In Which We Get Fired Up

This weekend we're headed to Tacoma to check out the US Quad Rugby Pacific Sectionals!  It's a major tournament that will determine which team from the Pacific Northwest will be headed to Nationals in March.  We'll be rooting on the Seattle Slam, our local team, and I'm super excited about taking the kids.  Eden has really enjoyed the roller derby bouts I've taken her to, and I suspect quad rugby (AKA murderball) is going to be right up her alley as well.

I think there's a general attitude in the United States that disabled sports can't possibly be as interesting or exciting to watch as typical sports teams, which explains the pathetic lack of media coverage of the Paralympics in past years.  It also explains why we've spent a bunch of time explaining that the Special Olympics and the Paralympics, while both awesome for different reasons, are definitely not the same thing.  That gets old really quickly.

So this year I am thrilled that NBC will be covering the Paralympics in a much more complete fashion, and for the first time it will be possible to actually see the events live!  It's about time someone in the media world figured out what a bunch of us already know-- that not only are Paralympic athletes every bit as elite and legitimate as their Olympic brothers and sisters, but also that the sports they play are, pardon my French, completely badass.

I mean, seriously.  Look at this and tell me you don't want to see it live:



Of course, quad rugby isn't played at the Winter Paralympics-- we'll have to wait until the Rio games for that.  Instead, there's ice sledge hockey.  This is every bit as fun to watch as ice hockey, I assure you.  Also, we won the gold back in 2010, though I couldn't watch the dang game until after it was over.

So hooray for more coverage this year!  I can't wait for the games to begin!

~Jess

In Which Cricket Attempts To Shrink And Connor's Chair Gets A Tune Up

Seriously, cat.  This is not going to work.

Today Connor went to school sans wheelchair-- I had to take it in for repairs.  Recently it developed this annoying habit where the brakes spontaneously deploy every ten to fifteen feet with this huge clang.  This, as you might imagine, has been driving me absolutely up the wall, not to mention that it's been seriously impeding getting places in any kind of a hurry.

It's complicated by the fact that while the brakes slowed the chair down, the wheel treads have worn down enough that they didn't actually stop the chair if it's on any kind of an incline at all.  Since large portions of the streets in the Pacific Northwest run down steep hills that end in things like major traffic intersections or you know, the ocean, this had the potential to be really exciting.  So I made an appointment and took it in.

So I spent an hour and a half or so tootling around in Gig Harbor while the repairs were done, and I'm now happy to say that Connor has a chair that goes when it's supposed to go and stops when it's supposed to stop-- sans the giant clanging noise.  Hooray!  It's amazing what a difference a simple tune-up of equipment can make; I didn't realize just how annoying the problem was until I wasn't dealing with it anymore.  Connor seems to enjoy the smoother, quieter ride too.

Eden leaves for her first ever church retreat tomorrow, which is pretty exciting.  It will be the first time she's slept away from home without me there, so she's a bit nervous about it.  I think she'll have a pretty great time once she gets out there though; she'll know quite a few people and it's only for one night.  I think it's a good way to ease into getting used to some independence, and I think it might make her more open to the idea of a summer camp some time in the future.  I have some really fond memories of the camps I attended as a kid, and I'd love for her to have some similar experiences.

It's been getting colder here, and the cats have started spending as much time as they can on laps or burrowed under warm laundry as I'm folding it.  I have seasonal lap cats-- they condescend to sit on me only in the winter time, probably because they think I make a good heating pad.  Then they get really huffy every time I want to move because my legs have fallen asleep or something.

We had a pint sized wool-lined bed we'd bought for Eden's guinea pigs a while back that they didn't care for, so I washed it in anticipation of putting it away.  It was sitting out on the couch for all of five minutes before it became Cricket's new favorite happy place-- despite the fact that it's about three times too small for her to fit inside.  I ended up buying her a more appropriately sized snuggly cat bed so she wouldn't look so pathetic and could fit her entire body inside the thing, but I had to stick the guinea pig bed inside it because otherwise she completely ignored it.  Every once in a while I take it out and wash it and she waits by the dryer until it's done and she can attempt to stuff her entire body into the thing again.  I think she's convinced that if she tries hard enough, someday she'll fit.

Crazy cat.

~Jess

In Which Connor Bowls And Eden Has A Fitting

Connor's physical therapist caught us while we were on the way out the door from Eden's PT session today; she had an opening and thought we might want to go ahead and do his session early.  Normally he has physical therapy tomorrow.  I jumped all over it-- it's always nice not to have to make another trip up to the hospital!  Connor was a bit perturbed by the schedule change, but he perked up a bit when he got the chance to go bowling with a new friend.  Really-- they have a switch-activated bowling set.  It's awesome.  Connor refused to push any of the buttons with his hands, but he did hit the switch very deliberately with his head.  Hey, we'll take what we can get!

We might have to try bowling down at the local place with the kids sometime.  Connor seemed to get a kick out of it, Eden would probably enjoy it too and I'm pretty sure that they have a modified bowling set down there. 

Eden's physical therapy session was a bit unusual today as well; she spent a good portion of it choosing a model and getting fitted for a wheelchair.  Long distances are very difficult for her to walk, and having the chair is going to open up a lot of opportunities for her to participate in more activities.  She used a chair occasionally in Thailand, but it was far too large for her.  This will be the first one fitted specifically for her.

It will be a fairly lightweight, bare-bones model.  I'm not exactly sure what particular one was settled on in the end, but I believe it's in the TiLite series.  We don't want this to be a lounging chair or something that becomes her primary mode of transportation-- we only want her to use it when walking just isn't going to work.  So we got it without arm rests or push bars.  Right now she's making huge gains in terms of balance and leg function, and we want to make sure she continues to push herself while still having that support when she needs it.  She'll probably always need the chair for longer distances, but as far as we're concerned the more upright mobility she has, the better.

Eden was less concerned about the chair's functionality and more concerned with whether or not she could get it entirely in black.  Because she's a teenager, and that sort of stuff is important. Also, believe it or not, they may actually have an option that involves skulls, and the only thing this kid likes better than black is skulls.  So she's pretty gung ho about the chair.  If we don't end up with a skull option I may have to find her a skull pin to put on the back or something. 

