In Which I Try And Start Yet Another Project Because Evidently I Don't Have Enough To Do With My Time

So today after I dropped off the kids off at school, my mom and I took a trip up to Seattle to visit a huge architectural salvage place.  I was looking for a way to build a nice looking desk for my bedroom that would fit both computers (once Jer gets home we'll have two), and also have more room for files.  Currently I only have one nice, neat file drawer in my desk, and then a huge pile of file boxes stacked in the corner of the room with all the other various insurance and adoption and whatnot papers in them.  Since I don't think I'm going to find anything ready-made or custom built in my budget that will work, I need to make my own desk/work table.

It's a really long space-- 103 inches-- and I thought the salvage place might have a counter or a slab that would work well for the top of the desk.  We saw a few things that would have been really cool.  For example, they had a huge beautiful piece of hand-cut, inch-and-a-half thick tempered glass that was exactly the right size and was really reasonably priced, but it just wouldn't be practical in the space as it weighed something like 400 pounds.  Not only would I have serious trouble getting it into my house, but if I managed to drop it the thing would probably make a glorious hole straight through our floor.

So that was a no-go.  We browsed through long aisles of doors and iron gates, lingered on a scaffolding top for a while but determined it was too narrow to sit on top of a filing cabinet, and then finally ran out of time and had to go pick up the kids.

I didn't find anything today, but I'm not in a hurry.  Jer and I can make things work if we need to, so I've got time to find something that will really work in our space and isn't going to break my floor or empty my wallet.  I'll keep looking!

~Jess

In Which I Spend Way Too Much Time Decorating

Connor had a seizure (he's still getting over that cold) before school today and so I let him take a short nap on my bed while I got ready for the day.  We'd been back there for about ten minutes when I became aware of a smell filtering through the bedroom door.  This was not a pleasant smell.  It was more of a Something Is Very, Very Burned And Or Possibly In Flames Right Now kind of odor.

So this morning Eden discovered that if you put those vegetarian buffalo wings in the microwave and they are not hot after two minutes, which is the heating time on the package, it is not a good idea to put them in on high for six more minutes unless you prefer your fake chicken wings hot enough that they are actively on fire when you take them out.  Thankfully there was no harm done except for the fact that the veggie wings had to be put out in the sink and were inedible lumps of charcoal and my entire kitchen is now heavily perfumed in Eau De Charred Soy.  Yum.  Any suggestions on how to get the smell out of the microwave?

After I got the kids off to school (and then returned to Eden's school with a new outfit as her old shirt apparently smelled rather strongly of burnt veggie wings) my dad came by and we got to work hanging the wall sconces I bought for the master bedroom a few weeks ago.  Apparently what happens when I don't write for five months is I spend all that time and energy redecorating instead.  I've been slowly but steadily redoing our bedroom to make it more functional and welcoming, and I've pretty much got it the way I want it now.  Since Jer hasn't been home I've been making all of the decorating decisions, so the room is quite a bit more feminine than it probably would have been otherwise, but I think he'll probably be able to live with it.

Wall Sconces of Glory

So now I have a shag rug in there, and a super comfy zebra print chair, and a whole station with an electric kettle for tea and hot cocoa and a nice little plate with various kinds of chocolate on it, and lots of books, and plants (my bedroom is a cat free zone, which is why my plants are not all little chewed nubs) and my computer, too.  I'm currently wrapped up in my super fuzzy throw, sipping hot cocoa and stuffing my face full of Andes Mints while I'm typing, and since there's a bathroom back here as well I'm seriously wondering why I even need the rest of the house.  I guess I would eventually die of scurvy or something if I never came out of my room again, but it would take a while.  I've got a lot of chocolate back here.

Squids Make All Spices Taste Better

So anyway, Dad and I put up the wall sconces, and then I stood around for a little bit being proud of them and trying to figure out how to work every conversation I have for the next week around to wall sconces so I can talk about them, and then I got a phone call from Connor's school because his g-tube had accidentally been yanked out during a transfer and they needed me to come put a new one in so I had to stop daydreaming.  Hey, it happens.

After that we went to PT, where Connor tried out a new walker, and then we came home to find a package on the doorstep with my new food-safe tins I ordered to put all my spices in (told you I had the redecorating bug).  I spent Connor's entire nap time hanging my spice rack (two Gamble bottle crates hung vertically on the outside of my pantry wall) and transferring over all my spices to their new containers.  Then I hung a gilded squid over the whole mess, because squids are awesome.  See?

So now I can find all my spices, which will be really, really nice; this arrangement is a vast improvement over their previous corner cabinet home.  The rest of my house may look terrible (with the exception of the bedroom wall sconces, which look awesome) and there's a rather odd lingering smell of burnt buffalo spices throughout the whole place, but at least I'll be able to find my za'atar when I need it!

~Jess

In Which We Have A Near Miss

Today one of my neighbors came over and had a cup of tea, and as a result I ended up nearly killing us all, which made for an interesting day. 

We have a gas stove, and apparently when I took the kettle off the stove I accidentally jogged one of the other burner knobs just enough to turn the gas on.  It proceeded to leak through our conversation and well into the day.  Connor was down for his nap and I was unloading the dishwasher a couple of hours later when I started getting a pretty good headache and noticed there was a weird smell in the kitchen.  That's when I also realized it wasn't the fridge making that soft hissing noise I'd been hearing the whole time I was in there.

So I quickly turned off the burner, threw open all the windows, stuck the cats in their carriers and hauled them and Connor outside.  We spent a couple hours out of the house, and when we came back in the smell was gone and everything had aired out.  But I'm glad I noticed it before I decided to turn on my dishwasher, because blowing up my house was totally not on the agenda today.

