In Which Connor Hits The Road

Today was one of those days that I really needed a clone of myself; Eden and Connor both had appointments at the very same time in different parts of Puyallup.  Here's where one of the major advantages to adopting an older kid comes into play, though: Eden was able to just walk to the library after her dental appointment and wait there for me and Connor to finish up at physical therapy.

Both appointments went really well; Eden didn't have any cavities and, though she got a bit lost on the way to the library, kept a cool head and in the end was able to make it there without too much trouble.  She's really maturing, and I'm very proud of how she handled the situation.

Connor had his third session with the adaptive car he's learning to use right now, and this time I was able to get some video!  He wasn't quite as enthusiastic about it as he was last week, perhaps because he had a couple of short seizures earlier in the day, but he still did some excellent driving.

Right now he's using a head switch because his sensory issues keep him from pressing and holding down a button long enough to get more than a foot or so, and he's also only working on going forward at the moment. We're going to muck around with things in the future, though, and see what else we can do to expand his horizons!  So without further ado, here's Connor going for a spin:

He's doing so incredibly well with the car that we'll be adding in some occupational therapy specifically to see how far we can take this.  This is the first time Connor has been able to consistently move himself independently ever, and it's a huge step for him developmentally.  I can't tell you how incredible it is to see him make his own decision about where and when he wants to move.

Mostly, as it turns out, he channels Ariel from The Little Mermaid.  He wants to go where the people are.  And once he gets to the people, he quits moving and is perfectly content to sit there and look at his hands.  If there's too much noise or activity, he also shuts down.  I suspect that will improve with time; right now even though the car isn't hard work physically, it's got to be pretty mentally exhausting.  As he gets used to the idea that he can get himself around and doesn't have to concentrate quite so hard, I suspect he'll be less sensitive to what's going on around him.

Even though it's difficult, he's obviously having a fantastic time with it, though.  He'll stop at intersections and carefully peer down the hallway to see what's going on before moving on down the corridor.  He waves to everyone once he gets close to them so they can all tell him what a great job he's doing.  And when we go to take him out of the car, he signs "more" and then frantically tries to push the button to run away from us!  It's pretty cute.

So hooray for Connor!  The eventual goal is for him to be able to move himself around independently with a similar vehicle at home.  I can't wait to see what the cats are going to think of this thing!

~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 We Keep Late Hours And Connor Has Yet Another Chair

It's about half past two in the morning right now, and I'm still waiting for Connor to go to sleep.  There have been a couple of false alarms where I thought he was down, but it turned out he was just faking it and as soon as I tried to go to bed he woke up again.  I am not thrilled with this, as we've got a rather busy day tomorrow.  Oh well.  The pattern seems to be established that on weekends, Connor Parties All Night.  At least I get five good days of sleep a week!

Today we went and picked up Connor's bath chair, which was the last major piece of equipment we were waiting on in the large group of items we'd ordered in the last couple of months.  Connor had outgrown his old one-- his feet hung over the edge in a way that was probably pretty uncomfortable for him, and the velcro strap preventing him from falling off would barely fit around his waist.  So this is a nice new roomy one for him. 

The really nice thing about it is that it comes with a wheeled base, so I'll be able to get him in and out of it with the lift instead of having to bend over and pick up a damp, wiggly and as he gets older, increasingly heavy child.  I don't think our bathroom tile would be particularly forgiving if I slipped and fell carrying him and/or dropped him, so this is a very good thing.

The kid is now completely outfitted in chairs, by the way.  He has a wheelchair, toilet chair, bathing chair, corner chair, and leg positioning chair.  They all do a different job, of course.  All Jer and I have is a kitchen chair and an easy chair each, so it's official: five out of ten chairs in use in our household belong to Connor.  All he needs is a throne in the middle of our living room and he'll be good to go. 

I got the chance to go to a get together for a little bit with the lovely ladies on my roller derby team for a while tonight and really had a blast!  I'm seriously missing skating and getting the chance to hang out with them on a more regular basis, though I know that now isn't the right time to dive back in.  Hopefully once things settle down around here I'll be able to pick up my skates again. 

~Jess

In Which Connor Gets A Lift

Connor has a newly installed roller coaster in his room!

While Connor was at school today a very pleasant man from the pharmacy we order most of our equipment from showed up sopping wet (it was pouring outside) at our door with a ton of large interesting looking boxes.  Connor's new rolling toilet chair and his lift had both arrived!  He and I set the lift up in Connor's room and he showed me how to work it. 

