beautiful chestnut skinned, raven-haired daughter is being exposed to just as many unrealistic beauty ideals as teenagers are bombarded with over here-- not to mention the glorious "if you die then they discover they really love you" message. 

Still, it's probably better than MTV.  At least Flava Flav hasn't made the transition to Thailand.

~Jess

Friday, July 13, 2012

In Which We Go Exploring

Today we took Connor up to the Seattle Center to check out some of The Next 50 celebration.  It's a six month long series of events honoring the 50th anniversary of the World Fair in Seattle.  They have an exhibit called the Earth Portal which we thought Connor might enjoy.

It's basically an inflatable dome, and inside are all these comfortable floor chairs.  While you lean back and watch the ceiling, they project an IMAX-style video about the universe.  Since it was only thirty minutes long, had a musical score and could only fit in 25 people at a time, we figured it might be a good fit for Connor. 

It was largely deserted, and there were only four or five other people in the dome with us.  Connor got a little noisy at times, but luckily they didn't mind.  He seemed to really enjoy it!

After that we got a bit of lunch and then strolled down to the Seattle Children's Museum and made Connor touch a whole lot of things he had no interest in touching, such as the African drums in the travel section, some bolts in the construction zone, modeling clay in the art room and fake food in the play grocery store. 

He had a great time there too, though after a couple of hours he was totally exhausted.  We got home around six in the evening, and we ended up putting him to bed a bit early because he was falling asleep on the couch. 

I think we wore him out!

~Jess

Thursday, July 12, 2012

In Which Connor Feels Iffy And I Think About Ellen Some More

The little guy had two seizures today, though he didn't seem to be running any fever.  The heat may be lowering his threshold a bit, or he may be getting sick.  Or it might be time for a medication adjustment; who knows?  We'll see how he does tomorrow.  He went to physical therapy today anyway and did pretty well, so I'm hopeful that maybe these were just his usual once-every-week-or-two seizures and we won't see any more for a little while.

The translation of our letter for Ellen's latest care package came back today, so we should be putting it in the mail this week.  We're already working on another care package for her to send off in late August.  By that point we'll hopefully be less than four months from travel.  Crazy!  Now that we're really counting down I'm starting to go absolutely nuts waiting.  There isn't too much more we can do on her room, but I still need to add some shelving to her bathroom and finish a few odds and ends.  I'm trying to stretch things out so I won't be left twiddling my thumbs for the last few months, but it's hard not to just plunge right in and finish everything now!

When Ellen gets here, at some point we'll be enrolling her in Signed Exact English classes so that she can learn Connor's language along with English.  We're actually thinking we might enroll her fairly early in her language learning process, because it might be easier for her to remember English vocabulary if it has a sign hand motion to go along with it.  There's science behind this; some studies have shown that hand gestures help improve learning and retention of information. 

While Ellen has had seven years of English in school now, that doesn't necessarily mean that he English is very advanced.  Heck, I had seven years of Spanish in high school, and about all I can do is ask where the bathroom is and sing some song about all these chicks saying "pio pio pio" when they're hungry or cold.  And I'm pretty sure I only remember the song because it had hand motions.  So learning sign at the same time as English might help give her a leg up. 

Or instead of helping, it might give her strange habits like me.  Because I sign to Connor all day, every day, it's kind of become ingrained.  I unconsciously sign at anyone Connor's age or younger, anyone who says they can't hear me or asks me to repeat myself, and whenever a particularly good song comes on or I'm riled up about something.  Oh, and sometimes in a weird sort of Freudian slip I say one thing and sign what I'm actually thinking at the same time.  I also practice signing at stop lights, which sometimes freaks out people in the cars around me.  I think they mostly believe I'm doing some sort of interpretive dance. 

At any rate, we're pretty sure Ellen already knows some Thai sign language, which has its base in ASL, so maybe it won't be too big of a stretch for her to start learning some SEE shortly after she gets home.  I guess we'll just have to wait and see!

