In Which I Skate One More Time And Connor Looks For Moose

Our championship bout was a ton of fun!  We didn't walk away with the trophy this year, but nevertheless it was a fantastic game and I had a great time.  It's going to be really strange watching from the sidelines next season, but hopefully it will fly by and I'll be back up and skating the flat track in 2014.

While Jer and I were out doing derby-related activities, Connor headed off to Northwest Trek with his best friend in the entire world, C.  Northwest Trek, for those of you not familiar with this area, is a wildlife part of species native to Washington, and they have a tram that runs through an area of freeranging moose, elk, and buffalo, among other animals.  I didn't hear the report first hand, but apparently they had a great time taking the tour.  I'm sure Connor was pretty happy about seeing C too-- it's been a while since they've gotten together!

It's extremely late right now though, as I've just come back from the bout afterparty.  So I'm off to bed!

~Jess

In Which I Sleep Way, Way In And Do Some Digging

Connor was a little clingy today; basically any time he wasn't in my lap or Jer's he was yelling at the top of his lungs.  He knows how to make things happen around here.  I think he's missing his school routine and feeling like he needs a bit of extra attention. 

Jer let me sleep in all the way until early afternoon; I can't believe I slept that late!  I've been having a bit of trouble sleeping recently-- I think it's probably because we don't have blackout curtains and the sun is rising at five in the morning here right now since it's the middle of summer.  Evidently my body decided to play catch-up today, and he was a total sweetheart and let me sleep in.  I don't think I've slept that late in years!

Once I actually dragged myself out of bed, I went outside and finished cutting up the remaining sod in our future patio area into strips so that Jer can dig it out.  I had to stop digging it out and moving it myself when I discovered my glorious allergy to grass, so the project has been taking longer than I anticipated.  At this rate I'll be lucky to have a patio before Christmas!  Hopefully in the next week or so we'll be able to start laying gravel, and hopefully things will go a little bit more smoothly from there.

I just want to get it done before Ellen gets here.  I don't want her first view of our backyard to have a giant hole in it!

~Jess

In Which Connor Tries Some Performance Art

Connor managed to lose one of his ear molds at some point today, which is fantastic.  Thankfully we've still got the super expensive part of the hearing aid, and ear molds are not that difficult to replace.  We'll continue looking for it and see if it turns up, but I'm not overly optimistic.  Glorious.

Otherwise the little guy had a great day!  He spent over two hours in his stander, did some great fingerpainting, and splashed around in the bathtub with his daddy.  His method of fingerpainting is pretty funny.  I dip his hands in the paint, and he carefully wipes as much of it off of his fingers on to the paper as he can.  Then he wipes the rest of it on his stomach and hair.  After he's covered himself in paint, he looks at me and signs "more."  This is my cue to dip his hands in paint again. 

I took this picture right at the beginning of his painting process, but I should have taken one at the end too.  I'm pretty sure there was way more paint on my child than on the paper.  He looked a bit like a three dimensional Jackson Polluck painting.  Also I forgot to put saran wrap around his g-tube like I usually do, so it may be permanently stained blue.  Oh, and his hair may have a few lovely green streaks in it for a while, since his white-blond locks hold color beautifully.  They claim that the stuff is water-soluble, but I'm not convinced. 

Oh well.  I'll just spike his hair up or something and go for a punk rock look.

Yay for sensory play!

~Jess

In Which Connor Does The Wave

I was coming out of our bedroom this afternoon when Jer called me over.  He was standing just outside Connor's door, video monitor in hand.  Connor was supposed to be napping, but of course instead of snoozing away he was singing a little song to himself and staring at his hands.  Jer tilted the monitor so I could see and put his hand other hand on the door handle.  "You've got to see this," he said, and opened the door.

The second the door creaked open Connor's face lit up and he began frantically waving his arms in the air, which roughly translates in Connor's language to The Most Exciting Thing In The World Is Happening Right Now. 

Jer shut the door.  Connor's excited arm wave continued for a while, but when nobody appeared he slowly wound down, and then he went back to singing to himself.  Jer opened the door again.  Right away Connor grinned, looked towards the door and started waving his arms so hard his whole body was wiggling.

Jer shut the door.  After a little while Connor wound down again and heaved a big sigh before going back to studying his hands.  Jer opened the door again and the little guy immediately started his I'm So Happy That I'm Completely Freaking Out routine again.  This time we went in and got him so he didn't think we were teasing him too much. 