Connor is about forty pounds of squirmy, wiggly kid now, and while I'm not to the point yet where I'm having a ton of trouble lifting him I know that day is rapidly coming, as he's certainly not getting any lighter.  He doesn't help or hold on in any way when you pick him up, and he has a tendency to try and launch himself backwards on occasion to make things exciting.  I figure it's a really good idea to have measures in place before lifting him really starts taking a toll on my back; that way I will be used to using it by the time he gets to a size where it's absolutely essential.  I'd like to save my back for times when we're out in public areas and I can't use a lift rather than straining it because I'm lifting him at home all the time.

So I know you all don't really care about why we got the lift now rather than waiting.  What you are all really dying to know is how much it can lift, and how long the pharmacy guy had been gone before I tried carting myself around in it.  The answers to those questions are: 440 pounds and about five minutes.  The sling is actually pretty comfortable, though your butt sticks out through a hole in the bottom so it feels kind of weird. 

Connor's still not quite sure what to make of the contraption; we tried it out at bedtime and he seemed to be okay with it, but he did keep asking us what the heck it was.  I'm sure he'll get used to it quickly.  Now I just have to remember that it's there and not walk into the pole at three in the morning when I go in to check on him during the weekend. 

Hooray for lifts!

~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 Connor Needs A Lift

Our respite care worker's care broke down yesterday, so Connor came along to Thai lessons.  It's getting pretty tough to carry him down the stairs, but with only a couple of months left before travel I feel like it's pretty important not to miss any lessons.  Towards the end he started getting a little loud, so we ended up leaving a bit early.  Otherwise things went well.

My little guy isn't so little anymore; I need to tie a brick to this kid's head!  I think his lift will be coming at just the right time, because he's getting increasingly difficult to haul around during the day.  It will be really nice to be able to make the transfer from his bed to his chair, out of the shower, and other places around the house. 

The lift will be portable too, so we can take it on trips with us, which should be really nice.  My back is starting to give me a little bit of trouble towards the end of the day after moving him around, so it will be great to have some mechanical help whenever Jer's not here to do the heavy lifting for me!

~Jess

In Which Connor's A Film Critic And I Speculate On Sibling Relationships

I tried introducing Connor to Singing in The Rain during his standing time today, and he was not impressed.  Apparently the lack of giant exploding chandeliers and musical murdering psychopaths was a distinct disappointment.  I guess we'll be going back to Phantom of The Opera tomorrow.

We received word today that his lift has been approved, which I'm pretty excited about!  It will probably take a couple of weeks to get in, but once it's here we'll probably start using it pretty quickly.  The little guy is growing like a weed, and it probably won't be too long before it will be pretty difficult for me to transfer him without some help.  Connor's night nurse is significantly shorter than me, so she'll probably be pretty happy about it too.

That is if we still have a night nurse by the time the lift comes.  No word yet on whether or not our insurance will allow us to continue night nursing after this week.  Sigh.

Oh well.  We'll deal with that if we need to.  Anyway, a few of you have asked whether or not Connor knows about Ellen and how he feels about his big sister to-be.  Connor has known about Ellen for over a year now; he waves "good morning" to her picture every time he goes to bed (there's a fourteen hour time difference between Washington state and Thailand).  He gets pretty excited when we talk about her coming to live with us and him having a big sister, but it's of course difficult to tell how much he understands.  I suspect he'll be pretty shy for a little while after she gets here, but only time will tell.

What I don't think we'll see is the same sort of decidedly negative reaction he displays whenever babies visit our house.  In my experience, once a kid is over the age of three or so he's generally perfectly fine with them.  I think it's because when a kid under that age comes over they are automatically the center of attention, so they become rivals for Mommy and Daddy's affections.  This is especially true when one of us is (gasp!) holding an intruding baby.  Horrors.

However, once a visiting child is old enough to walk and express themselves pretty well, usually they want to interact with Connor more than they do with us.  So instead of being interlopers, they become another source of attention focused on him, which the little guy is perfectly fine with.  I suspect that his sister will fall into this category.  Since she's over five feet tall we probably aren't going to be doing a whole lot of carrying her around the house, and while she'll of course be getting our attention too it's a different kind of attention than we would be giving an infant or a toddler.   He has very little problem with other children once they've graduated to kindergarten and up. So while we'll have to wait and see, I suspect the little guy will warm up to her pretty quickly. 