~Jess

Wednesday, July 11, 2012

In Which We Do Some Chores And Enjoy The Weather

Today Jer and I cleaned off the deck and borrowed a power sprayer from our neighbors down the street to get it ready for staining.  We're having a rash of days without rain right now, so it's the perfect time to take care of it.  We'll let the deck dry for a few days and then get to work.

In the process of cleaning I took a load of yard waste to the dump, and it looked like everybody else had the same idea about working outside, because I ended up waiting in line for over half an hour to drop everything off.  With the sun out and summer finally, finally here, everyone in our town is trying to get as many of their projects done as they can before the rainy weather moves back in. 

Otherwise the day was pretty laid back!  Connor stayed inside because it was a little warm for him to be out, and he rode his tricycle, stood in his stander for a while and did a long stretch of tummy time, during which he fell asleep and took a nap in the middle of the living room floor.  Guess we wore him out!

He's been having a bit of trouble keeping his meals down in the past few days; probably because of the heat.  So I think we'll try putting him on his pump in the daytime too instead of giving him bolus feeds and see if that helps.  That way he'll get his meals spread out over a much longer period of time and won't have as much in his stomach at once.

It's still lovely to have some sunny weather, though.  Bring on the blue skies!

~Jess

Tuesday, July 10, 2012

In Which Mom And Dad Take Off And We Garden Some More

We took my parents back to the airport today; I'm sad to see them go!  We had a great time with them, and hope we'll get the chance to see them again soon.

After we saw them off, I spent most of the rest of the day doing garden-related things.  I put the rest of the plants from my last buying spree in the ground, and then promptly went out and bought more of them to fill out another bed in the front yard.  Sometimes these projects kind of take on a life of their own.  I also purchased a taller shepherd's hook for my bird feeders in the backyard, as one of the neighbor's cats has decided my feeders are her own personal buffet table.  She nearly caught one of my chickadees today because the feeder was only a few feet off the ground.  Now she'll at least have to work much harder to get to them. 

I've seen enough bird carnage this week, thank you very much. 

Other than that, we mostly hung around the house today.  Tomorrow we're probably getting the deck ready to restain; since we're not likely to get rain the next few days it's the perfect time.  Then it will be back to the patio project and probably a lot more gardening.  Once I start gaining momentum it's kind of hard to stop!

~Jess

Monday, July 9, 2012

In Which Jer And I Have A Date And Witness Bird Carnage

This morning my parents and I drove down to one of the local nurseries and found the last of the plants for the flower bed in the front yard.  After we came back, they settled in to watch the little guy and Jer and I took off on a date!

We ran a couple of quick errands, and then stopped for lunch downtown at one of our favorite coffee shops.  After that we made a beeline for the bookstore, of course.  No date of ours would be complete without a trip for books!

When we were finished making our selections, we drove across town and hit the Point Defiance Zoo, where we spent several hours watching all the animals, many of whom were zonked out in humorous positions due to the heat.  Highlights of the trip included watching the puffins gather food and share it with their mates, chatting with the handler of the gyrfalcon as she trained the bird, and the adorable antics of the clouded leopard cubs. 

We also saw a not-actually-a-zoo-animal bonus drama; we were standing at the polar bear cage when a large seagull snatched a sparrow out of the sky, landed in the enclosure and started ripping it apart with its beak and eating it in the most graphic, horrific fashion possible.  We were caught completely off guard; I had no idea that seagulls caught and ate other birds.  Of course this was right in front of a couple of preschool age kids, who immediately started asking their mothers what "that big bird" was doing.  The moms immediately decided it was time to go look at the camels instead.

While we were watching the seagull finish his meal and wash his bloodstained beak and feathers off in the water (really-- he looked splatter painted) Jer and I were hoping the polar bear would rouse itself enough to catch and eat the seagull in a kind of poetic justice.  He was splayed out taking a nap though, and didn't even look up.  We hummed "The Circle of Life" to encourage him, but evidently he didn't know that song because he didn't take the hint.  Oh well.