So other than confirming the fact that our kid is absolutely adorable, (which we of course already knew) we now know that he can hear his door opening even when he has his hearing aids off.  It has a pretty loud creak, which we've deliberately kept because it lets us know if the cats are trying to shoulder their way in if the door is cracked and we're otherwise occupied.  There's no way that he can see the door when the side of his bed is up, so he has to be reacting to the sound.  We don't think he's hearing the door close though (it's much softer closing), because he continues to wait for someone to come over for several minutes after it shuts.  It's interesting because his hearing drops off in the higher registers, so we're pretty impressed that he can pick out the sound. 

Also watching his face light up on the monitor when he realizes someone is coming in makes me feel all warm and fuzzy inside.  That's my little guy!

~Jess

In Which Connor Keeps Jer's Chin Up

Connor has picked up this absolutely adorable habit some time in the past few months; whenever he sits on Jer's lap and is concentrating on something, he reaches back and holds Jeremy's chin.

Jeremy usually responds by either talking to him or humming so that Connor can feel the vibration.  They'll sit together for hours at a time while Jer is on the computer or reading, and Connor spends a good portion of that time holding onto his daddy's chin while he's occupied with whatever he's doing.  I have no idea where he picked up the habit-- it's certainly a rather unusual one-- but it's pretty cute.  He's very gentle about it, so it's not a habit we feel like we need to break.  Smacking his daddy in the nose or something equally abrupt wouldn't be nearly as cute.

He doesn't do it with me-- he usually feels my arms or holds onto my hand.  Maybe my chin isn't as exciting because I don't grow beard stubble or something; I have no idea.  At any rate the chin holding is a daddy-only thing, and it's great that they have a special thing just the two of them share!  I think he's just double checking to make sure Jer's still there.  That's my sweet boy.

For some reason the little guy felt pretty under the weather today; he slept in super late, perked up for a bit but then crashed again in the afternoon, alternating between napping and throwing up all over the place.  I'm not sure what the heck that was all about.  Of course since he slept so much during the day he's wide awake now, but at least he's not throwing up all over the place anymore.  So that's a plus.

It may just be backlash from him staying up until two in the morning for a few days in a row.  Hopefully he'll go down soon, get a good night's sleep and be right as rain in the morning!

~Jess

In Which We Work On Things For Ellen And Have A Good Day

We've got another letter to Ellen off to the translator today; I've been having issues with my e-mail so it's taken forever to get this one out.  But I've finally managed to debug everything, so my attachments are actually working again and it's not a total crap shoot as to whether or not my e-mails get through or not.  Hopefully Ellen doesn't think we've forgotten about her!

I've also been working on a photo album for her; while she's seen pictures of us, she hasn't seen any yet of her other relatives.  Because she's old enough to understand family relationships, we're not concerned about confusing her with too many people.  This way she'll be able to have a bit of a head start on putting names to faces when we visit our extended family for holidays.  I put a pull-out map in the front and I'm marking where all of her relatives live.  Then each group of folks gets a page with a picture of them and a couple of facts about who they are.  Hopefully it will help her get to know our family a little better before she comes home.

We spent some more time out and about together today; I'm really enjoying having Jer home on vacation because of all the family time we're enjoying together.  We took Connor to the library, hit the cheese shop downtown, and just did a bit of walking around.  I think Connor is really enjoying having the undivided attention of both his parents all day.  This will be the last year he has us all to himself, so he might as well get as much out of it as he can!

We haven't received official word yet on when we'll be able to travel to Thailand, but based on the timeline of other families with our adoption agency we're expecting it to be sometime towards the end of the year.  Even though that still seems like forever to wait, in reality we're on the home stretch; December is only six months away!  We've been in this process with her since October of 2010 (and in the adoption process in general since April of 2010), so six months is definitely not that bad in the scheme of things. 

I can't wait to get her home!

~Jess

In Which Connor Is A Night Owl And I Skate Some More

Connor stayed up until 2:45am last night, but Jeremy was gracious enough to take the evening shift because I had a roller derby bout tonight.  Luckily tonight our awesome night nurse is here, so neither one of us has to stay up.  That's a good thing, because based on the noises I can hear coming from behind his closed bedroom door on the complete other side of the house I'm pretty sure he's planning on pulling an all-nighter.