It will probably be a few weeks before we're actually ordering the chair though as we've got to wait for the authorization to go through, so we've got some time before we're going to be picking out that sort of nitty-gritty detail!

~Jess  

In Which Connor Tries Out Some New Wheels

Connor got his new chair for his wheelchair base yesterday, which is pretty exciting!  The chair back and sides are much firmer and less flexible than his former chair, so it gives his back a lot more support.  He sits up much taller in it and it doesn't allow him to slouch over onto the side where his scoliosis curves to.  I don't think he's a huge fan of it as of yet as it's probably not quite as comfortable, but it will be much better for him in the long run.

He's been working with a gait trainer at physical therapy after school; this is the first time he's tried it with his new ankle-foot orthotics.  He hasn't figured out how to pick up his feet yet, but he's putting good weight through his legs and he can roll backwards a bit.  I'm not surprised it's difficult for him to figure out what he needs to do to move around-- this isn't something we're able to practice easily at home, so it's not a concept he's seen a lot of.  Either way it's excellent practice in torso control whether or not he figures out how to walk in it, and he's very interested in being upright and engaged in the exercise.  I'm excited to see how he progresses in the next few weeks!

~Jess

In Which We Have A Better Day

Today, I'm happy to say, was a better day.  Other than the seizure Connor had at physical therapy nothing too untoward happened.

The little guy probably just overheated; he was trying out a walker and so was exercising quite a bit, and we spent some time in a hot and stuffy elevator.  So that's probably what brought it on.  We had to use the oxygen, but it wasn't too long of a seizure-- maybe a minute and a half or so.  He napped for a good portion of the afternoon.

As for the walker: he wasn't really able to take steps in it because he couldn't lift his toes up off the ground, but he was certainly interested in the proceedings.  We'll try it again after he gets his new ankle-foot orthotics and see if that helps!

We got the news that Connor's new wheelchair back has been approved, so that's pretty great.  His old back is way too flexible for his scoliosis, and the new one should give him a lot more support.  It shouldn't take very long to process, so we'll probably be making the trek up to Gig Harbor some time in the next week or two to switch out backs.

I got some news too; I went to the doctor a couple of days ago because I've been feeling increasingly fatigued and experiencing some muscle aches and what not, and my lab results came back in.  It turns out I had a vitamin D deficiency going, which makes perfect sense when you consider that my kid is practically a vampire.  We spent all summer avoiding the sun as much as possible because it was too hot, and so I didn't get my usual warm weather dose.  I'm glad that we caught it now, because I'm sure that going into the winter in the Pacific Northwest sure wouldn't help matters!  So I get to start taking a vitamin D supplement, and hopefully that will solve the problem. 

I love it when problems have easy solutions!

~Jess

In Which We Do Not Have The Best Day Ever

Connor had a seizure this morning that needed oxygen, and he slept through the car ride to school.  He perked up once we got there though, and apparently his school day went all right.  He's out for the count right now, so we'll see how he's feeling in the morning. 

It was a glorious day today so after Connor and I took a nice walk around the neighborhood, which both of us enjoyed.  It was a much needed pick-me-up after some of the other things that happened today.  I called the ticket office to try to buy us tickets to a children's program that will be put on by the Seattle Symphony in a few weeks only to be told that even though the performances weren't sold out and the wheelchair seating (or rather seat, as apparently they only have one in the hall where the concert is to take place) was free, all of the seats around it were sold.  So we won't be attending the program, which is a shame as I think Connor would really have enjoyed it.

So a word of advice to places of entertainment: if you are only going to have one wheelchair accessible seat in your venue, please make sure you don't sell the seat next to the wheelchair space until you've sold the rest of your tickets.  It's kind of a jerk move.  Or conversely, if you are reserving seats in a theater and there are plenty that are open, please don't take the seat next to the wheelchair accessible space unless you will be with someone in a wheelchair.  While there are no doubt some people who enjoy attending concerts by themselves, I'd be willing to bet that most  attend this sort of thing with at least one other person, like a spouse, parent, blind date, etc.  It would be nice if the people in wheelchairs could sit with that date during the concert-- especially if the rest of the theater is half empty. 

The weirdest thing is, I went and looked at the seating chart diagrams of the venue online and it clearly outlined multiple wheelchair seating areas and designated wheelchair companion areas.  So I don't know if that's changed, they're only using part of the venue, most of those are reserved for season ticket holders, or the guy just didn't know what he was talking about.  But yeah, no concert for us, and it didn't particularly make me want to go see anything else there in the future either.

Oh well.

Anyway, so after that whole debacle our nursing supervisor came for her monthly check-in with us and let us know that our insurance company has apparently decided that Connor isn't medically involved enough to need night nursing.  They are currently choosing to deny our referral renewal, which means that unless we're able to convince them otherwise all of our nursing care will stop at the end of next week.  Fabulous.  Hopefully this is just a fluke and we'll be able to make them see reason, because we need to lose night nursing about as much as I need a hole in the head.  Our nursing supervisor is going to go to bat for us, and I'll be giving our doctor's office a call tomorrow too to let them know the situation.  Whee.

So yeah, we took a walk, and then we went to the bookstore and the coffee shop, and then I came home put Connor to bed and stuffed my face full of chocolate cake.  So the day was somewhat redeemed.  Hopefully tomorrow will go a little more smoothly!

~Jess

EDIT: In a genuinely classy move, a representative of the Seattle Symphony e-mailed me today to offer personal help booking our tickets-- which will now be complimentary.  That's pretty awesome.  Looks like Connor will be hearing some great music after all!

In Which We Have One Heck Of A Crazy Day

Well, that was a day.

This morning I loaded Connor up bright and early and we headed down to the hospital for his first appointment.  Because he's back in school, I'm trying to stack his appointments on the same day so he doesn't have to miss more days than necessary.  His earliest appointment today was with the GI doc, and it went very well.  All of his appointments went very well, actually.  It was in between the appointments that we had issues.

