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 We Do Some Chores And Enjoy The Weather

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

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

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

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

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

~Jess

In Which We Make Plans To Hit The Trails

Connor and I drove out to Gig Harbor today so that we could stop by the pharmacy and do a bit of shopping.  The view out over the Narrows Bridge is just lovely, and it made me think about some of the things we did together last summer.  I've got a book called Accessible Trails In Washington's Backcountry that has a lovely list of trails all over the state we can take Connor to without any difficulty, and I think it's about time to pull it out and get ready for an outing or two! 

I took a good look at the book today, and apparently there's a lovely accessible trail on the shore of Lake Washington only about half an hour from our house.  They have a swimming beach too, but that's not something we'll take advantage of because of Connor's g-tube-- the lake water can leak in around the tube site and there's a lot of bacteria in there that he doesn't need to have in his digestive system.  I think the boardwalk and beach area would be pretty fun to explore, though! 

This will be the last summer that we'll be a family of three, which is strange to think about.  Next summer we can revisit so many places that Connor's already seen and rediscover them all over again.  I can't wait to see what Ellen thinks of all of our favorite haunts! 

~Jess

In Which Connor Has His Last Day Of School And Summer Decides To Finally Cooperate

Today was Connor's last day of school for the year!

I dropped him off for a last private hurrah with his teacher, her support staff and his classmates, and then around ten or so all of us parents came back to join the party.  We watched some really cute video compilations of the kid's year and ate popcorn and cookies.  Connor tried a few swallows of his first soft drink ever-- some Sunkist Orange-- and seemed to enjoy it.  He also clapped enthusiastically in all the appropriate places during the video and the subsequent certificate presentations; it was really cute. 

I'm pretty sure he doesn't realize school is over though-- I think he just thought we were having a fun party.  I'm expecting that he'll probably start yelling every time we pass the school for the first couple of weeks of summer, just like he did last year.  I'm thinking the yelling means "Hey Mom, you missed your turn!" or something to that effect.

The weather decided it was time to celebrate too, and we had our first really gorgeous day of summer.  To make things even better our Community Supported Agriculture program finally brought in the first of the strawberry harvest!  All the berries are running about three weeks late because of the even-more-gloomy-than-usual weather we've been having this season.  These aren't the giant, firm strawberries you see in the grocery store; they're the bite-sized, incredibly ripe, delicate strawberries that are incredibly delicious but that don't store more than a week.  Trust me when I say that this is never a problem in our household.  Normally they're all gone by day three.

Despite the great weather, we're going to have to figure out some fun things to do indoors this summer-- at least until the weed pollen goes down!  I can't have the little guy breaking out in hives every time we go out on a field trip.  We'll hit all the museums, the aquarium and spend lots of time at the library again of course, but I'll have to start thinking up some new places to go too.

Bring on the summer!

~Jess

In Which Connor Has A Sad Hat, And Meets Some Reptiles

Today Connor and I met some friends downtown for the weekly Concert in the Park put on by Puyallup's Parks and Recreation department.  These are kid-friendly concerts and activities that happen every Tuesday during the summer.  This week's show was called Reptile Isle, and basically it was an educational show where they brought out a lot of exotic reptiles and allowed the kids to interact with them.  Reptiles featured included an African Spurred Tortoise, an albino Burmese Python, a small American Alligator and a juvenile Komodo Dragon (with two tails!).  It was really cool to get the chance to see all of the animals, though the park was packed and we ended up having to leave early.  Connor got overheated pretty quickly even though we were sitting in the shade, and dissolved into a puddle of red-faced grumpiness.  Oh well; what we did see was pretty neat.

Connor did keep his hearing aids on during the show, which was great because I wasn't sure what I was going to do if he started pulling them out, as it was really too hot outside for me to be using Sad Hat.

Yes, that's right.  Sad Hat.