We did keep him up pretty late; Jeremy took him to see my bout, which was closed to the general public.  We were playing the second highest ranked team in the country, so we got rather predictably stomped.  It was a lot of fun though, and it was neat to play on the track against some of the top derby players in the world.  It's also a big reminder of just how much I still have to learn!  While I'll be taking next year off from bouting to focus on our family, I'll still be hitting a couple of practices a week and once the kids are both in school I'll be really ramping up my crosstraining.  Hopefully that will help me out once I get back on the track in 2014.  Of course I've still got the championship bout next week before I finish off this season, so I'm not on my break yet.

While I won't be skating as much this next year I don't think my derby career is over by any stretch of the imagination-- I'm still having way, way too much fun to hang up my skates for good!

~Jess

In Which We Have A Family Day

We took Connor to see Brave in 3D today!  This represented a new level of moviegoing for us; it was the first time we'd taken him to a movie without having previewed it first to make sure it wouldn't scare the bejeezus out of him on the big screen.  It was also the first time we'd taken him to a movie on its opening weekend.  Surprisingly the theater wasn't crowded at all, and Connor seemed to really enjoy himself!  He behaved like a dream and didn't pull his glasses off more than once or twice.  Of course the movie had bears in it, which probably helped.  Connor loves bears.

We needn't have worried about the little guy making a disturbance anyway, because he would have been completely drowned out by the grandfather-and-grandson duo sitting a few seats down from us who kept up a running commentary at full volume the entire movie.  They advised us of their best guesses on future plot points, yelled at characters on the screen when they made poor decisions, and even made lewd comments about the female cartoon characters' bosoms.  Really.  They were quite the pair. 

Oh well.

After that we took Connor to the mall across the street, which is less a mall and more an indoor amusement park.  It has a black light miniature golf area, a giant bounce house play area, an arcade, a bungee jump trampoline, a rock climbing wall and a carousel.  We bypassed all of the other stuff and went straight for the carousel, which is major entertainment in Connor's world.  It has lights and mirrors and music and it goes up and down-- what more could a little guy fascinated with all of that stuff need?  So we bought a token and Jer boosted Connor up onto a giant wooden cat.  The music started and off they went!  I stood by Connor's wheelchair and waved every time they went by.  Connor waved back, when he wasn't busy looking at the mirrors or the lights.  I'm not sure he was waving to me, though-- he looked like he was sort of waving at everybody indiscriminately, like he was on a parade float or something.  He was pretty cute.

So overall we had a great day!  I'm glad the little guy enjoyed himself so much, and Family Days are always fun.

~Jess

In Which I Make A Poor Beverage Choice And Connor Feels Better

Connor seemed to be feeling quite a bit better today, which is good!  He didn't have any seizures today, and I think he's firmly on the road to recovery.  He's conked out right now, which is pretty great since it's our night nurse's weekend.

It may not matter for me though, because I made the mistake of ordering a chai latte off the menu at a restaurant I don't normally frequent.  At pretty much any other restaurant I've ever been to around here, this would indicate that I wanted chai with steamed milk in it.  Apparently at this restaurant, it means chai with steamed milk and a double shot of espresso added to it.  That drink is known at pretty much every other place around here as a "dirty chai," and I am not a fan.

Really, really not a fan.  Ew. 

Unfortunately, I'd gotten it on the way out and didn't take a sip of it until I was already halfway across town and well away from the restaurant.  Despite it being past five in the evening, and also despite the fact that the drink tasted horrible, my dang-it-I-paid-for-it-so-I-can't-just-throw-it-away instincts kicked in and I ended up drinking about half of the terrible thing.  And of course now I'm paying for it again, as I'm pretty sure I'll be up until four in the dang morning.  There's a reason why I used to use coffee to keep me awake during Connor's glorious marathon insomniac sessions pre-night nurse; I have a very low tolerance for it and it makes me wired.  A single cup of black tea is about all I can do after mid-afternoon and expect to fall asleep. 

Seriously, why didn't I just pour the dang thing out?  This was not the best judgement on my part.

Oh well.

~Jess

In Which Connor Is A Sleepy Guy And Jer Trains For Some Modeling Of The Peer Variety

Connor spent most of the day today falling asleep in various uncomfortable looking positions.  He dozed off in the car, in his wheelchair while we were at the grocery store, draped over the corner of the couch-- basically anywhere but his bed, where he refused to even consider closing his eyes.  He went to bed some time after midnight last night, so I guess the last couple of days are starting to catch up with him.

The good news is that he only had one seizure today, and he seems to have stopped running a fever.  So my guess is that he had some sort of little bug and he's on the mend now.  Unless he has a really tough day tomorrow, I think we can stay home instead of heading to the doctor's office. 