So the GI doctor said that Connor's g-tube site looks fantastic and that we don't need to move up a size.  We don't have to see him again for another twelve months, which I'm always pretty excited to hear! 

We got out of the GI clinic around 11:00am, and Connor's next appointment (with cardiology) was scheduled for 1:00pm. I had a couple things I needed to pick up for the house, so I figured I'd swing by the PX (the supermarket on post), buy the necessary items and eat lunch there before returning to the hospital.  As I was loading Connor in the car I noticed he had a small bright red patch on his left arm, but I didn't think too much of it. 

We got to the PX and I was standing in the diaper aisle when I looked down and noticed that the red mark seemed to have spread down a good portion of his arm.  I lifted up his shirt and his upper arm and shoulder were sporting huge, palm sized blotches.  Hives.  I immediately wheeled over to the medication aisle to see if we could pick up some children's Benadryl, but they were out.  So we left the PX and headed back towards the hospital to see if they could give us some, as the hives were spreading at a rather alarming rate.

 As you all know, Connor is very allergic to lavender.  He doesn't have a reaction to it if he smells it, but if it gets on his skin he usually breaks out in some form of hives.  Evidently somebody in the doctor's office at some point (I'm thinking probably a patient, as the medical personnel normally don't use scented products for exactly this reason) used a lavender product and it somehow made its way into contact with Connor's skin.  Maybe they sat in the chair we were in and put on lotion with lavender in it, or used lavender soap, or something of that nature.  At any rate, Connor usually just breaks out in a red rash in the immediate area of the contact, but it doesn't spread out much more than that.  Of course, the more times he comes into contact with lavender, the stronger the reaction grows, so apparently the confined-to-one-area thing has changed.  Either that or he's developing some new mysterious allergy.  Whee.

Normally I actually carry Benadryl with me because of his allergy, but took it out of Connor's wheelchair when he went to school yesterday since leaving easily accessible bottles of medication around in a room full of children is a bad idea.  While I'd replaced his epi pen and Diastat, the Benadryl hadn't made it back into the chair because (ha ha) we've only had to use it a handful of times over the years.

It took me about ten minutes to get Connor back into the hospital, and by the time I wheeled back into the GI clinic the hives had completely covered both arms, had spread themselves across his chest and back, and were starting to pop up on his face.  I wheeled him up to the nurse, said "I think he came into contact with lavender somewhere in here," and he took one look at Connor, and then turned around and half-ran through the staff door.  The GI doctor came out almost immediately, said "Whoa," and immediately agreed that some Benadryl was an order.

 Another nurse came out with a full bottle and a medication syringe a couple minutes later, and we dosed him up in the waiting room.  Then we hung out in the waiting room for about twenty minutes until it became clear he wasn't going to need the epi pen too.  The Benadryl ended up working really well and it only took about three hours for his hives to disappear completely.  I'm very glad that the Benadryl was so effective so quickly, and that we didn't end up needing to use the epi pen.  That was my first adrenaline rush for the day.

Then I scarfed down a sandwich from the coffee shop downstairs and hauled my grumpy, spotty, half-sedated kid over to cardiology, where they took a look at his heart, declared it to be functioning well, and told us they'd see us next year.  We headed out to the parking lot, where unfortunately due to the hot weather Connor ended up overheating while I was strapping his wheelchair into the car and I had to strip off all his clothing, aim all the air conditioner at him while it was going full blast and sponge him down with my bottled water until he no longer looked like a boiled lobster and quit acting like he was going to have a seizure at any minute.

By that point we were both more than ready to go home, but we weren't finished yet.  We went to physical therapy, which went well despite the fact that Connor was understandably rather tired and didn't really want to do anything.  We also had a consult with the local orthopedic expert and determined that Connor really needs a new wheelchair, as the one he currently isn't giving him enough support and is probably making his scoliosis worse.  And then we dropped by the prosthetic place where Connor is getting his knee extension braces from and discovered that they'd accidentally only ordered one instead of two. 

And then we went home and collapsed.  Connor fell asleep practically as we were walking in the door; he went to bed at 5:30.  I ordered a pizza as there was absolutely no way I was cooking tonight, and now I'm ready for bed too, as I'm kind of dead on my feet.  And also I'm exhausted all over again just typing this-- it was that kind of day.

Whew!

~Jess

In Which I Start Another Crazy Garden Project

The white noise machine worked like a charm!  I was out within twenty minutes.  Clearly what works on more than 90% of crying babies also works on me. 

Today was yet another gorgeous day in the run of gorgeous days we've been having; looks like spring finally decided to go ahead and show up.  It's about time!  I took advantage of the weather and spent the time Connor was in school prepping for and getting started on my latest project out in the garden: our paver patio.  This will be a 15'x15' area that will attach to the main ramp and stairway coming off the deck into our backyard.  I'm going to take a chance and try out a brand new product that I think might work really, really well for both Jeremy and Ellen's legs and Connor's wheelchair: recycled rubber pavers. 

I'm really, really excited about these-- I'd looked into the possibility of using rubber surfacing before, but this is the first product I've seen that lends itself to a DIY project.  They mimic the look of terracotta tile, but they should give us the same sort of forgiving, wheelchair-friendly surface they use in inclusive playgrounds like our beloved Bradley Lake Park. 

They're a little bit pricey, but there are a couple of mitigating factors that bring them down to my budget.  I don't have to buy as much gravel or sand as I would with typical pavers, we're using the fill dirt elsewhere in the garden for another project, and I'm doing all the work myself.  So in the end they should work out to about the same price as regular cement pavers would be to install if we had to pay someone to haul the dirt away (which we would, if we were excavating seven inches down instead of four since there's a limit to the number of hills I can make in my yard without screwing up the grade and ruining my foundation) and had to buy a lot more sand and gravel.  Also having a surface that the whole family can enjoy without trouble will go a long, long way towards justifying the cost.

It will probably take me most of the summer to excavate the area since I'm doing it by hand, so this will be another one of those slow projects like our deck.  Hopefully in a year or two, though, we'll have a great looking patio!