Sad Hat is what Connor has named his new hearing aid retention device.  Basically I sat him down yesterday and told him that he needed to start keeping his hearing aids on, and that if he pulled them out repeatedly he was going to have to wear the special hat I ordered a few weeks ago to remind him to keep them on.  I told him it was his choice whether or not he would wear the hat.  Connor did really well yesterday until he got bored with a toy he was playing with and I didn't get him a new one fast enough; out went the hearing aids.  So I put them back in for him, reminded him of his choice, and then when he immediately did it again on went the hat.  "Sad hat," Connor signed, making an exaggerated pouty face.  After a couple of minutes I asked him if he was ready to keep his hearing aids in.  He told me he was, and so I took the hat off.  "No Sad Hat," he signed happily.  He left them in for the rest of the day. 

Well, today when I put him in the van after we left the show he was tired and grumpy and hot.  I turned the AC up full blast and we headed for home.  When we reached the house I started unbuckling Connor's wheelchair from the van restraint system.  I looked up to see Connor fingering his hearing aids.  "Connor," I said, "you have a choice.  You can either leave your hearing aids in until we get inside and I take them out for your quiet time (i.e. nap time in which he no longer naps) or you can wear your sad hat until quiet time."

He looked directly at me, grabbed his hearing aid and yanked it out.  "Sad Hat!" he signed, and scowled.  So he wore the hat inside, glowering at me all the way to his bedroom where I put him down.

Ah, the joy of having a four year old.

~Jess

In Which Connor And I Moonlight As Mall Walkers

Today Connor and were originally planning on meeting up with some of his Deaf friends at the park, but instead we spent six hours at the mall.

I am totally not exaggerating, either.  We got there about 10:00 in the morning and stayed until 4:00 in the afternoon.  I don't think I've ever spent that much time in a mall in one stretch.  Oh wait-- except for last year, for the same reason.

Air conditioning. 

It was another scorcher today, and Connor didn't develop more effective sweat glands overnight or anything, so we had to stay out of the sun and in temperature-controlled environments.  Which meant no park.

Since the only places in the local area that have the blessed cooling machines are either retail or government buildings, that's what we were limited to.  While I wouldn't mind hanging out at, say, the library for six hours, Connor might have some extremely loud things to say about that (just because he's non-verbal doesn't mean he can't get his point across at top volume) so we needed somewhere with a few more distractions.  I decided, though, that if we were going to hang out in a mall for six hours it better at least be one with a bookstore in it.  So we drove to Tukwila and hit the Westfield Southcenter Mall.  It happens to be the largest shopping mall in the Pacific Northwest, so there was plenty to do. 

And oh, boy, did we have fun times.  First we made a full circuit of the mall, which took us a while as it has three floors.  Then we visited the bathroom.  Then we looked for some cute magnets for Connor's bulletin board, and didn't find anything.  Then we did another circuit of the mall.  Then we visited the bathroom again.  Then we looked for a cute hat for Connor and didn't find anything.  Rinse and repeat.  For six hours.

I am not really a mall shopping sort of person to begin with.  But Connor was actually having a blast-- mostly because they have really big skylights in the middle of the mall.  He loves skylights.  So I gritted my teeth and we continued doing circuits.  I figure I can count it as my exercise for the day.

We did end up making one major purchase-- a new set of clothes for Connor.  I decided to treat him and we ate at the Rainforest Cafe, which has neat animatronic animals that you pay through the nose for when you actually order food.  They also have giant aquariums full of colorful fish, which I (correctly) thought Connor would get a huge kick out of, so we requested seating right next to one.  He loved the place-- especially the giant mechanical butterflies-- so the elevated lunch prices were worth it. 

I got a half of a chicken salad sandwich (for me), a cup of tomato soup (for me and Connor) and a glass of chocolate milk, which was also supposed to be for Connor, though originally he didn't really want it and then later he became a little more intimately acquainted with it than he would have liked.  By which I mean that I accidentally knocked the almost-full glass over rather violently and it landed directly on his chest, soaking his shirt completely before ending up in his lap.  Connor then spent the next twenty minutes adding to the jungle ambiance of the restaurant by emitting ear piercing shrieks that luckily sort of blended in with the parrot sounds while I tried to dry him off as best as I could.  Since he'd already used up the extra outfit I always store in the car and it was now the hottest part of the day outside, I ended up buying him another shirt and pair of pants from the closest children's store we could find.  Luckily they were having a sale.