Hopefully Ellen will feel the same way about her little brother!

~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 Connor Straightens Out

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

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

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

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

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

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

~Jess

In Which We Have A Busy Day

Today was an extraordinarily busy day for us, so it was lucky that Connor seemed mostly recovered.  Of course he was still a bit cranky because for some reason he stayed up literally all night last night, but with all the sleep he'd been indulging in earlier in the week that's perhaps not a surprising turn of events.

We started off the morning with Connor dunking one of his hearing aids in my glass of milk.  At least it wasn't tea this time-- he does manage to dip his hearing aids into my beverages rather too often for it to be entirely coincidence.  So he went without his hearing aids today as his left one was drying out and he refuses to wear one without the other.

After that diverting adventure we were off to the hospital for Connor's first appointment of the day: his ankle-foot orthotic (AFO) casting.  The little guy was surprisingly patient with the two women who placed his feet on wooden bases cut to his size, used gauze strips dipped in plaster of Paris to fit the boards to the contours of his arches and then wrapped his feet from toes to midcalf in a cast, which quickly hardened.  Then they carefully scrapped a groove down either side with a razor and used medical scissors to cut his feet out of the casts, which were then put back together and covered with another layer of plaster of Paris.  These will be used to make molds of his feet so that they are able to design his AFOs to his exact size.  He'll have his first fitting for the resulting orthotics in about two weeks.

We took a short break for lunch and then returned to the hospital for Connor's second appointment of the day, to discuss wheelchair, bathing and commode chair options for Connor.  His current wheelchair doesn't give his back enough support but otherwise suits our needs very well.  Luckily the manufacturer also makes a wheelchair seat for the same frame with a hard back rather than the flexible one we have now.  That way we don't have to replace his whole chair; just the actual seating portion. 

We'll also be requesting larger sizes of his commode chair and his bathing chair, both of which he is rapidly outgrowing.  We're hoping to add wheeled bases to both of these so that we can use Connor's lift (once we have the lift) to get him into them and then move him into the bathroom already in his equipment.  The little guy-- or not-so-little guy, as the case may be-- is getting heavy enough now that my back is not going to appreciate me hauling him around the house very much longer, so a lift will be a huge help.

After that appointment we took another short break and it was on to physical therapy, where Connor spent a whole lot of time not really wanting to work on anything.  He was understandably a bit tired after the busy day we'd had and his sleep strike the night before.  He lasted the full hour but was literally shaking with exhaustion by the time we finished, and he fell asleep in the car on the way home.  Of course he's awake now and shows no signs of going back to sleep, but I really hope he gets a bit more than he did last night or he won't have a good time at school tomorrow.

Go to bed, little guy!

~Jess

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 We Chill Out And Connor Plays At Gumby

Photo taken by the talented Emerald England.

It's blissfully cool in our house, because we have air conditioning! 

The gentleman who installed it arrived this morning and was finished in about three and a half hours.  It's very quiet-- I can't tell when it's on unless I go stand over one of our floor vents, where it becomes very obvious.  I'm so glad that we don't have to worry any more about what the temperature is outside, because Connor will be comfortable and safe in our house.  I'm really, really not going to miss those twelve hour days in the mall.

Connor had physical therapy today, which went well.  His hamstring, torso and neck flexibility is slowly improving as I've started stretching him out two or three times a day.  He's still not really thrilled with the stretching (except for the torso rotations-- he seems to like those) but he's tolerating it a lot better as he gets used to the regime. 

The next step will be to order him some leg extension splints.  Basically these are wraps that will fit him from thigh to ankle; they have rods that will run down the sides of his legs to keep his knees from bending.  They help with stretching him out, and he'll also eventually be wearing them to bed.  I don't think he'll be terribly thrilled with that development, but it should really help with keeping his joints loose and mobile so he'll be wearing them anyway.  It'll be a while though, because we still have to order them.

Em stopped by shortly after Connor and I arrived home from PT to pick Mary up; they were headed up north so Mary could shoot some portraits for Em and her family as part of their photo exchange.  While she was here, she dropped off the rest of the gorgeous images she took of Mary, Connor and me, and they're all so good I can't figure out which ones I like best!  I'll probably post some of them over the next few days-- like this ridiculously cute shot of Connor in his fedora. 

He's totally wearing that hat on the first day of school, and if I can find him a pinstriped suit he'll be in that as well.  You only get to do the first day of elementary school once, and Connor's going to do it in style!