Whee.

~Jess

In Which We Are All Sickykins

Well it was day two of Glorious Sicky-Family Bonding Time around here, and it was not particularly fun.  I don't get sick very often and Jer catches bugs even less than I do, so it's pretty unusual for us both to be under the weather.  Connor catches absolutely everything that comes down the line, so I'm not really surprised that he's sick.  Oh well; hopefully this means that we'll all recover at the same time, too.  There's nothing more exhausting than being sick and having a kid who is completely over the illness and just brimming full of health and energy.  I'd like to avoid that if at all possible.

So anyway we took it easy today; I made us some dark, extra-spicy gingerbread with lemon whipped cream and we spent the day munching on that and drinking lots and lots of soothing hot beverages.  I did make a small start on getting the backyard cleaned up for winter, but the rain drove me indoors pretty quickly.  I spent the rest of the day balled up on the couch watching the roller derby championships, sometimes with a little guy on my lap. 

Connor basically went from one cuddle session to another today, with a brief interlude for a bath with Daddy after he threw up all over the place.  Luckily he crashed tonight, so hopefully he's getting some healing sleep.  He's snoring like you wouldn't believe either, but it can't really be helped.  The poor little guy is pretty stuffy right now.

I hope we feel better tomorrow!

~Jess

In Which We Are Home!

We're back home!

I am utterly exhausted, so this post may not make a whole heck of a lot of sense.  Because we bought last-minute tickets, there weren't a whole lot of available flights left when we made our purchase.  Booking an airplane flight with Connor is always interesting because it's like playing Health Russian Roulette, and we don't like to speculate too far out in advance.  Anyway, I had to make a choice between booking our flight at an ungodly hour or having a five hour layover between flights.

So that's how we found ourselves getting up at 3:15 in the morning (1:15 in the morning our time) in order to get to the airport a couple of hours before our flight.  Glorious.

Added to the fun was the fact that Connor didn't get the memo about us needing to get up so early, and so he stayed up until the wee hours of the morning.  I ended up getting just under two hours of sleep, which is not a particularly good way to start out a plane flight.  Connor slept in the car on the way there and in the plane, of course.  I coped by consuming amounts of caffeine that probably should have caused heart palpitations. 

It's a good thing we didn't skimp on how early we got there before the flight in the interests of getting a little more sleep though, because Jeremy forgot to take Connor's extra formula and the camera out of his backpack at security so they had to search the backpack and send it back through the x-ray and then give him a pat down and I had to go through the scanner.  Connor got his usual pat down check, and they searched his wheelchair, of course.  Also they had to check all of Connor's medications to make sure they weren't illegal drugs or explosives or something.  They took extra precautions because somebody's g-tube pump came up positive for explosive residue again.  Whee!!!  We're guessing that this time the "explosive residue" was from when I stored a container of Connor's glycerin suppositories (we use them when he gets sick and sort of, um, stopped up) in the top part of the g-tube backpack a few weeks ago. 

So learn from my precautionary tale, gentle readers.  Don't store glycerin suppositories in anything you're planning on taking to the airport, okay? 

At any rate, it took us a pretty long time to get through security for obvious reasons, but we still didn't have to rush for our flight because we got there a full two hours early.  Not only that, but because the flight wasn't full and we were pleasant to the kiosk manager when we got the tags for our bags, the gentleman behind the counter let us know that the front row of the plane was totally empty and we could sit there instead of our cramped middle-of-the-plane seats.  So we got extra foot room and the full attention of the flight attendant, who thought that Connor might possibly be the Just The Cutest Child Ever To Draw Breath. 

Connor acted obligingly adorable the entire flight, of course.  He knows a good audience when he sees one.

Getting to the second flight was just a little more hectic; the Minneapolis airport (where our layover was) is laid out in the most ridiculous convoluted fashion and our connecting flight was on the complete other end of the terminal.  We ended up racing there at top speed and arriving somewhat out of breath just as the last large body of people on our flight boarded.  After another uneventful flight (though sans the adoring Connor fan, which made it slightly less pleasant) we arrived home.  I spent the rest of the day dragging myself around the house doing various chores, and Jeremy spent the day taking apart our washing machine, which is currently lying in about eight different pieces on our laundry room floor.

But we're home! 

~Jess

In Which We Look At Houses And Connor Loses A Tooth

It's been a week since Connor has had any seizures and he seems to be feeling pretty good right now!  I'm so glad that this round of good health has lined up with our vacation; he's been having a blast with his relatives and seems to be loving every minute of the time he's spent here.

We couldn't go out on the lake today because there's been an outbreak of toxic blue-green algae, which apparently can do glorious things to people like poison their livers.  So instead of hitting the water we hopped on the golf cart and went to look at the open houses in the area. 

Jeremy and I like to walk through houses that are for sale sometimes, not because we're interested in buying (and we are never, ever selling our house so we're not going to be interested in buying any time soon) but because it's neat to see what other people have done with their houses.  Most of the houses here are in close to the million dollar range, so they are really, really nice inside.  It's neat to see how other people lay out their homes, and right now I'm looking at their porches and gardens to see if there are any ideas I can incorporate into our space back at home.  We didn't stay out very long because it was ridiculously hot outside, but we managed to see three or four houses.  Some of them were pretty neat-- one even had a separate apartment built just for the owner's train collection!

