In Which It Heats Up

It got up to 95 degrees here today; it's currently past 11:00 at night and it's still 80 degrees in my house.  Connor's room has the window open, a fan at the window on, a bucket of ice positioned in front of the fan, and I've been sponging him down every twenty minutes or so.  If it's like this tomorrow-- which it's supposed to be-- we'll probably end up in a hotel for the night.  The night nurse won't be here, and sponging Connor off every twenty minutes through half the night isn't going to be a great option. 

Tuesday and our air conditioning can't get here soon enough!

Connor had a so-so day, he ended up having two seizures.  He had a couple seizures yesterday too; I think it's mostly weather related.  Even though we're spending the vast majority of our time in cool places, it's still a shock to his system every time we transition in or out of a place, and that can't be good for him.  Either that or he's getting sick, which would be bad news in this weather.  We really, really don't need him to have a fever and be dealing with hot weather at the same time.

The good news was that we didn't spend all day today trundling around the mall!  Another military family in the area graciously offered to let us come over to their air conditioned house and hang out, and we ended up staying for about four hours.  It was so lovely to be able to sit and chat with a pleasant person on a couch instead of spending all day trooping through the food court for the 800th time.  It was especially nice since Connor didn't feel well, so he could snuggle up with me and take a nap instead of spending all day in his chair.  And also he got to pet a couple of cute dogs and watch television, so other than the seizures it was probably a fantastic day in his book.

Thankfully it's supposed to cool down on Saturday, though we're supposedly going to have a thunderstorm.  We've had an unusually high number of those this year; this area has one of the lowest storm rates in the country so I usually only hear thunder a couple of times a year.  Unlike the heat I welcome the storms; they're one of the few things about living in Texas that I really miss. 

Bring on the cool weather!

~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 Connor Reminds Me Why I Love Our Night Nurse So Much

Last night Connor went down to bed on time.  Then he woke up around 11:00pm and decided he wouldn't be going back to sleep for the rest of the night.  Of course it's our night nurse's weekend, so I went through today on about a half hour of sleep.  So forgive me if this post is a little less coherent then normal; my brain isn't really firing on all cylinders right now.

How the heck did I do the whole sleep deprivation thing for six years before we got our night nurse?  Seriously, I have no idea how I was a functioning person.  And how the heck does Connor do it?  He was bright eyed and bushy tailed all day today, whereas I probably looked like I'd been drinking vodka with a sedative chaser.

As much as I would have like to have curled up in the house and stayed put all day, unfortunately it turned out to be just about the hottest day of the summer so far.  Since we don't have air conditioning yet (next week-- thank goodness!) staying at home meant we'd be risking Connor's temperature rising to dangerous levels.  So after I drank a ridiculous amount of caffeine we went to the mall, where we spent the next six and a half hours.  Here's what I learned from today's mall experience.

1.) Wear appropriate shoes.  Even though you are in a mall and not out on a trail somewhere, after six hours of walking around wearing sandals you can still manage to get blisters on your feet.
2.) If your kid starts shrieking at the top of his lungs and applauding, it is considered way more socially acceptable if he does it in from of the carousel than in front of the giant window display featuring new bra styles at Victoria's Secret.
3.) Riding the carousel on a half hour of sleep is a really, really bad idea.  You are already kind of dizzy and half delirious, and after a minute or two of spinning in circles you will come perilously close to seeing that food court chicken you just ate for the second time.
4.) Every time you make a circuit around the mall-- even you have been there for six hours and made about 50 circuits-- the girl who is trying to get people to take a survey will attempt to ask you to take it.  This holds true even if you have said "no thanks" on every one of those circuits.  The same goes for the guy selling gym memberships.  If you put your cell phone up to your ear and pretend like you are talking to someone every time you see them, they will let you pass them without following you down the mall trying to talk to you.
5.) If you do pretend you are talking to someone, remember to put your phone on silent when you have it up to your ear, especially if you have your ringtone volume turned up all the way.
6.) Bring an extra set clothes for your child and you, or you may find yourself making an unexpected purchase or two.  Incidentally, did you know that if you drop your iced coffee onto your kid's wheelchair and the top pops off, you can actually spray coffee in a radius of over ten feet?
7.) And finally, choose the mall with the giant chocolate shop inside.  It will be terrible for your diet and/or wallet, but very, very good for morale.

We got home around 7:00pm and it was still over 80 degrees in the house, so I gave Connor his meds and then we went and sat in a coffee shop until they closed.  It's a little cooler now, but I'm still sponging Connor down every twenty minutes or so to make sure he stays cool enough-- the water evaporating should help release heat in the same way sweating does for the rest of us.  I don't have to worry about waking him up, because it's a quarter to eleven and he still hasn't gone to sleep yet.  Whee.

It's supposed to be even hotter tomorrow, so we'll be hitting the mall again.  But hey, no seizures today.  And air conditioning next week!  Hooray! 