~Jess

In Which We Pose For Portraits

Connor, Mary and I got up bright and early this morning to head up the road aways for a photo shoot!  My sister is a talented professional photographer, and she'd made plans for a photography swap with Emerald England, another wonderful photographer who works in the local area.   Mary wanted Connor and I to come along for some sister and nephew shots, because she is awesome like that. 

Connor was not thrilled with this whole idea.  No one consulted Connor on whether or not he wanted to get up at early-o'-clock and take pictures, even if they were in a garden with gravel roads, which he considers far superior to any other type of road when it comes to entertainment value.  In Connor's opinion, he would have been perfectly fine if we'd taken off without him and let him sleep in. 

But Connor is not in charge around here, which is probably a good thing.  I don't have anywhere in the house to keep grizzly bears, sixty foot tall Christmas trees or the entire tulle aisle of the fabric store, which are all things he demands on a regular basis. 

Anyway, he was a good sport, though towards the end of the shoot he kept trying to fall asleep on us.  Em got some fantastic shots, despite having to work with the fact that my sister and I have the exact same facial expressions and also that Connor was there under protest and as a result Was Never Smiling Ever Ever Again.  He also felt looking in the general direction of the camera was a horrible idea and refused to do it on principle. 

Em did an amazing job with Connor; she didn't talk down to him, put him at ease quickly and he seemed very comfortable with her even if he wasn't excited about being there.  She even knew some sign language, which I think helped tremendously.  The shots that I've seen so far are stunning (if I get permission I'll post one or two here or put up a link to where you can find them), and I can't wait to see the rest.  I wish Jeremy had been able to come too; once Ellen comes home we'll have to get some new family portraits done!

After the photo shoot we drove straight over to the hospital, where Connor had his feet measured for his new ankle-foot orthotics.  Today they just measured his feet to make the custom foot boards for the AFOs, and in mid-September they'll be making the plaster casts of his feet.  Connor managed to try and fall asleep during this appointment too despite having someone messing with his bare feet, which is usually throws him into hypervigilance in anticipation of possible tickling. 

Connor was bound and determined to get a nap in, dang it.  He fell asleep again in the car, and one last time within five minutes of us getting home.  He ended up taking an almost four-hour nap, which is pretty impressive for a child who considers sleep to be more of a hobby than a necessity.  He really needs to get used to getting up early again though, because he starts school up in just a couple of weeks.  Hopefully he'll adjust quickly and we're able to get him back on an early routine before then, or he's going to have a long, long year.

Of course I also got to take a four-hour long nap, so I didn't really mind all that much.

We rounded out the day by watching a terrible movie (Mary and I have an ongoing competition to see who can find the worst B movie in existence) and then spent the late afternoon and early evening scouting out photography locations for the shoot Mary will be doing for Em and her family. 

All in all it was a pretty fantastic day!

~Jess

In Which Connor Straightens Out

Connor tried out some new leg braces today, and he was able to stand in them without a stander and just a little help from his physical therapist for balance!  It's been a while since he's been able to stand without support from the stander; not only did he regress quite a bit when he had all those seizures a year and a half ago, but his hamstrings are also getting tighter and that makes it more difficult for him to stand up straight.  This is a really common problem for children in wheelchairs because they spend so much time sitting with their legs bent at a ninety degree angle. 

He's getting to be so tall!  He comes up to my waist now when he stands.

The biggest issue with the leg braces is that they are hot, which is of course potentially a serious problem for Connor.  So we won't be using them at home until the air conditioner is installed, which should hopefully be happening any day now.  Once that happens, we'd like to work up to him wearing them all night while he sleeps.  It doesn't sound terribly comfortable, but if we can prevent (or at least delay as long as possible) him from needing hamstring release surgery that would be fantastic. 

Otherwise we spent a good portion of the day out and about again; it got up to 87 degrees today, which meant we needed out of the house.  Tomorrow hopefully won't be too bad, but it will start heating up again on Wednesday, and Thursday and Friday the predicted highs are in the 90's which means another twelve hour mall day. 

I'm getting really, really tired of the mall.  Hopefully our turn on the handyman's queue will be soon!

~Jess

In Which We Have A Helpful Home Visit

Today Steve, an awesome occupational therapist from Good Samaritan's Children's Therapy Unit, came to our house for an equipment evaluation.  Basically he took a tour of the house, checked out Connor's current equipment, talked with me about things we're having difficulties with, and then suggested ways we can change things to make things easier for the little guy.  Of course our house is already set up beautifully for Connor, but as he gets older new issues will crop up that we need to problem solve.