What they didn't have, of course, was accessibility.  One of the first things Jer and I look at in a house now is how hard it would be to convert it into a wheelchair accessible home, and it's amazing how few homes have that potential.  Personally I think that any home-- especially one constructed in the last few years-- should be constructed with the idea that eventually the owners are going to become, you know, old.  And of course it isn't only old people that need accessible homes, as our family can certainly attest to.  But really there are so few homes that even have the potential to become accessible without tens of thousands of dollars of remodeling.  It's kind of short-sighted of our society to build them that way, in my opinion.

In other news, Connor lost his second bottom tooth today!  So now he has an adorable gap-toothed grin.  He's spending a whole lot of time sticking his tongue out right now; I think he's trying to figure out where the heck his teeth went.  Jeremy told him that his teeth were falling out because he has leprosy, and his nose will probably fall off next.  Then he sang Connor a little song about leprosy that he made up on the spot.  Jeremy is a great dad like that.

I made sure Connor knew that he did not have leprosy and his nose would not be falling off, of course.  But I didn't do it in song form, so it wasn't as well received. 

Mommy is No Fun. 

~Jess

In Which Connor Goes To Therapy And Has Homework

Connor had physical and occupational therapy today, like he does every Wednesday.  Today we were working on a couple of issues that have been concerning me of late.

The first issue is Connor's scoliosis.  Scoliosis, for those of you not familiar with the term, is a curvature of the spine.  Connor has always had a slight curve to the left because that's his weaker side, but since he's started having seizures that involve left-sided paralysis the curve has become more significant.  This is because for up to two days at a time after a seizure none of the muscles work over there, so he slumps pretty significantly to the left.  He also does it now whenever he's tired or isn't feeling well.

As a result, he's got a visible curve to his spine and one of his shoulder blades is rotated out.  Thankfully his spine is still flexible and the curve is still fairly mild, which means that right now he doesn't need surgery.  We're still planning on getting him some form of orthotics to help prevent the curve from getting worse; he's got a consultation for that on Monday.  In the meantime, our physical therapist showed us some positions and stretches we can use with Connor at home to help out his flexibility.  While I'm not concerned about the aesthetic issues involved with scoliosis, I want to make sure that Connor's spine is as healthy as possible and that his lungs and ribcage continue to develop properly.  I figure prevention is the best route so that we don't have to turn to surgical intervention later if the scoliosis continues to develop unchecked.

After PT we had occupational therapy, where we tackled the second issue.  We've been working with the iPad a lot at home, and as a result Connor is using his pointer finger more and more.  However, he's having trouble switching back to using his palm with his other toys.  Keep in mind that Connor doesn't like touching things; his palm is especially sensitive to touch and he avoids it if he can.  Now he has a fantastic toy that responds with him having to do as little as possible.  Why not use the same technique for all the rest of his toys?  So what we're seeing is that instead of grabbing or banging toys like he used to, he's instead barely touching the activating part of the toy with one finger and then expecting something to happen.  Because after all, it works with his iPad!

While it's awesome for us to be seeing that finger isolation, we don't want Connor to start losing the progress he's made in the desensitization of his palms.  So it looks like I'll be balancing out Connor's daily work on the iPad with sensory play focused on his hands.  Things like immersing his hands in various substances that he doesn't want to touch.  No doubt he'll be absolutely thrilled.

It's hard sometimes to know exactly how full to make his days; we can always be working on something.  I usually try and pick two or three issues to focus on at one time, and that way he doesn't get too overwhelmed.  I think we've got our goals set for the next few months; now I just have to figure out some fun ways to get us there! 

~Jess

In Which We Have A Largely Unproductive Day

Today we thought we'd go out and see Mastermind as a family, but somehow I managed to get the movie time wrong.  Then we decided to pick up How To Train Your Dragon from the store (one of our favorites for its fantastic portrayal of disabilities), but they were sold out.  We didn't really want to brave the crowds to see if we could go find it anywhere else.

So we stopped by a coffee shop and then went home.

I'm starting the long, tedious process of photographing pretty much every object in our house so that we can use the pictures for Connor's iPad.  I didn't realize quite how many toys, pieces of furniture and pieces of medical equipment the little guy actually has until I started trying to catalogue them all.  And after that I still have to take pictures of all of his therapists, teachers, friends, family and pets. 

I think it's going to take me a while!

~Jess

In Which Connor Plays Mr. Freeze

We keep our house relatively chilly in the winter time for a couple of reasons.

The first reason is that we don't like spending money on frivolous things like comfortable indoor temperatures when we can just throw about eight blankets on instead.  Turning our heat up above 62 degrees or so would seriously cut into our coffee shop and book funds, and as we all know those are necessities that Jeremy and I can't possibly live without.

The second reason is that our kid overheats at a ridiculously low level of activity because he doesn't appear to have functional sweat glands.  It's a heck of a lot easier to take a layer of clothing or two off of him to cool him down rather than changing the thermostat all of the time.  Since when he overheats he starts having massive seizures, the ability to cool him down quickly is rather important.  And since the bags of frozen peas are now reserved for icing my numerous roller derby-inflicted bruises, we just keep the house cool instead.

If it were up to the cats, though, it would be a bazillion degrees in here, I swear.  You would think that their nice thick winter coats would make them all warm and toasty, but apparently not.  Today was one of the first really cold and wet days of winter, though, so I turned on the fire and let it get up to a steamy 65 degrees.  This was Cricket's reaction to me turning on the fire.

Really, Cricket?  Aren't you being just slightly melodramatic?  It's not THAT cold in here.