~Jess

In Which We Spend Some Time Outdoors And I Am A Lousy Driver

It was sunny and gorgeous outside today, so I took Connor's stander out onto the deck and did some work in the garden while he did his stander time and played with his iPad.  After his hour was up I moved him to his floor chair, which works really well outside.  It was great to have the chance to share the sunny day with the little guy; hopefully he got some good vitamin D!

We got a phone call from our pharmacy today; Connor's tricycle has arrived!  We're going to go in for his fitting and to pick it up tomorrow.  I'm hoping we'll have some more of these lovely summer days so that we can take it for a spin outside!  If not, we'll just toodle around in the living room.  Laminate floors let you do that sort of thing, and it's not likely Connor will bang the walls up too much.

No, banging the walls up is my job around here; Connor's wheelchair is big and a couple of our doors-- especially the front door and the door to Connor's room-- are beginning to show wear and tear at the bottom from the times I've miscalculated and whacked them with the footrest on the chair.  Jer and I are talking about the possibility of installing a kick plate on those doors to protect them from the bumps and dings.  They're fairly inexpensive, attractive, easy to install and should help cut down on the damage.  Now if only I could do the same for the walls!  Someday a few years down the road we may end up installing wainscoting in the hallway for the same purpose, as that's the area that seems to get bumped up the most. 

Or I could just learn how to steer the dang wheelchair.  That would probably work too.

~Jess

In Which Connor Works Hard

The director of our adoption agency's Thailand program should be home from her trip and back in the office tomorrow, so hopefully we'll get a call with an update about Ellen!  I'm going to be absolutely glued to my phone.  I always get a bit nervous about these trips, so hopefully we'll have some good news!

Connor worked extremely hard today; his occupational therapist at school said it was just about the best day she's ever had with him.  Then to top it off, he stood up in his stander through the entire Muppet Treasure Island movie!  That's about an hour and a half of standing, which is impressive.  I'm going to have to start figuring out a new motivation for him to keep standing pretty soon if he keeps going at this rate or else he'll be watching way too much TV. 

I'm so proud of him!

The combination of standing, all the hard work at school and a few short seizures completely wore the little guy out, and he fell asleep on our bed at seven in the evening.  That hasn't happened in a really long time, so you know he was really, really tired.  I'll take it a little easy on him tomorrow as he's likely to be a bit sore, but then we'll go right back to building up that time again.  I'd like to work him up to two or three one-hour sessions a day.

It's important that Connor get as much time in the stander as possible because it will do several great things for him.  Not only does it help stretch out his tight hip flexors and hamstrings, but it also helps his bones become more dense.  Children who spend a lot of time in wheelchairs and don't bear weight on their legs often are at risk of having their bones break easily because they aren't as strong as a walking person's bones would be. 

It will also greatly lower his chances of having pressure ulcers, which are caused when someone stays in one position for too long a period of time.  Luckily we haven't had any issues at all with bed sores so far-- probably because we never leave the kid in one position for long-- but the best way to treat pressure ulcers is to prevent them from happening in the first place so anything we can do helps!

I'm thinking that maybe once we have sunny skies again I'll start taking Connor and his stander to the park.  It's got some nice wheels, so the two of us could have a lovely walk.  We might get some weird looks, but we're kind of used to that at this point.  Connor loves walks, so I think that might be a pretty good motivator!

~Jess

In Which Connor Tries Out Skating Again, And I Attend A Party

Today Connor, Jeremy and I met some friends at our local roller rink for a couple hours of wheelchair skating! 

I was a little nervous about how Connor was going to react, because this was the first time I'd skated with him since I managed to run him down a ditch and into a blackberry bush.  But I shouldn't have worried, because Connor had a blast!  Possibly he realized that there were an astonishing lack of ditches and/or blackberry bushes in the rink, and that did the trick.  Or maybe it was because Daddy was there, and having Daddy involved in any experience automatically makes it about 800 times better in Connor's eyes.  At any rate, he spent the whole two hours with a huge grin on his face, waving to every single person he passed by. 

Jeremy tried out some roller blades to see how they would work on his feet.  He used to roller blade a lot and so he's very good on them even though his ankles and feet don't exactly function the way they did previously.  He said they felt "weird," but he skated almost the entire two hours.  He spent a lot of that time pushing Connor around the rink while I happily yelled at him for going too fast and reflected on just how lucky I was to have the both of them. 

So a good time was had by all.

After we got home I put Connor down for a nap and did some chores before getting dressed up to go to a housewarming party.  The theme was cocktail dresses and bowling shirts.  Since I didn't have a bowling shirt and-- due to a plethora of army functions over the past few years-- have multiple cocktail dresses, it was obvious what I was going to wear.  So I tried on a few before settling on one that I could still squeeze my hips into and then stopped by the store for a present.  Jeremy, who didn't have a cocktail dress or a bowling shirt and isn't much of a partygoer anyway, stayed home and watched the boy because he is awesome like that.

So I enjoyed myself for a couple of hours at the party and then swung by the house, grabbed my skates and was out the door again to meet a friend at the Adult Skate session going on at one of the rinks.  The session had already started by the time I made it home to get my gear, so I didn't change out of my dress because I was already running late.  Skating in a cocktail dress actually worked out pretty well-- I just pulled my socks and knee pads up over my nylons, pulled my hair back really quickly and stuck my helmet on over that, and I was off!  I didn't really even get too many weird looks-- it's a pretty diverse crowd at the skating rink, and I'm probably not the first person who's shown up there in a cocktail dress. 

At any rate, I stayed out entirely too late but had a blast!

~Jess

In Which Connor Has An Adventure And I Put Batteries In My Camera

Look-- I put new batteries in my camera!  Aren't you all proud of me? 

Thanks for putting up with my blog in its pictureless state for so long.  I know ya'll don't really come to read my rambling posts; you come for the adorableness that is the little guy!  So here he is in all his glory, complete with fuzzy Cookie Monster slippers.

It was pajama day at school today.

So there he is in his shiny new wheelchair with his rocket pajamas on.  He was a little bit confused about pajama day when I told him about it, but once he found out that he got to wear his Cookie slippers to school suddenly he didn't have any objections.  He loves those things!  Mostly I he likes the way they feel-- he spends a whole lot of time very carefully petting his feet when they're on. 