After the zoo, we decided we needed a snack and some time to relax and read our new books.  So we headed down to another coffee shop in Tacoma.  Then we did a bit of shopping for Ellen's next care package.  Finally we had dinner at a local Thai place and finished up the evening by browsing some more stores and just enjoying each other's company.

Apparently Connor did very well with my parents, which is great, and he's sound asleep right now.  So it was a lovely day all around!

~Jess 



Sunday, July 8, 2012

In Which Connor Has A Better Day And We Do A Lot Of Gardening

Connor had a much better day today, but other than a walk with his daddy in the morning he stuck close to home.  It was too hot for him to be outside much anyway; I think my parents brought the warm weather with them.  It got into the 80's today, and I'm pretty sure that's the highest temperature it's been all summer.  We actually had to water the yard this morning.

We did some good work out in the garden today; we weeded the front yard and planned a bed that we'll be planting out tomorrow morning.  I always enjoy playing with my mom in the garden!  There's still so much of the back and front yards that I haven't touched yet, so we have plenty of room to find projects to do.  I've been focused on the backyard for the past few years, so it's about time that the front yard got a little TLC.  The new bed is just a six foot wide or so wedge of the bed between some shrubs on the walk up to the house, but it's in a prominent location so we've found some showy plants to put in.  I can't wait to see what it looks like in a few years!

Even though we had lovely sunny weather today, we're in the middle of an extremely rare summer storm right now!  We only hear the rumble of thunder here once or twice a year, so this is very unusual for us.  The weather station still claims it's nice and dry outside, which is kind of funny.  Guess they weren't expecting the rain.

Tomorrow after Mom and I finish our planting, Jer and I are leaving the boy with my parents and heading out for an outing!  We're not sure what we're doing yet except that it will of course involve a bookstore.  I'm looking forward to spending some quality time with Jer; it's always lovely to have a long date.  And I'm sure the grandparents are looking forward to spending some one-on-one time with Connor, too!

~Jess


Saturday, July 7, 2012

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

Friday, July 6, 2012

In Which We Head To Whidbey

Today we all piled into the van and took a day trip to Whidbey Island!

Jer and I vacationed there a few years ago and had a lovely time, but this was the first time my parents had seen the island.  We rode the very over, played around in Langley, bought a couple of neat art tiles for a future project in the backyard, and took in the sights at Deception Pass before heading over the bridge and back towards home. 

It was a little more difficult to move around the island this time since we were using the wheelchair all day (Connor is no longer a portable size) but we still had a lovely time. 

Connor was just a doll the whole day; he had a good attitude, was very patient, and for the most part just seemed to enjoy taking in the scenery.  I think he felt better today than he did yesterday, so that was good.  He didn't get his usual amount of exercise today though, so we'll have to push him a little tomorrow.  I'm thinking a nice trike ride might be on the list for tomorrow morning!


~Jess

Thursday, July 5, 2012

In Which We Enjoy The Sun And Put Connor Through Calisthenics

Connor had a tiny seizure today, but we're not sure if it was because he's getting sick or if it's because he got his noon medication a bit late.  He did a whole lot of throwing up today too.  So we'll see how he feels tomorrow.  If he is coming down with a bug I hope he's not sick for their whole visit; that would be pretty sad!

Otherwise the day went well.  It's lovely having my parents up to visit, and we spent a lot of the day catching up and just exploring Puyallup.  They brought absolutely fantastic weather with them; we took full advantage of the mild temperatures and gorgeous blue skies and stayed outside as much as possible. 

We're actually supposed to have a bit of a hot streak here this week, so we might not be spending quite as much time out of doors the rest of the week!  Anything over 75 degrees or so is a bit much for Connor to be out tooling around in.

I also will probably actually have to water my plants for the first time this summer.  It's been a pretty wet season!