Because it was pretty nasty outside, when we drove out to physical therapy I had the heater going full blast and Connor was dressed in his fleece coat.  For some reason, however, when we got to therapy suddenly the whole upper half of his body was freezing.  He has those weird circulation issues, but normally they're split vertically; the left half of his body will be cold and the right side hot (or vice versa).  Well, today apparently all the blood decided to hang out in his feet, because his face and hands became extremely pale and icy and I was a little worried he was going to pass out-- he kept trying to fall asleep on us.  So instead of PT we wrapped Connor up in a blanket like a burrito and he had a 45 minute snuggling session while we watched him like a hawk to make sure he wasn't going to start seizing or something.

The weird temperature difference faded as mysteriously as it began, and by the time we were supposed to do speech therapy and occupational therapy (we had a joint session scheduled for today) he'd perked up quite a bit.  Mostly he perked up enough to sign that he was ready to go home, and he rejected all of his favorite toys-- at least until another child came into the room for her therapy session and started playing with them.  Then suddenly he wanted all of them back.  Also he didn't like the girl and her family, and he wanted them to leave.  Now.  I'm pretty sure he didn't actually want to play with the toys himself, either, because he was still signing that he wanted to go home.  He just didn't want anyone else to play with them.

Not the most productive of therapy sessions.

Anyway, we got home and he had a couple more of those weird freezing/pale episodes, which is the other reason why I ended up turning the fire on and also messing with our thermostat-- much to our cats' delight.  And I wasn't really surprised when Connor had a massive seizure late in the afternoon, and I had to use the Diastat and then he spent the next hour curled into a miserable ball on my lap intent on covering every single inch of my shirt in tears and snot.  I kind of figured the odd episodes earlier in the day were leading up to some culminating event like that.  He finally calmed down enough for me to put him to bed, and then the little guy fell asleep in about five minutes.  Hopefully he'll sleep through the night and have a better day tomorrow.

On the plus side, I did manage to make it to the bookstore and the grocery before all of the weird-temperature-and-seizure fun, so at least I was well supplied with books, tea and Cherry Garcia ice cream to help me recoup from the day. 

You know-- the essentials.

~Jess


 

In Which Connor Has A Long Road To Recovery

This is what Connor looked like for a good portion of today.

It's hard to see how much this illness has knocked Connor back.  He's still a little too weak to sit in a fully upright position-- it makes him get all pale and wobbly-- so he spent most of his awake time snuggled up to Jeremy or me.  The rest of the time he was snoozing on our bed where we could keep a close eye on him.

He's still got a nasty cough that obviously doesn't feel so great.  The little guy also has scabs on his chest where the electrodes from his original ER visit irritated his skin.  In the hospital they used Colace drops to clean out his left ear (when they were checking for a ear infection he had too much wax in there for them to visualize), and now all of the skin is peeling off the outside of that ear and it's totally raw.  We may end up having to take him in for that tomorrow; I don't even want to think about what the inside of his ear canal and his eardrum looks like if that's what it did to the outside.  Needless to say he's not wearing his hearing aids right now, and I am just very, very grateful that they didn't use the Colace on him in its other, more common use-- as a stool softener.  That would have been horrible. 

But I think despite all that he's really happy to be home; we've seen a couple little smiles out of him today, which is certainly more than we've seen in the past week.  Jeremy's off again tomorrow because of the holiday, which I'm sure Connor will be happy about.  We have respite care for part of the afternoon, so Jer and I will get the chance to do a little recouping too.  I think we're going to go out and try some skating if we can find a rink that's open on Monday afternoons; Jer's been wondering if he can keep his balance on a pair of rollerblades.

We'll see how things go!

~Jess

In Which We Are Home!

We're home!

Connor had a much better night last night; he held his own and didn't need supplemental oxygen while he was sleeping.  While certainly far from well, he was much perkier and more like himself the next morning too, and the doctors decided that we could go home in early afternoon to complete his recovery there.  So off we went!

Connor is still pretty weak and sick, and so he's likely to spend at least another week out of school recovering, but we're happy that he seems to be over the worst of it and on the mend! 

Let's hope that his recovery is quick and smooth-- we've had more than enough excitement to last us for a while.

~Jess

In Which We Have A Mostly Quiet Day

Today it was back to drizzly, gray weather, so we spent most of our time quietly indoors.  I decided today was the perfect day to put together a project I'd been planning for a few weeks.  I've been wanting some artwork for the end of our laundry room wall next to our mudroom bench, and I've been in the mood for something a little whimsical.  So I started buying prints on Etsy-- most of them under ten dollars-- that all had to do with Little Red Riding Hood, or at least with girls in red cloaks.  Today I framed all of them with frames I either already had or purchased on sale from our local arts and crafts place, and hung them up on the wall.  I still need one more (possibly a doll or ornament-- you can see the space for it) to round things out and I plan to find a wolf portrait to hang on the adjoining wall, but otherwise I think it looks pretty good!

Oh, and of course I have books in my laundry room.  Doesn't everybody?

This is a major achievement for me, by the way, because I can't hang a picture level to save my life.  Hanging these took me a ridiculous amount of time, and they still aren't perfectly level but they're far better than what my usual hanging jobs look like.  I've tried enough tricks and hints by now to know that my ability to hang a picture crooked despite meticulous planning is an ingrained part of my personality and no amount of measuring, remeasuring, marking and leveling is going to correct it.  Oh well.  I think it will still look cute when I'm finished.