He's sporting another festive accessory-- a big ol' lump on his noggin!  He managed to launch himself out of a chair today at school and broke the fall with his face.  Poor little guy!  So he's got a large goose egg on his forehead and some friction burns down the side of his nose.  Maybe instead of being a yeti he should have picked a prizefighter costume!  I suppose these sorts of bruises and scrapes are part of most kid's growing up, but it freaked me out a little bit because Connor doesn't get hurt very often!  It obviously looks far more dramatic than it actually is though, because he felt absolutely fine today and it didn't seem to bother him at all.  Oh well-- the swelling was already going down by the time he went to bed tonight.  I should mention this chair was a whole foot from the floor, and I'm not totally not upset with his teacher or any of his aides-- they are awesome!  Could have happened to anybody. 

I'm not feeling so hot right now either, to tell you the truth.  My nose is pretty stopped up and I'm doing a lot of coughing; since I don't have allergies I'm pretty positive I'm sick.  So far Jer and Connor seem to be feeling okay, and I hope they stay that way!  I'm hoping that this'll be a 24 hour bug and I'll be feeling better tomorrow; we'll just have to see!

No word on whether or not I've made the derby team yet; I'm really hoping I hear something tomorrow because I am going nuts!  I'd just like to know one way or the other, you know? 

I hate waiting.

~Jess

In Which Connor Is A Saddy Sadkin

Connor got his new wheelchair today!

Sadly, you will not be getting any pictures of it today, however.  This is because in addition to acquiring said wheelchair we also went up substantially on Connor's Lamictal today--the greatest jump so far-- and as a result he was not exactly in a picture-taking frame of mind.  The drug information on Lamictal mentions "irritability" and "mood changes" as potential side effects.  They failed, however, to warn me that Connor would turn into The Saddest Boy The World Has Ever Known.

Okay, I am totally not kidding about this either.  He was actually sent home from school today because all he wanted to do was sit in his aide's lap and cry.  Oh-- and throw up.  Nausea is another one of those glorious side effects.  Apparently Lamictal dose increases do not put Connor in a learning frame of mind.

So he came home from school at ten or so in the morning and I promptly put him down for a nap (drowsiness-- another side effect); he slept until a little before one in the afternoon, when he announced his lucid state by wailing into the monitor.  He calmed down a little bit while I was holding him, but lost it again when I told him it was time for him to go to speech therapy.  I called our speech therapist on the way there because we were fifteen minutes into our car ride and Connor was still sobbing like instead of going to speech therapy I had actually said we were going to have our eyeballs skewered with red hot pokers.  Julie, after listening to me talk over the little guy screaming in the backseat, wisely suggested we reschedule speech therapy for later in the week.

So we turned around and drove back to the house, where Connor took his second nap of the day.  I woke him up so we could go get his new wheelchair, and he spent most of the car ride there doing that little half-cry, half-whine thing that never fails to set my teeth on edge.  You know, where he'd cry for a second, and then glance up to see what my reaction was, and if I was looking at him immediately start crying much louder, but if I wasn't than he'd forget to cry for a few minutes until he realized he was supposed to be upset and start up again. 

When we got to the pharmacy, Connor informed the very nice man who was doing his fitting that he "hated him."  Then he announced that he didn't like his spiffy new wheelchair and wanted it to go away.  He signed "don't like" to every person we passed in the store for good measure.  Once our fitting was finished, the little guy actually forgot he was upset because he liked the additional height the new chair provides him in the car-- he was too busy looking out the front windshield to remember he was supposed to be crying.  But the second we got home he turned the waterworks back on, this time for Jeremy's benefit.  I put him down and he took his third nap of the day.  He perked up (of course) when he woke up and realized that his respite care worker was here to see him, and when I walked out the door for the adoption seminar we had tonight he was happily snuggled up to her as if absolutely nothing had been wrong for the entire day. 

The little stinker.

At any rate, I'm hoping that his body will adjust to this new dose quickly; I'd like my happy-go-lucky kid back instead of my current one who is doing a stunning imitation of Eeyore and Oscar the Grouch's love child.  Connor's able to hit notes when he's upset that make my teeth vibrate, and there are only so many hours of that I can erase by consuming massive amounts of chocolate.  I am also desperately hoping that today was indeed a result of the Lamictal increase and not because Connor is, say, getting sick again. 

Poor little guy.


~Jess

In Which Connor And I Go For A Walk

Today I spent a while trying to get the house back into shape.  During Connor's hospital stay everything went steadily downhill, so I figured it was way past time I tackled that mountain of laundry and tried to get the house back into working order.  I always feel better with a clean house anyway-- it makes me feel much less guilty when I sit down to have some relax time if I'm not sitting there staring at a big mess!

Connor seemed to be feeling better today, so I took him out for a short walk around the neighborhood.  He seemed to thoroughly enjoy himself; it was an absolutely beautiful day and quite warm for mid-October.  It tired him out, though, so after we got back I put him down for a much-needed nap. 

The little guy is finally showing some interest in his surroundings again; he's also started signing as well and beginning to demand attention, which tells me he's really on the mend!  He's still got a terrible wracking cough though, which makes him throw up a lot-- especially at night.  Poor little guy; it can't feel fantastic on his throat.  He spent most of today in an upright position, though, which is pretty great!  I feel like he's bouncing back fairly quickly.

We also got the call today that Connor's wheelchair is in!  We made an appointment to get fitted for it and pick it up next week, which is pretty exciting.  I'm so happy that he'll soon have a new chair, because his old chair is rapidly being outgrown. 

I can't wait to try it out some other glorious autumn day!

~Jess

In Which A Whole Bunch Of Things Happen

I found a cute picture of us at an army function a few months ago that I hadn't posted yet.  So I thought I'd put it up since I haven't bothered to get new batteries for the camera yet.  Sorry about that.

At about 7:00 this morning I got a knock on the door.  It was the delivery man with our last shipment of wood so that we can finish up the deck!  Jeremy is going to spend a good portion of tomorrow staining it so it'll be ready for assembly.  We're really happy that the project is almost finished; it should look beautiful when it's done. 