The biggest reason we asked Steve to come out was to talk about lift options.  Connor is over forty pounds now, and while I can still pick him up by myself in most situations, he's only going to get heavier and I'd like something in place before I start throwing out my back.  I have the most trouble getting him in and out of his shower chair right now, which is pretty low to the ground.  And while it's pretty easy to get him from his bed to his chair, it's a little bit harder going the other direction. 

A Hoyer lift just won't work for us; they're made to slide underneath a bed, and Connor's bed has a solid base.  Installing a system permanently in the ceiling would probably be pretty expensive.  So Steve recommended a system called the Voyager Easytrack, which is strung between two fairly narrow poles and is close to, but doesn't actually touch the ceiling.  Here's a video for those who are interested in seeing it.  Our insurance should cover it, and it will work with Connor's bed.  And since it's portable, we'd be able to pack it up and take it with us to use while traveling, which is a definite plus.  If any readers have used a Voyager or have other recommendations, I'd love to hear your thoughts.

Anyway, we also talked about getting a rolling base for Connor's shower chair and his toilet chair.  Right now his toilet chair attaches directly to the toilet in our hallway bathroom, and every time we have guests I have to detach it.  Once Ellen is home, she'll be sharing the bathroom with Connor and we'll have to move the toilet chair off and onto the toilet a lot more often, so it makes since to have one with wheels that simply rolls over the toilet.  That means we'd also be able to roll it into Connor's room when he's bigger and transfer him to the toilet chair using the lift.  The same thing goes for his shower chair. 

Steve also tweaked Connor's stander a bit to fit him better, and we discussed activity chairs for when Connor outgrows his current model.  It was really fantastic to have him here, and I'm so glad that we've got such wonderful people in Connor's world who help make his life as happy and healthy as possible!

~Jess

In Which Connor Takes A Stand

Thanks for the suggestions on bubble bath and chewy things, folks.  I'll have to go shopping and try out a few brands.  I'll let you all know if we find something that works particularly well!

It was lovely outside today, so after school I took Connor out in his stander and set him up in the shade while I did some work out in the garden.  He has a little tray in his stander with a well you can put things in, so I picked a bunch of different herbs and put them in there for him to explore.  He carefully felt each of them, and seemed to especially like the fennel and the borage.  I had to move him every ten minutes or so because my shade kept retreating; one of these days we're going to have a permanent shelter in the backyard that Connor can hang out under so that he doesn't overheat. 

He was doing really well, so when the sun slipped behind the clouds for a few minutes I decided to take him on a trip to the mailbox in his stander.  I don't normally roll him around outside the house in the stander, but he thought the trip down the ramp and the bumps in the sidewalk were so tremendously funny that I may have to make a habit of taking him around the neighborhood more often.  The stander is a little awkward for me to push because I have to hunch over a bit and there aren't any convenient handles, but hey, I'll do anything for that little squeaky bicycle wheel laugh!

Connor has finally worked up to consistently doing two full hours in his stander, which is really exciting!  Two hours five days a week is the minimum he needs to be doing to help his bones develop properly-- many kids in wheelchairs end up with spontaneous fractures because their bones are brittle due to lack of weight bearing.  So we can head off a lot of problems by sticking to a standing routine!  The trick is keeping Connor's attention for two hours so that he doesn't protest being in the stander-- towards the end of the time if he's bored he starts focusing on how tired he's getting and he begins fussing.  So a daily trip down to the mailbox or around the block in good weather may be just what he needs to distract him long enough to finish off his two hours! 

~Jess

In Which Connor Rides His Tricycle And The Day Goes Downhill

Connor's day started out pretty well; he and I slept in while Jeremy drove down to one of the local coffee shops and brought home breakfast.  I only have the best husband in the history of everything.

Anyway, Connor had a birthday party to go to in the afternoon so we figured we'd get his therapy finished early.  Jer and I strapped him in and he rode around on the tricycle in the house for the first time.  We need to get him a new helmet before we try out the trike outside (and besides, it was raining to beat the band today) but we figured he wasn't going to roll down any really fast hills inside so it was okay to try it out anyway.

Connor loves it.

Right now he doesn't have the muscle strength to make the bike move forward all by himself, but if you give him a little help at the top of each pedal's cycle he's able to push them down the rest of the way.  So we made very, very slow progress around the living room and hallway.  He won't touch the handlebars yet, which we pretty much expected, but it was exciting to see just how hard he was concentrating on pushing the pedals down and making it go! 