Connor had a pretty quiet day today too, though he did have about a 45 second seizure this evening.  I think the new medication is starting to have an effect; he didn't stop breathing at all.  He got a little blue around the mouth before we put him on oxygen, but his color came back nicely as soon as the cannula was in and he didn't have any problems after it was over.  We went ahead and gave him a single dose of Ativan, so we shouldn't see any more seizures for a while. 

Otherwise he spent most of the day critiquing my picture hanging efforts, singing little songs to himself while he played with toys, or hanging out with Jeremy, who goes back to work tomorrow after having taken a couple of weeks off.  It's been really nice getting the chance to relax with him, and he still has a lot of vacation saved up so we can do it again some time soon! 

~Jess

In Which We Encounter Nature With A Bang

There's never a dull moment around here, I swear.

This morning I dropped Connor off for school and then spent a quiet morning puttering around the house with my cell phone in hand, catching up with friends and family.  It is physically impossible for me to talk on the phone and stay in one place, so I was slowly circling the house, chattering away.  I was in the middle of a conversation with my friend Julia and wandering towards our dining room table when there was a tremendous BANG and our closed sliding door curtains rattled violently.  In the same moment Cricket, who had been curled up in between the closed curtain and the glass of the door, levitated backwards about four feet and then shot past me, puffed up to about six times her normal size.  After I quit screaming into poor Julia's ear, I cracked open part of the curtain and looked out. 

It was an owl.

A Northern Barred Owl, to be exact, and an extremely large specimen of one.  He was sitting on the deck a few feet back from the sliding door looking rather dazed, as if he wasn't sure exactly what had just happened. 

I'm pretty sure that owls have stellar eyesight and don't normally make a habit of flying into doors, especially those that have shut opaque curtains behind them.  He must have either not been looking where he was going, been going after another bird and didn't manage to pull up in time, or thought that Cricket's head, which was probably the only part of her visible through the glass, looked like a particularly tasty treat.  At any rate-- after a very worrisome minute in which Jeremy and I stared at the owl through the glass and tried to figure out who the heck we would call if it was injured-- the owl seemed to recover and flew up onto our fence. 

He sat there for about ten minutes or so recuperating.  Jeremy and I were able to go out and take some pictures of him; he didn't seem phased by us at all!  He spent much of the time looking around (completely around-- backwards and everything), squinting up at the sky, and then looking at the cats through the door as if to say "Um, what was that?"  Every time we moved he'd snap his attention back to us, but otherwise didn't show any distress.  I took these pictures standing about eight feet away!  It was pretty amazing because I've never been that close to an owl in the wild before.  He somehow managed to be intimidating, gorgeous and unbelievably cute all at the same time.  Now that takes talent.

See what I mean?  Isn't he unbelievably cute when he does that?

We went back inside after a little while to discover both of the cats crouched about ten feet away from the sliding door and staring fixedly at the owl, the fur completely raised up on the ridges of their back and their tails puffed up like bottle brushes.  Loki was growling loudly.  Both cats spent the next six hours startling at everything and tearing around the house at top speed.  It was hilarious.

The owl flew off into the tall trees surrounding our house shortly afterwards, but I could tell exactly where it was because all the birds in the immediate area were going nuts.  There are a lot of nests in those trees and the woodpeckers, crows, grosbeaks, and even the thrushes and sparrows were all calling as loudly as they could and gathering together in ominous clouds in preparation of dive bombing the owl.  He flew off for quieter realms and things immediately settled down, but for a while there it was a total cacophony of bird noises outside.

So that was our crazy wildlife encounter for the day.  I'm glad that all parties involved were okay!  While our cats are far too big for the owl to carry off, I would be willing to bet they are very happy right now that they are indoor cats.

~Jess

In Which I Write An Entirely Too Long And Sentimental Post About Adoption

I'm sitting here drinking a hot glass of lemon tea (with a generous dollop of honey, of course) and browsing the Internet for children's room decoration ideas.  Since Sylvie is going to another family, I've been trying to give myself some closure so I can start preparing for the next little boy or girl we select off the Waiting Child list.  Sylvie should be joining her new family this week, and I've been trying to picture how happy and excited that family must be to finally meet her and taking her home.  It's helped considerably knowing how much joy they must be experiencing right now, and I'm sure Sylvia will be in good hands.

Even though Sylvie never even knew we existed, I wanted to feel like she was giving me "permission" to start thinking about another child.  Call me silly, but I kind of felt like I a needed a little private ceremony to send her off, like the ones I had for all of the children I miscarried.  So I decided that I'd pick out something for the new child and think of it as a gift from Sylvie. 

Because we got Sylvia a stuffed animal owl as a first gift from us, I thought that something along those lines would be ideal.  Since I don't know yet how old our child (or children, since we're approved for a sibling group) will be though, I wasn't sure a stuffed animal would be appropriate.  So I bought two owl prints (from here and here) that I thought would work for either gender and pretty much any age-- heck, I'd hang them on my bedroom wall-- and I'm thinking of them as a sweet parting gift from the little girl we'll never meet, but will always have a special place for in our hearts.  The second one arrived yesterday, and I feel ready now to start concentrating on finding the child that's still waiting for us out there somewhere.

Okay, and to tell you the truth I probably would have bought these anyway.  Because they are really cute.