I also got a phone call from Olympic Pharmacy; Connor's new wheelchair should be ready in the next couple of days!  I'm so excited that he's getting his new chair, because he is seriously outgrowing his old one.  You can barely snap the lap belt closed anymore because he's so big.  His new chair is a Thevo Twist, (with red upholstery) and it is a seriously stylin' set of wheels!  It looks like it will be pretty comfortable for him, and with a carrying capacity of 88 pounds he's not likely to outgrow it any time soon.  Someday we hope he'll be able to use a wheelchair that he can move himself, but in the meantime this one will hopefully be pretty great!

As for Jeremy, well, he went on a battalion run this morning.  That's right.  A run.  How's that for awesome?  It's not something he'll probably do very often as it'll lower the life-expectancy of his ankle joints (currently predicted to be between 20 and 25 years) but the fact that he can do it at all is beyond amazing.  Not that I'm surprised.  Oh, and did I mention that he has an eight-pack now?  He's been working out twice a day for at least the past six months.  The man is looking more like Vin Diesel by the week. 

I don't really have a problem with that.

Oh, and last but not least, I believe Jer and I finally came to a decision tonight about which child we're going to be adopting.  I'm not sharing any details on here until we're officially matched by our agency, but I thought I'd let you all know that the news is coming.

And that was quite enough to cram into one day!

~Jess

In Which We Go To The Beach, And Connor Teaches Me A Lesson

So in all the excitement about Gas Station Jesus yesterday, I forgot to tell you that Connor had a seizure that morning.  Only a thirty-second one and I didn't have to do mouth-to-mouth this time or anything, but still this is probably evidence that I have become way, waaaaay too jaded to this sort of thing, because telling you about cheap religious statuary took higher priority than telling you about my kid turning blue and not breathing.  This possibly makes me the worst mom ever.  Oh well.

So yeah, Connor had another seizure.  Lovely.  And we're waiting, once again, to hear back from the neurologist, though my guess is we probably won't change anything since we just upped his medication last week, and blah blah blah.  I don't have to tell any of you this, because you all know the drill by now as that was seizure number thirty-nine.  Connor needs to quit having these things, because I'm seriously tired of blogging about them.  Also I'm relatively sure stopping breathing thirty-nine times isn't very good for your health, though doing it in public is a great way to meet random people and see whether or not you want to be friends with them.  (Hint: the ones screaming "OH MY GOD A DEAD BABY!!!"  and shouldering others out of the way to get a better angle while taking pictures with their cellphones are probably the people you want to avoid inviting out to lunch, unless you happen to carry arsenic in your purse and want to try it out on somebody.  Believe me; I've been tempted.)

Um, anyway, so today we didn't have any seizures, though we did get some interesting looks from various bystanders.  But I'm getting ahead of myself. 

In keeping with the spirit of our ocean theme this week in my ongoing plan to force Connor to touch as many horrible things as possible, we went to the beach.  Specifically, we went to Alki beach, which is one of the few beaches in the area that has a wheelchair accessible walkway bordering it.  Unfortunately, said walkway is up about thirty feet from the shore-- at least at low tide, anyway-- and there's no paved sidewalk to get down to the beach, which was where all the horrible things I wanted to torture Connor with were.  I can't just pick the kid up and haul him down there, because he's got so much medical equipment at this point that there's no way I can slog through a bunch of sand dunes with all of that stuff loaded on my back and a thirty-something pound kid who won't hold on to me leaning all his weight backwards off my hip. 

But we had to press on, in the name of Science!  Or something.  So what did we do?

Connor's wheelchair looks a heck of a lot like a high-end stroller-- enough like one that whenever we go to the airport they try to make me put it up on the conveyor belt and I have to argue with them for a few minutes before they'll believe that it doesn't come apart in enough pieces to fit up there.  The wheels on this thing are not exactly built for sand dunes.  Imagine the scene, if you can.  You're a sunbather on the beach, lying out on your towel and soaking up some rays.  All of the sudden, into your view comes this woman, her shoes in one hand, grunting and digging in her heels and muttering words probably not appropriate for public use.  She's straining to pull an expensive-looking stroller backwards across the sand dunes while a kid who's obviously more than big enough to walk is happily bouncing along in the seat.  What do you think?

Judging from the looks I was getting from the sunbathers, you think I'm totally insane.  And you'd probably be right, but that's beside the point.  Anyway, I hauled that wheelchair all the way down to the first set of driftwood logs, took off Connor's shoes, and plunked him down in the sand.  Rather predictably, he spent the first few seconds acting like I'd just immersed him in a tank full of piranhas, but after a minute or so I buried his feet, which actually calmed him down-- probably because the weight of the sand offered some deep pressure.  I sat there with him and took the opportunity to pull out the camera while I caught my breath and did my best not to steam about all the looks I was getting from the people around me, none of whom made the slightest attempt to help me get Connor down there despite the obvious trouble I was having and several of whom (mostly teenagers) were audibly laughing. 

And then the magic happened. 

Connor reached down without prompting, and began stroking the sand.  This is the child who reacts to anything touching his palms like it burns him.  I couldn't believe what I was seeing.  Then, wonder upon wonders, he actually dug his hand down, grabbed a fistful of sand, brought it up to his face and looked at it carefully for a minute before opening his palm and dumping it out.  That was the first time he had voluntarily reached down and picked up a fistful of anything other than the cloths we use to wipe his face.  Ever.

So you're this sunbather, and you roll over to your side again, and lo and behold that woman is still there and is now kneeling down in the sand clutching her son to her chest, laughing uncontrollably.  Also, for some reason, she's crying.  And you stare, and smirk, and still think she's crazy.

But she doesn't care anymore.