The tricycle wore him out much faster than we expected-- he only spent about five minutes on it before he was drooping in his seat.  We took him out even though he protested and he promptly went to sleep on one of our library chairs.  Jer took off for the gym, and our plan was to leave for the birthday party when he got back.  The little guy woke up about half an hour after he went down, had a small seizure, and promptly went back to sleep and slept until just before Jer got home.  He seemed to be feeling a bit down, but we thought it was because he'd worked so hard on his trike.  We packed up and left for the party.

We hadn't been on the road more than five minutes when Connor had a big seizure-- the kind where we have to pull over because he was turning blue in his chair.  He hasn't had a seizure that big in the car in several months.  Jer turned into an access road and we hopped out and lay Connor down on the van floor, where as soon as the seizure was over he fell asleep.  Obviously the birthday party was out of the question, so we turned around and headed home. 

As we were getting ready to put him down in bed I noticed his cheeks felt awfully warm.  Sure enough, the little guy was running a fever.  Guess who's sick again?  We gave him some Tylenol and he spent the rest of the afternoon asleep.  I hope he's feeling better tomorrow after some good rest-- especially since he just got over a bug. 

Being sick is no fun!

~Jess

In Which Connor Gets Some New Wheels!

We picked up Connor's new tricycle today! 

For those of you interested in specifics, it's the small Rifton Adaptive Tricycle in a lovely shade of blue.  I forgot to bring my camera with me, so sadly I don't have any pictures of him trying it out for the first time.  I couldn't recreate it later in the day, either, because he was so worn out from seizures (he had just one today, thankfully), school and the bike that he fell asleep in car on the way home.  Oh well.

While I'm sorry that I didn't catch his first ride on the bike, I think it's going to be fantastic for him!  Everything is set on the shortest or tightest position and the bike can accommodate a child who weighs up to 150 pounds, so he's got a lot of growing room. 

When they brought the trike out for him, he applauded-- that's how excited he was about having a trike to ride again after having long outgrown his other one.  Obviously he remembers those rides and is really excited about having some wheels again.  My only regret is that we didn't get him this one sooner! 

He wasn't able to move the bike himself in the pharmacy as we were on a rug that gave a little too much resistance, but he was trying so hard to push the pedals that his legs were shaking.  He's super motivated to make it go!  We'll play with it indoors until the next sunny day, and then I'm going to take it down to Bradley Park.  There are a couple of really gentle slopes along the trail, and I think that with that extra help he might be able to get the bike moving himself.  I'm hoping this will be a fantastic way to build his muscle strength and give him a way to be just like all the other kids at the playground. 

Hooray for new adventures!

~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 Gets A Chair

We had another busy day today!

Connor and I drove out to Olympic Pharmacy in Gig Harbor to pick up his corner chair, which arrived today.  Specifically, this corner chair.  We picked it over the others we looked at because it's simple, came with a tray and also because it didn't have any cloth pieces on it, so it's super easy to wipe down.  I think it's going to work out really well for him-- especially when he's using his iPad.  Once I get the H-harness adjusted correctly (he's not wearing it in the picture) I also think it will be good at preventing him from leaning over and exacerbating his scoliosis.  We'll see how that goes!

We also had a minor adjustment made to Connor's wheelchair; the back of the chair wasn't locking properly in place.  Luckily it turned out that the only problem was that the headrest was a little too low and not allowing the mechanism to fully lock.  So they just adjusted the headrest up a bit, and the problem was solved.  I love easy fixes like that.

After we were finished at the pharmacy we hopped back in the car and drove across the street, where we ate a late lunch in the cheapest restaurant available in the somewhat upscale shopping area.  I think we must have hit the restaurant on Active Elderly Women Lunch Date day, because they were everywhere.  Connor is an AEW magnet.  By the time we'd left the restaurant, we'd had no less than three pairs of women approach our table simply to tell me how adorable Connor was.  Connor gave them a halfhearted wave while they cooed over him and went back to watching the wind blow the patio umbrellas around outside. 

I swear it's like living with a celebrity. 

Anyway, it was a gorgeous day outside so we ended up walking around for a while, and then stopping by a plant nursery on the way home to pick up another shrub or two for the front yard and some seeds for the planned vegetable garden.  I have quite a bit of planting to take care of now, so I'd better get moving!

~Jess