As far as that child goes, we're back to the proverbial drawing board.  We're perfectly fine with either a girl or a boy, which means we're much more likely to end up with a boy as there are many more available.  We figured either way we're still going to let them have their own room now though instead of making the boys (if the kid is a boy) share, since Connor's seizure medications have been giving him insomnia lately.  Besides, they'll probably end up sleeping with us for the first six months anyway.  We're approved for a kid (or kids) up to the age of nine with moderate special needs, and honestly there are very few special needs we wouldn't do.  We told the adoption agency we would do pretty much anything except for these four things:

1) Total blindness.  Because Connor can't finger spell into someone's hand and isn't using a computer to talk yet, so our kids couldn't speak to each other if child #2 is completely unable to see.  Also I am way, way too messy to have a kid who is blind-- I never put things down in the same place twice-- and our house is set up for pretty much any disability except blindness.  Not enough transition between rooms, too little color contrast, etc.  So total blindness is probably not a good idea.  A degree of blindness (and yes, legal blindness covers a wide range of vision; Connor actually qualifies as deafblind, believe it or not, because of his Duane Syndrome) would be okay depending on the type and severity of blindness.

2) Severe known behavioral, emotional or psychological issues.  Okay, so there's certainly a risk that any adopted child is going to end up with these due to their traumatic past, and if we end up with a child who fits in this category we'll deal with that as it comes.  Once we've adopted them that's it-- they're family-- and we'll treat them the same way we'd treat a biological child with these sorts of issues.  However, knowingly adopting a child with any of these conditions would not be terribly responsible of us, as Connor is nonverbal and completely unable to defend himself.  Not a good combination.

3) Moderate to severe cognitive delay.  So maybe this is kind of selfish on our parts, but we want our next kid to grow up and leave the house.  Really.  We're already planning our retirement for three, because the odds of Connor ever being able to live on his own are pretty much nil.  Not that we wouldn't be thrilled if it happened, but we're going to do the smart thing and figure he'll be right there with us.  A kid who won't be completely dependent on us for the rest of his or her life sounds like a good plan.

4)  Terminal illness.  We've lost enough children.  While we're planning for three as far as retirement goes, we are well aware that it's more than likely we'll outlive Connor by a good number of years.  So we'd rather not go there again if we can possibly help it, because with our next kid we'd like to try the novelty of worrying about whether or not they will grow up well instead of just worrying about if they will grow up.

Anyway, other than those four things we're pretty much completely open.  Deafness, limb differences, CP, cranialfacial issues, spina bifida, dwarfism, etcetera, etcetera, etcetera.  No problem.  Hopefully some time in the next week or two we'll go in to the adoption agency and start the process to be matched with a new child.  Because we're so open, I have absolutely no idea what that child will be like, but I'm looking forward to finding out!

In the meantime I'm preventing myself from going completely crazy by continuing to work on what paperwork we can do right now and also by planning the basic decor for our child(ren)'s room.  While we'll leave some things for when they get here so that they have to chance to help decorate the room to their tastes, things like paint colors and major pieces of furniture should already be in place before they arrive.  I like to bargain shop, so it's better for me to get an idea of what I want to do way, way in advance rather than trying to buy everything at the last minute. 

I'm finding it a challenge; designing a completely neutral kid's room isn't exactly a walk in the park.  But I'm deliberately thinking about a room for any child rather than a child of a specific age, gender or special need because until we have that kid physically on the plane I'm probably going to be half-convinced things are going to fall through again. 

I've come up with a general color scheme-- it's gray (along with that latte color and the shoji white trim that's in every room of our house) with turquoise and orange accents-- and I'll spend the next few months happily painting and buying furniture and doing my best to keep myself busy until the day when I've got a little helper (or two) to pick out the finishing touches. 

And I'll hang the pair of owls in a place of pride on the wall, so that when our child or children walk through the door for the very first time into the room where they will grow up, they'll receive a silent, heartfelt welcome home.

~Jess

In Which I Show You Our Completely Awesome "Oxygen In Use" Signs

So remember way back in March when I wrote about how we'd commissioned some stylish "Oxygen In Use" signs for our house?  We're required by the Fire Marshall here to post them since we use an oxygen tank whenever Connor has a seizure, but we weren't happy about the idea of posting one of those giant, nursing-home-type signs in the front window of our house. 

Since they don't have any regulations about what the sign looks like so long as it's clear on the "you can't smoke in here because there's oxygen in use" part, we figured we'd post an Alchemy request on the crafting site Etsy and see what we could come up with.  As several of you requested, I'd intended to show you the signs that came out of that project but I never got around to it.  Well, no time like the present!

We needed three signs-- one for our front door, one for our patio door, and one for the cabinet where the oxygen equipment is kept.  Over twenty artists made concept drawings for the signs, and it was an extremely tough decision trying to figure out which to go with!  In the end we chose a different artist for each sign: Chileary in Colorado for the sign in Connor's room, Metroink in Colorado for the front door sign, and Amberbrien in Montana for the sign on the patio door. 

There were some other artists with beautiful concepts-- so many that we wished we had more doors!  A couple of real standouts included Cjaneb877, who suggested ten different interchangeable seasonally-themed signs for Connor's room, and Montage, who proposed a front door sign that included distressed wood and stained glass elements.  You can see why it was hard to choose!

Anyway, here are the signs we ended up with:

Chileary did our front entry sign in green slate to compliment the colors of our house.  They took an element from the window in our front door and used it as a decorative accent. 

Amberbrian went with an Art Deco style for our patio door sign.  The vinyl window decal should hold up well to the weather, and the colors are drawn from the interior of our home. 

Metroink created a fun, lighthearted sign for Connor's room.  The simple laminated sign cleans easily and works well with the colors and decor.  The text reads "No Smoking!  (We've got oxygen in here!)" and there's a picture of an explosion with oxygen tanks flying out from the blast.