~Jess

In Which We Get A Bit Carried Away

Since our deck demolition today was cancelled, I spent a good portion of the morning designing the new deck for our backyard.  Or rather, I started off designing a deck, and then I added a patio and we needed a walk around to the front of the house and Jeremy suggested that maybe we should add a patio up there too and then I got a little sidetracked figuring out where I would put in some raised beds and four hours later I realized that the day was half over and I had yet to do a single iota of housework, which was what I was supposed to be doing this morning.  I used to laugh at those people who decided to renovate, say, a spare bedroom and then eight months later had a totally new house, but I'm starting to understand how that could happen.  This stuff is kind of addicting.

I think we'll probably end up doing most of these projects, though, because we're really committed to making the backyard as accessible as we can.  We crunched the numbers and since we're going to be doing most of the work ourselves it's more reasonable than you might think.  As things stand right now it's extremely difficult for me to get Connor farther than about fifteen feet into the backyard because the steps on the deck are rotting through and there's no hardscape farther in.  It's been interesting trying to figure out where to put the ramps off the deck (one down the side of the house and one onto the patio) because they have to be at least sixteen feet long in order to not be too steep, and we want things to be not just accessible, but beautiful too.  I think we've finally hit on a solution, and I'm excited to get started on it!  When we're finished, hopefully we'll have a yard that everybody in the family can use.  And also by the end I'm going to have a whole lot more experience in using power tools and shoveling concrete.  No doubt this will come in handy at the most unlikely moment. 

We ended up deciding to make one of the ramps run parallel to the deck (with a large landing at one end complete with bench) so that it doesn't stand out in the yard.  It will lead down to a large patio level with the ground and perfect for a barbecue area or a table.  A pathway from the patio will lead around the side of the house to another, smaller patio in the front yard.  The other ramp will go straight down the side of the house and end in a short path which will connect to the concrete pad already poured on that side.  We've also talked about putting in a couple of raised beds-- I can use one for a water table or sensory garden for the kids now, and as a vegetable bed later-- and possibly replacing the grass lawn in the back with an herbacious lawn mix like Fleur de Lawn.  This will be enough projects to keep us occupied for the next year or so, and then I'm sure we'll figure out something else we want to do.

We're looking forward to having a space that everybody in the family can use!

~Jess

In Which I Show You The House As It Currently Stands

Here's that picture-heavy house update as promised!

Just look at that beautiful fireplace!  All of the stone went on today-- including a beautiful flagstone mantelpiece-- and the floors are now finished in the mudroom, bathrooms, kitchen, dining room, living room, and library!  All of the indoor light fixtures are in, and the mudroom bench is painted.  The kitchen vent and Connor's ceiling are both primed and ready for their faux paint treatment.  This is a very long, very picture heavy post, so I'm putting in a jump so it won't take forever to load.  You can click on "read more" or on the title of the post to see all the pictures.  I've included "before" shots so you can see just how amazing the transformation has been so far!

As an aside, please note that all of the furniture in the before shots is not mine, but the previous owner's furniture, as I took the pictures shortly before we closed on the house.  While I freely admit that I am rather odd, I do not keep a display case full of gift boxes in my family room.  Really, I swear.

Anyway, on to the pictures!

Ask Jer: In Which You Never Eat Corn Flakes Again

Jeremy's post: Round 2.

"Have you played Valkyrie Profile yet? How is it?"

Sorry, I haven't played it yet. It is on my to-do list.

"Do you miss your old roomie Wilcox? Why did Stephen never date in college? Was he not good enough for the girls or the girls weren't good enough for him?"

Yes, although I don't think he and I were ever ol' ladies (roommates for non-Aggies).

I could be wrong, but I don't think Steven ever talked to girls at A&M, except for the girls in the band with us.

"for both of you where r the medical mondays?"

Loki ate them. Fear not, I plan to beat them out of him. (***It's me, Jess, interjecting, as this question is for both of us. Medical Mondays will resume as soon as I can reach my file cabinet with all my medical research in it again. Right now it is in the office, which is wall-to-wall boxes.***)

"Do you and Connor have races in your wheelchairs? I bet he kicks your a**."

Yes. On level, beveled, and uphill gradients Connor has a distinct advantage since he actually receives locomotion via mommy power. On a downhill I have recklessness on my side which allows me to achieve speeds at which mommy power cringes in horror and cars must swerve wildly to avoid me.

"If your remote control could be hooked up to only one thing in the whole world, what would you choose?"

Rowbert. If I could control Rowbert via remote I could use him in place of a large predatory animal and begin my crusade against stupid people. In his current form his attacks would be limited to things like, "Run Over", "Door Surprise Attack", or "Ankle Snapping Ramp Attack". With some Road Warriorish modifications (warriorish is now wordified) I'm sure Rowbert would be the bane of stupidites everywhere.

"What happened to your hedgehog?"

At first, I had no clue what you were talking about. Now I seem to remember having a stuffed hedgehog animal in college. I have no idea why I had such an animal or where it came from. I have absolutely no clue as to its current whereabouts. If it absorbed my passive aggressive violent side it is probably running amok.

"Was Afghanistan what you expected? If you were given the 'all clear' health wise, do you feel like you'd WANT to go back?

Given current circumstances, what are you hoping will be your next career steps?"

Yep. I expected a mountainous desert with landmines everywhere and a people whose culture is vastly different from ours and Afghanistan delivered. The Army is reasonably good at preparing units for the area they will deploy to. We received language and culture classes in preparation for our deployment.

If I were given the all clear health wise I would want to go back and I would be obligated to go back. My current unit is still there. However, the point is moot since I won't be given the all clear anytime soon.

Ideally, I will be able to remain in the Army. The military has started keeping more wounded Soldiers, including some amputees. I don't know a lot about options for continued service since this is my first time losing at minesweeper.

"What's your favorite way to spend time with Connor?"

Much of Connor's therapy could be considered play, since play is what children do. I enjoy trying to get Connor to explore new toys or play with his old toys in new ways. For instance, putting him into a sitting position and placing a toy just barely within his reach so he has to work to play with it.

"Will you be acquiring Diablo III, upon its release?"

Of course. Although I am more excited about Starcraft 2. Starcraft's plot was phenomenal in my opinion.