Just a couple of weeks ago I spent a bunch of time whining about all the rain we were getting, so I guess you could say I'm getting my just desserts now.  But I'm going to whine about the heat anyway. My bank account won't like too many more days as hot as these have been-- some of those stores were looking really tempting by the end of the day.

I think I'm ready for fall. 


~Jess

In Which Connor And I Take A Field Trip

This morning Connor and I headed up to the Pacific Science Center.

I've been trying to come up with a lot of field trips that we can take during the summer to give him the sensory stimulation of people, noise etc that he would be getting at school but I can't offer him in our extremely quiet house.  So I thought the Pacific Science Center would be a good place to find some of that-- and on a weekday with fewer people there it wouldn't be too overwhelming.

He had a great time!

His favorite exhibits were probably "Tropical Butterfly House" and "Dinosaurs: A Journey Through Time"  (because those two have so much in common).  He was rather underwhelmed by the "Body Works" and "Science Playground," and also with the animal exhibits (with the notable exception of the naked mole rat exhibit, which he flipped out over as Naked Mole Rat Gets Dressed is one of his favorite books of all time).  And he downright disliked the "Circus: Science Under The Big Top" and the "Puget Sound Model and Saltwater Tide Pool" exhibits; especially when I forced him to play dress up and made him stick his hands in the water activity table.  Horrors.

But overall I think he had a pretty good time, and the outing certainly served its purpose; to expose him to new things without completely overwhelming him to the point of meltdown.  Or at least, to delay the meltdown until bedtime, which is what happened.

Of course the meltdown might also partially have been due to Connor's medication change; the neurologist upped Connor's Trileptal again in response to the seizure (with paralysis for extra drama!) the little guy had on Father's Day.  Connor tends to get a little crabby whenever we change his med levels.  At any rate, we had a pretty good time, and I'm already cooking up plans for a fun outing tomorrow.

I'm sure we'll have a blast!

~Jess

In Which Connor Has His Last Day of School, And Murders An Octopus

Today was Connor's last day of school.  Can you believe it?

It seems like just yesterday I was dropping him off at school for the first time.  I don't really remember it very well because it was a scant month after Jeremy got himself blown up, so I didn't have time to get all sentimental about it because I was too busy freaking out over the fact that we were going to have to buy a wheelchair van and move.  This is one of the things the blog is great for, because not only can I go back to read about what we did that day, but I can see the occasional picture too.  And wow, has Connor grown.  The kid is officially huge. 

He had his big party at school today where he got to say goodbye to all the kids who were graduating from preschool and moving on to other programs.  Connor will be in the same classroom with the same teacher and paraeducators next year, and six of the kids who were in his class this year, which is great!  The party was a lot of fun, unless you were an octopus, in which case it was a horrific massacre.  The kids all made octopi out of paper bags for the occasion, and the teachers stuffed them with paper and a few pieces of candy.  Then each child in turn got to hang his poor doomed octopus on a string suspended from the ceiling and then beat the daylights out of it with a plastic baseball bat, in a sort of individual aquatic-themed pinata bashing.  Some of the kids got really into it, too-- they had to hold a couple of them back so the teacher could get out of the way before the bat swinging started.  The poor octopi, despite attempted evasive swinging action, didn't have a chance and it was soon over; the bits of paper octopi that littered the ground afterwards testament to the carnage wreaked upon the hapless cephalopods. 

But the candy was pretty tasty, so that was okay.

We also got to watch a really well-done video and photo montage of all the kids, which contained no violence towards octopi at all but did involve some rather hilarious JibJab renderings of the children doing various silly things.  We also ate cookies and received a lot of hugs: two of my very favorite things in the whole world.  And finally it was time to go, so after one last round of hugs we took off.  So now Connor has a whole summer stretching out ahead of him. 

Who knows what mischief we'll get up to?

~Jess