Connor also had his first physical therapy session with his new PT, and it went really, really well.  I was very impressed with her; she seemed extremely competent and put all his joints through their paces to get a good baseline and figure out what we need to work on.  I think she's going to be very good for him! 

We'll be seeing her once a week during the summer, and then once Connor hits school again we'll probably drop down to once a month, since he'll already be in school for six hours a day so PT on top of that would be a little much.  I'm excited to see what new things the little guy will be learning over the next few months!

~Jess

Wednesday, July 4, 2012

In Which We Have A Lovely Fourth

Happy Fourth of July, everyone!

Connor had a much better day today.  He was still a little clingy and whiny, but we discovered that he's cutting a front tooth so that might have something to do with it.

Early this afternoon I heard a fire truck going by outside.  It seemed to be taking a ridiculously long time to pass, so I started wondering if maybe the fire was close by.  I peeked out a front window and realized that it was the annual neighborhood parade!  Jer scooped Connor up and we dashed outside to watch the fun.  Connor carefully waved to the fire truck, the police cars and motorcycles, the cars broadcasting music, and all the kids riding by on their decorated bicycles.  A policeman came over and gave him a sticker, which he gravely accepted and then went back to his important job of waving at every single person.  I'm pretty sure he believes the parades are put on especially for him.

It's too hot outside for him to participate in the summer parade, but since he's got his tricycle now maybe he can be in the Christmas parade!  He might have more fun watching though-- he'd probably be upset if he didn't have the opportunity to wave at Santa riding by on the engine.

The rest of the day was pretty fantastic too; we ate a lovely meal outside with our neighbors down the street, and then this evening I drove into town and picked my parents up from the airport.  We're so happy to have them visiting a few days!  We started the drive back right at sunset, and got to see some truly spectacular fireworks going up on both sides of the highway all the way home. 

That gives me an idea-- I think that next year I'm just going to load the kids in the car, put some patriotic music on and drive up and down I-5 rather than try and battle a crowd finding a spot to watch just one show.  I bet we'd see a lot more that way; the highway gives you a pretty good view of the surrounding landscape, and I'm pretty sure we were watching four or five different towns' worth of fireworks tonight during our half-hour trip home. 

That's not even counting all the ones we saw going up from the housing areas, and there were a ton of those. It's well past the end of all the structured shows and it still sounds like World War III out there right now.  Our house has pretty good soundproofing, too.  We've had a wet summer and there aren't exactly any burn restrictions in this area, so I think everybody went a little hog wild this year.

Oh well; we used to live right next to the army firing range, so it's nothing I haven't heard before!  And I enjoy watching them, though I have no desire to participate.  We've got enough things going on in this household without adding accidentally setting the yard (or ourselves) on fire to the list!

~Jess

Tuesday, July 3, 2012

In Which Connor Cuts Back

We took Connor in for his annual nutritionist appointment today, and confirmed that he is currently slightly more than the ideal body weight for his height.  Even though he's been on the same diet since he was two, he's not growing as quickly anymore and because he doesn't get around on his own at all he doesn't burn too many calories during the day.  So we're cutting his intake by about half a can of pediasure to slow his weight gain, and we'll check back in after a month to see how he's doing.  We don't really want him to lose any weight; we just want his height to catch up.

We're not worried about how he looks, of course-- he would look just as adorable as he does now if he was a little butterball-- but because he has a heart condition and also rather unstable joints, we want him to be as healthy as possible.  Not to mention that it will be better for my heart, back and joints.  I do a heck of a lot of lifting him up and down.

We got Connor up a little early to get him to his appointment, and as a result totally threw off his groove for the rest of the day.  He was tired and whiny, and then this afternoon he threw up all over the place, had a little seizure and then completely conked out and napped for about three hours.  Once he woke up, he seemed to be feeling much better, so he did his stander time and then hung out with his daddy for a bit.  Hopefully it was just the waking up early that really threw him off, and not that he's coming down with the same bug I've got.  I spent a good portion of the day today without much of a voice, and I'm definitely a bit worse for wear right now, though it hasn't completely wiped me out or anything.  He can sleep in tomorrow, so we'll see if that helps.