"....Ender's Game series by any chance?" (in reference to my answer in the last q&a I did about what books I read)

Yes. The sequels were decidedly not military sci-fi unfortunately. The parallel series about Bean was decent. At this point, however, they read like young adult novels to me. Jessie has just informed me that they are kinda sorta young adult novels.

"Do you have the Little Rabbit Foo Foo book (the one by Michael Rosen)?"

Nope. If I did I would definitely predatorize the heck out of it. Connor must understand that rabbits are an important food source for wolves, bears, and tyrannosaurus rex.

"Why not T Rex driving tanks?"

Unfortunately a T Rex is unusually large. We would have to design a really big tank for it to drive. We have plenty of people sized tanks that we could immediately man with velociraptors. It might be better to simply label a T Rex as a bipedal tank. Then we could call it TankRex.

"I usually read fantasy, but I'm discovering old Larry Niven and Heinlein and such. What are your favorite books?"

I definitely enjoyed Niven and Heinlein. A couple of books I have enjoyed are Armor by Steakly and The Mote in God's Eye by Niven and Pournelle. Pournelle supposedly has some good stuff. Let me get back to you later on this. I'm currently in a heavy sci-fi phase and am reading a lot of new material.

"what is walking like for him? what hurts the most and what is the most difficult part about it? in the end, is he supposed to have pretty much all functionality back? i remember Jessie mentioning something about not being able to move the foot sideways... will that remain?"

Walking is a fairly painful process at this point. I am able to use it for short bursts with crutches and even shorter bursts completely unassisted. There is a bit of general pain in the heel area and some sharper pains in the mid foot. The heel pain is probably directly related to the trauma and degradation of the fat pad. The mid foot pain is probably occurring because many of the mid foot joints have extremely limited mobility at the moment.

The recovery process has introduced me to the most painful experiences of my life unfortunately.

Currently, breaking up scar tissue is the most significant pain. This involves a licensed medical massage therapist putting deep, manual, pressure on the left calf wound area and the trauma scars on the undersides of my feet. When we started this process it involved me screaming and cursing into a pillow while hitting things and trying to climb the futon to get away. The scars have softened up and I usually only growl a little now.

Prior to that, the removal of the pins in my feet was amazingly painful. Pins are small metal wires that are pushed through connective tissues like ligaments and then driven into the underlying bone. This makes sure that ligaments and tendons heal correctly to the bone. Sometimes they came out with minor pain. Other times they had to get a pair of medical pliers (look just like regular pliers) to get them out. If pliers were needed it meant screaming and a few tears.

Removal of the sutures and staples wasn't too bad. It took a while to get them all. My feet and legs were still very sensitive at that time and this probably amplified the pain a bit.

I remember very briefly waking up as I was put back into my bed post surgery. My heels hurt a lot but I was very drugged up. I remember screaming a bit and begging for more morphine. Considering that my heels had just been cut up, drilled into, and probably hammered on with medical tools I am extremely happy that I was still very drugged up from anesthesia.

If you like corn flakes you need to stop reading right now.

Amazingly, the actual trauma hurt very little. Mostly I just had a very odd sensation in my feet and a feeling of lethargy. Imagine a bowl just slightly larger in diameter than your fist. Fill the bowl with corn flakes. Do not add any milk. Make a fist and rest it on top of the corn flakes. Now, with a quick and firm movement, push your fist down into the corn flakes. You probably feel lots of cracking and individual pieces grating against other pieces. Maybe you feel a few sharp pieces cutting into the soft tissue on your fist. That's what my feet felt like to walk on. Surprisingly little pain was involved. Just lots of crunchy.

If you like corn flakes you can start reading again. If you no longer like corn flakes, sorry.

The history of recovery from this type of injury is varied. Due to the pain involved with rehabilitation, many people stop therapy early or don't try at all. I am willing to tolerate pretty substantial amounts of pain though so the outlook is good. I am walking early for wounds this severe. More importantly, none of the foot joints are slipping which is great. Instability from joints slipping would have meant more surgeries to include possible amputation. Overall I would say the prognosis is quite good.

The left foot cannot make a full recovery due to the fusion of the calcaneus (heel bone) and the talus (ankle bone). My physical therapists report that with this fusion I will lose the ability to move my heel left and right. I do have the ability to move my fore foot and mid foot. At this point I suspect that this will only impact my ability to make rapid direction changes and possibly my ability to run. I might have a little bit of difficulty balancing on a beveled surface as well.

That's all I'm tracking for questions, so unless you ask more questions I will never blog again.

Out.

In Which Jeremy Takes A Stroll

Great questions, people! I'm not sure how many Jeremy will answer tomorrow, but he'll get to them all eventually!

I spent a good portion of today at the mall, where I found a store with a 90% sale going on, believe it or not. I picked up a really pretty silk dress for three dollars. Now that's what I call a sale! Perhaps I should go to mall more often.

In other news, Jeremy had a meeting with a lymphologist this week. A lymphologist, for those not familiar with the term, is a person in the medical field who specializes in the lymphatic system. At any rate, Jeremy was there to possibly be fitted for some special compression socks to help minimize scar tissue and to keep the swelling in his feet and legs down. Basically they're like knee-high super control pantyhose made out of spandex or lycra.

Unfortunately according to the lymphologist Jer's feet and legs are still too swollen to be able to use the compression socks. So she's going to make up both a lymphatic massage to help increase drainage and also a series of bandages for him to use until the swelling goes down enough that he can fit into the compression socks. Basically he'll look like a mummy from the knees down.

A mummy wearing velcro sandels. No really-- you can't wear closed-toe shoes with the bandages. It'll be like some sort of B horror flick: Ramses Goes To The Beach or something.

He also had a meeting with his physical therapist, and she was highly impressed by how well he's standing and moving around! She told him to be up on the crutches as much as possible, so he took her at her word and when I dropped him off at the gym today, he left the wheelchair in the van and spent his entire workout time without it! It's amazing to see how much he's improved just in the last couple of weeks. He tried to get around using a couple of canes at PT, but it didn't work out very well; he's not stable enough for that. So he's using crutches for now, and preparing for the future by trying to find a martial arts school that teaches the art of cane and walking stick fighting.

That's my husband.

~Jess