So there you have it!  We absolutely love the signs; I am a firm believer in the idea that just because something is required for a person with a medical condition doesn't mean it needs to be ugly, and to my mind these fit my principles to a T!

~Jess

In Which I Am Back Home

I'm back at the house!

Can you believe that was my first overnight-by-myself trip I've taken since Connor was born?  Only it wasn't really overnight-by-myself because I slept in the same hotel room as my parents.  But anyway, that's kind of crazy to think about.  Basically it means that I haven't slept completely by myself-- with no one else in house/building/whatever-- for four years.  Wow.

Anyway, the trip was a lot of fun, and I got to visit with a ton of my relatives: always a great thing.  What I did not end up doing was seeing much of La Jolla-- basically I got a brief tour of it and the surrounding San Diego area via car window while on our way to either the wedding, the reception, the hotel or the airport.  I have some lovely pictures on my cell phone taken out the car window of the various incredibly expensive cars people drive down there, which invariably ended up in the middle of whatever scenery I was trying to capture.  Seriously-- I have never seen so many Mercedes-Benz vehicles in my entire life. 

And now I can't figure out how to get them off my cell phone and on to the computer.  So you'll just have to imagine them.  Just picture a whole lot of very nice cars in front of palm trees and little pink or white adobe houses, and you'll pretty much have it.

Jeremy and Connor met me at the airport this evening, which was lovely.  Connor apparently did not even mention the fact that I was gone this weekend.  I guess he was having so much fun hanging out with Daddy that it didn't even register.  I'm glad he had a good time, though I am kind of sad that he didn't even miss me a little bit.  I wasn't gone very long, though, so that probably had something to do with it.  We went out for sushi, and the little guy behaved himself very well, and he went right to sleep when we got home.  Hopefully this is the herald of a good week!

And now I'm off to bed!  For some reason, sitting all those hours on a plane (I came back to Seattle via Albuquerque, which is what happens when you change your plans and buy tickets last minute) made me really tired.  You would think it would have the opposite effect. Anyway I had a great time, but it's good to be home!

~Jess

In Which Our Day Is Exponentially Better Than Most Of Last Month

Today it was back to business as usual! 

We did hear from the neurologist this morning, and he's got a new medication he wants to try Connor on.  However, the medication level has to be upped very slowly because the body has to get used to metabolizing it.  If it's upped it too quickly it can make all your skin fall off and die.  Um, ow.  So Connor will be building up to a therapeutic dose of this medication over an eight week period, while slowly weaning down off the Trileptal.  I don't want to get the name of the stuff wrong and we haven't received orders for it yet, so I'll wait to tell you the name of the new medication until it's sitting in my hot little hand.  I also spent three hours on the phone with the insurance company, because they are convinced that our pediatrician who moved away over two months ago (I believe she is currently in another country now, so that's about as far out of pocket as you can get) is still Connor's primary care manager even though she doesn't have any appointments available and obviously is not commuting to the hospital.  That would be a long commute.  So they won't assign us another one until we can prove that she is no longer here.  And we have at least three appointments we need to make with specialists, which require referrals from said pediatrician.  Also we have eight billion pieces of paperwork we need signed, also by said pediatrician, for school.  And did I mention that school starts in a month?  Glorious.

So anyway, to cheer me up after all of the hoops I had to jump through, we went to the library today and I let Connor pick out a new theme box for the week from a couple of choices.  He pounced on the "Fun With Music" box, and when I started pulling things out of it at the library to make sure they were all there before checking it out, he got really mad that I wouldn't let him play with the super-fancy keyboard (which I discovered when we got home is the Loudest Keyboard In The World) immediately.  So he started shrieking at the top of his lungs.  Still in the library. 

We checked out really quickly.  Connor trumps the keyboard in both the volume and the nails-on-chalkboard categories.

Then Connor and I sat down together outside and had what was probably a totally ineffectual conversation on appropriate behavior in the library.  And then we went on the swings, because they were there and about halfway through my lecture he stopped paying attention and started asking for swings instead.  I am completely incapable of denying my child something if he goes to all the trouble of asking for it, even if it is during my lecture about playing The Loudest Keyboard That Ever There Was in the middle of the library (though I guess I did deny him the keyboard, so maybe I just thought going on the swings sounded like a good idea).  Oh well.  He had a great time on the swings and burned off some energy, and then as a result I was able to actually go sit down with him in Central Perk-- one of my local haunts-- and read one of the random books I'd managed to grab off the library shelf as I rushed past with my firetruck-imitating child towards the check-out station.  It probably helped that I stuffed the kid half-full of gooey warm brownie as I was reading. 

Yes, I was a virtual paragon of fantastic parenting today. 

Anyway, then we went home and surveyed the sheer awesomeness that is now our front lawn, which put me in the best mood ever-- even a better mood than I was already in from the swings and the reading and the brownie and whatnot.  See, when we bought this house it was for three reasons:

1) It was in the Puyallup school district.
2) It was a rambler.
3) It had a bathroom that could be converted for wheelchair access.

That was it.  We didn't buy it because it was in a good neighborhood or had a layout we were particularly pleased with.  It was one of two houses we had to choose from in our price range that fit the criteria above in the entire city of Puyallup when we needed to buy, and nothing else-- even whether or not we liked the house-- had anything to do with our purchase.  Which is a really weird way to buy a house, if you think about it.