~Jess

In Which Connor And I Keep Our Cool

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

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

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

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

~Jess

In Which Connor Is Cooped Up

It's been a week of late nights for me; last night I didn't get home from derby practice until almost 11:30pm, and tomorrow I have a scrimmage that will put me getting home at around 12:30.  Even with that schedule I'm still getting way, way more sleep than I've gotten used to.  It's amazing what a difference it makes!

So I spent today getting some of Connor's medical paperwork squared away, catching up on laundry and, of course, gardening.  I tried digging out some more of the patio area but only got another foot into it before I started sneezing and itching again, so I switched gears and worked on planting out some of the pots on my deck.  It looks like it's probably going to be a bad idea for me to keep handling the grass since the hives are coming on much faster, so Jer is going to finish out the patio for me this weekend, because he is awesome like that.

Connor was in a bit of a mood today; he actually ended up taking two naps today-- the second one after he had a massive meltdown.  I think it's a combination of the heat outside and his teeth that's making him crabby.  We're being really careful to make sure he doesn't spend a lot of time outside, and so far he hasn't had any seizures, so that's good.  I think he's tired of being cooped up, though.  Thankfully it's supposed to be much cooler tomorrow and we'll be back to our glorious 60 degree weather by Friday, so it will be comfortable again for him and he'll be able to spend some time outdoors.

I think he's ready to get back outside and play!

~Jess

In Which Connor Doesn't Work Up A Sweat

Today we discovered a fun new medical diagnosis to add to Connor's long, long list of really rare stuff that I get to freak out about all the time.  This morning I packed my still-miserable child in the car and drove him down to the hospital for a sweat test we've had scheduled for a while. 

See, I've mentioned on here a few times that so far as we know, Connor doesn't sweat.  We've certainly never seen him do it.  But we didn't have an official diagnosis, and for a variety of reasons it was important for us to know whether or not he does in fact sweat.  To tell you the truth, I figured he probably did, my "momtuition" was wrong, and he just hadn't been doing a whole lot of things that would make him sweat.  I mean, it's not like the kid hits the gym on a regular basis or anything. 

So anyway, they normally do this sweat test to check for cystic fibrosis (apparently people with cystic fibrosis have a higher level of salt in their sweat than typical people).  We wouldn't be doing the actual measuring-the-salinity-of-the-sweat part of the test since Connor already has a genetic diagnosis and doesn't need any more, thank you very much, so we were only doing the collection part of the test. 

The tech attached a couple of electrodes with a gel on them that stimulates sweating to the underside of Connor's arm.  Then he ran a low electrical current through Connor's arm to draw the gel into his skin and start the sweating process.  Finally he strapped on what looked sort of like a little clear plastic bottle top to the area where one of the electrodes had been to collect the sweat.  He did the same thing for the other arm.  I bundled Connor up in a blanket and we sat out in the waiting room for thirty minutes.

What I think was supposed to happen is that the sweat would evaporate upwards, go through a little one-way valve and then condense inside the collection chamber.  What actually happened was absolutely nothing.  The collection chamber was bone dry.

My momtuition was right-- not only is Connor not sweating as much as other people, he's not sweating at all.  While there are perks to this (my friend Julia pointed out that Connor won't have to wear deodorant at all when he's a teenager) it's actually a pretty serious issue.  Because Connor doesn't sweat, he's not releasing heat the way he should, which can drive his temperature up very quickly.  And of course, when Connor's temperature goes up he has seizures.  It's likely I might have even induced some seizures by bundling him up too much during cold weather. 

And of course that doesn't make me feel guilty or anything.  We probably should have had this test done ages ago.

Also he's much more likely to get heat stroke.  We'll need to limit his time outside on warm days and make sure that we wait until the very last minute to put his jacket on when we go out in the fall and winter months.  An air conditioner for our home has suddenly become an absolutely medically essential item before summer rolls around again.  And good thing we were already planning not to take him to Thailand with us when we go, because he sure as heck won't be visiting now.

So Connor's new diagnosis is anhidrosis, which basically means "lack of sweating."  One of the medications Connor is taking could potentially cause it, but we suspect he's had the problem since before he started taking the Zonegran, as he's only been taking that for a few months and we've suspected he wasn't sweating for a long time.  We'll consult with Connor's neurologist in our January appointment to see whether or not we should switch to a different medication, but my momtuition says Connor's anhidrosis probably has more to do with his autonomic nervous system issues or his genetic condition than it does with any medications he's taking. 

It doesn't really matter what's causing it though; it just matters that we know about, have an official diagnosis and a general idea about risk factors for the little guy.  We don't have any plans to add a dermatologist to the list of doctors Connor sees right now, but we can always do so in the future if we need to as he grows older.

So yeah, new diagnoses are not particularly fun.  But think of all the money I'll save on deodorant!

~Jess