Hopefully it will be a better day for him!

~Jess

Monday, July 2, 2012

In Which I'm Getting Sick And Singing About Elephants

I seem to be coming down with a bit of something, which is always fun.  Either that or I've finally managed to develop some allergies to something in this area other than the grass, and they're acting up in a big way.  At any rate, I was supposed to be cleaning today, but instead I spent most of my time lying around the house being unproductive while Jeremy did productive yard work.  Oh well.

Jer finished removing the last of the sod today and has most of the patio area dug down to where we need it, so now I'm looking into ordering some gravel so we can start the next part of our project!  So there's still currently a giant hole in the yard, but at least it's an attractive square shape now.

I'm plodding along with my Thai; right now I'm trying to learn "The Elephant Song."  This is a children's song that is kind of the Thai version of "Twinkle Twinkle Little Star" in that absolutely everybody knows it, so I figure it's something that Ellen will probably be very familiar with.  Even if my pronunciation is terrible, if she hears the tune she should be able to figure out what I'm singing.  Here's a youtube video of the song, for those of you who are interested.  Of course the typical teenager isn't much into nursery rhymes, but I think it would probably be comforting anyway.

~Jess

Sunday, July 1, 2012

In Which I Get All Sentimental And Connor Sees Some Stars

This morning I took Connor down to the Olympia farmer's market.  It's our first trip down this year, and we had a fantastic time!  They had a face painter there this week, and since Connor did so well with the face painting at his school's end-of-the-year party I thought we'd give it a try. 

This time we went through the book, and after playing the "Yes or No" game with him over the simplest designs he picked out a small grouping of stars as what he wanted.  Then we deliberated over color choices.  He finally selected blue-- his current favorite color (something he has in common with his future sister!).  He seemed a little more nervous about getting them on his face this time though, so she put them on his arm.  Connor seemed to really like them, and when we were done he clapped and then asked for more!  I told him we were done for today, but we'd get some more done the next time we were at the market if the face painter was there.  This sparked a brief pouting session, but soon he was too busy admiring his stars to be angry. 

By the time we got home they were a little worse for wear because he spent so much time running his fingers over them, but once they dried completely they did pretty well, and lasted the rest of the day.  I think we're going to make face painting (or arm painting, as the case may be) a new tradition in our house. 

After we got back from the farmer's market, I left the boy with his daddy and headed off to a retirement party held for me and a few other girls on my roller derby team.  I got the royal treatment even though I'm only going to be nonbouting for a season, because my team is amazing like that. 

There are times when parenting a little guy like Connor, as wonderful as he is, can be very isolating and lonely-- especially since most of our relatives live on the other side of the country.  When you live a life that's a whirlwind of appointments, medical drama and plans canceled at the last minute, it can be difficult to connect with and keep friends.  Over the past two years, the ladies on my team have become more than just good friends; they've provided shoulders to cry on, patient listening ears, and even served as on occasion as stress-relieving punching bags.  In short: they've become family.  And I'm incredibly grateful for their presence in my life. 

Roller derby has given me a lot of great things-- a chance to blow off steam, have a fantastic time working out and an excuse to wear underwear as outerwear among them-- but by far the best thing it's given me is the chance to know these wonderful women on my team and in my league.  I've also loved getting the chance to know the fantastic coaches, support staff, fans and derby girls scattered across state and international borders I've had the privilege to meet along the way.  While I'll be scaling back my skating and taking a break from bouting during the next season as we help Ellen settle into her new home, I'm not hanging up my skates for good; hopefully I'll be back in 2014.  In the meantime, I'll be the loudest fan on the sidelines come bout day.

And I hope that when my sisters take the track, they'll know my heart is skating with them.

~Jess
 
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