So anyway, we totally lucked out, because not only is our house now the most awesome house in the world and quite possibly the universe thanks to these people, and also these people, as well as all of these people, but our neighbors are also awesome.  I'm not just talking about neighbors who will wave at you when you go by in your car, stop on the sidewalk to talk to you, invite you over for dinner and barbecues, and even do a bunch of weeding and take your yard waste to the dump for you.  They do all of that awesome stuff, of course.  But these are neighbors that are so incredibly awesome that when they find out what an unbelievably horrible month you've been having and that you're having trouble keeping up with the front yard because you are spending all of your free time attempting to use massive amounts of chocolate to induce an amnesic state or possibly a coma as a defense mechanism instead of doing chores, they have people come in and clean up and mow and mulch and weed and trim and put new stone down at the curb and make your yard look about 8,000 times more awesome than it has since you moved in, and possibly better than it ever has in the history if its existence.  Yes, we're talking that awesome.  And then they refuse to let you pay for anything.  See how awesome our neighbors are?  I believe they are off the scale.  I would take pictures of it for you so that you can see just how amazing it looks right now, but then there would be pictures of the front of my house on the Internet.  So you'll just have to imagine the awesomeness.

So anyway, how's that for a fantastic day?  It involved the library, swings, a coffee shop, brownies, seriously awesome neighbors, a great looking front yard, and, maybe best of all, a happy, relaxed, seizure-free child.

Things are looking up!

~Jess

In Which I Swear We Moved To Mayberry

I spent a good portion of this morning transplanting all of the stuff I planted in front of the deck a few months ago to new locations in the yard so that we can get started with demolishing.  This was not particularly fun, as pretty much all the good spots had already been taken.  Our backyard has a lot of shrubbery, so most of the beds are at least partially shaded, which will change once we have the rest of the hardscape in and are ready to really start ripping up the old landscaping, but in the meantime poses a bit of a problem when I just lost twenty feet worth of prime sunny area.  Hopefully most of the poor, maligned herb garden, strawberries and blueberry bushes will be able to hold on until I can transplant them back to a spot with full sun.  That'll teach me to get overenthusiastic about putting things in the ground before we have a game plan for what we're going to do!

Connor spent most of today in a pretty good mood, which was nice.  He and his daddy spent a lot of time hanging out together-- always a fun activity in Connor's book.  I went down to our little coffee shop this morning and picked us up some breakfast, but mostly we stuck around the house and took it easy.  We did go over and have tea at one of the neighbors' houses in the afternoon, though.  It was lovely, which I'm not really surprised by-- we are lucky enough to be surrounded by genuinely nice people, most of whom have lived in the neighborhood for a long time.  Keep in mind that we selected this house because it had a bathroom we could renovate (one of two on the market in the Puyallup area at the time that fit the criteria we were looking for) and so nice neighbors, close proximity to the hospital, fire station, Connor's school, a park, and shopping areas are all just fantastic bonuses for us.  Seriously, what were the odds that practically the only house in Puyallup we could buy that could be renovated for our needs would just happen to be smack in the middle of Mayberry? 

I swear I keep expecting to hear Andy Griffith whistling when I go out to check the mail.

~Jess

In Which Connor Gets His New Bed!

Connor got his big boy bed today! 
Connor outgrew his crib a while back, and we'd rigged up a solution while we tried to figure out what to do next.  He definitely needed more of a railing than a toddler bed was going to give him, and he needed to be tilted up on the bed, but the only beds we could find that did everything we needed them to and would be covered by our insurance looked like giant metal cages.  Enter Bill Hines.

Bill (with Signature Custom Homes) came up with a design, and he has been working on this beautiful (and huge) piece of furniture for weeks.  I swear the man is a genius.  Not only does the bed blend beautifully with Connor's other furniture, but it suits our needs remarkably well.  It's the perfect height for me to slide Connor on and off the bed easily, once we've latched the side he's secure (since he doesn't stand there's no problem with him potentially climbing over) and with the application of a simple cordless drill the entire top third of the bed rises up as high as we need it!  Here I am applying the drill to get the bed ready for Connor sleeping in it tonight-- it looks jerky only because I am a drill novice and wasn't pushing the trigger smoothly.  How cool is that?

All of the wires for Connor's medical equipment feed through the bed so they're not within his reach, and there's extra storage for his supplies underneath.  Perhaps best of all, it does all of this without looking like an oversized crib or a giant animal cage.  And Connor is super, super excited about it-- he absolutely loves it!

Perfect.

~Jess

In Which Connor Has A Swing!

Look-- Connor has a swing! 

The little guy spends a whole lot of time indoors, especially in the winter time.  He's pretty temperature sensitive; he overheats really easily and wilts in rainy weather, so we have to be careful about the time he spends outside.  A lot of winter indoor activities, like visiting museums or public indoor play areas, tend to be overwhelming for him after short periods, so we have to limit our time there.  The little guy also spends a lot of time sick, and the recovery process-- when he has a little bit of energy and wants to play but isn't well enough for school yet-- usually takes days.

Also Connor seems to really enjoy swinging.  He craves a lot of vestibular stimulation, and we've even discovered that he's more likely to touch unfamiliar objects (which his sensory processing disorder normally makes him avoid like the plague) if he's on a swing that's gently moving when they're presented to him.  So we felt like it could be really beneficial for him to have a swing in his room.

The great thing about this setup is that we can take the swing down really easily and replace it with a different kind!  And it can also be safely stored away if we have typical kids over who would rough-house on it.  We're getting a gymnastics crash pad to go underneath the swing (which will come in handy for home physical therapy too), and Connor can't make it go himself so there's no chance of him getting overzealous and hitting anything. 

I think the next cold, rainy winter will be a lot more fun for Connor with his new swing!

~Jess