Jer spent most of today at a training session; he's becoming a peer mentor for the Wounded Warrior Project so that he can help other soldiers and their families through their recovery process.  I'd call Jer pretty well completely recovered (other than the whole half-a-missing-calf and the possible amputation a decade down the line) so I think he's in a great position to be a peer mentor.  Of course I have a completely biased opinion, but I think he'd make a fantastic role model.  He's certainly one of mine!

~Jess

In Which Connor Feels Hot And Cold

Connor slept for two hours last night and is apparently planning on staying up all night too, which makes me once again incredibly grateful for our awesome night nurse.  Otherwise I would probably be less than chipper tomorrow morning. 

The little guy seems to have something going on, though we're not sure what it is.  He seems to only be popping a fever in the afternoons and early evenings, but in the morning and in the wee hours of the night he's fine.  I'm not sure exactly what's going on there, but the temperature fluctuations are enough for him to have seizures.  He had four yesterday and two today.  We took him in to see the doctor this afternoon, and she ruled out the most obvious things: ear infection, strep throat, etc.  If he's still doing this weird coming-and-going fever thing on Friday, we'll go in again and she'll do some more testing to see if maybe he's got a UTI.  Whee.

Seriously, the little guy needs to feel better soon.  This is no way to spend the summer!

We had a brief meeting this morning at our adoption agency, and one of the little guys there, from India, was the very first kid we inquired about when we started our adoption process ages ago.  As it turned out we didn't qualify for the India program because we were too young, and there was already a family really interested in the kiddo anyway, but it started us on our adoption process.  It was really cool to meet him here a few years later and get the chance to see just how well he was doing with his family!  I thought that was pretty neat. 

Hopefully by the end of the year we'll be the ones bringing our daughter up to visit our agency!  We can't wait to get her home.

~Jess

I'm over at Hopeful Parents today-- you can find me over here!

~Jess

In Which Connor Is Sick Again And Our Yard Gets An Instant Facelift

Connor had his last day of school today, and it was a super small, laid back class.  I don't think he's quite realized he's out for the summer yet, so I expect him to probably freak out every time we drive by his school for the next couple of weeks like he did last year.  I think he figures I've just forgotten where it is or something, and if he can yell at me loud enough I'll clue in and go drop him off. 

We probably won't be driving by his school any time in the next few days though, because late this afternoon he started running a fever again and by the end of the day he'd had five seizures.  We'll be taking him in to the doctor's first thing tomorrow morning to see if they can rule out the most obvious things, like a return of his ear infection.  He's conked out right now, and we'll take it easy tomorrow too.

Jer's taking a few weeks vacation so that we can enjoy the summer together, and that started this week.  I'm enjoying having him home already; it's so cool that I can go to the bathroom without an audience in the middle of the day!  Otherwise Connor gets to be my bathroom buddy during the work week, since he needs eye-on care pretty much all the time.  Jer immediately got to work and pulled a bunch of weeds out in the yard, because he's amazing like that.  I'm a pretty lucky gal!

We have new neighbors on one side of our house, and they've been doing some hard work too.  Yesterday we heard a bunch of noise coming from that side of the yard, and then the big Japanese maple on their property that overhung our fence on that side started disappearing in large sections.  A few minutes later one of our new neighbors knocked on the door to collect the branches that had fallen on our side of the fence.  Apparently the tree whacked him on the face a couple of times while he was mowing the lawn, so he got out the chainsaw and chopped it down.  It makes me think we probably shouldn't get on our new neighbors' bad side-- at least anywhere that they have access to power tools.

They seem pretty nice, though.

Anyway, now our yard looks completely different; I keep looking outside and thinking something's missing.  It's that same sort of startled feeling I get when I look in the mirror right after getting a major hair cut.  It's way, way more open now near my herb garden and much more sunny.  The stuff that I had planted in that part of the yard was all for part shade, and now it's in full sun and in danger of frying.  So I'm thinking I might either need to transplant some things or else plant a tree of my own.  A dwarf fruit tree might fit pretty well in that spot, or maybe I'll put in some highbush blueberries. 

Decisions, decisions!

~Jess

In Which We Have A Good Father's Day

Happy Father's Day to all you awesome dads out there! 

Jer had a nice, quiet Father's Day, which is what he asked for.  He slept in, I brought him some breakfast and coffee, and then most of the day was spent lounging around.  This was good, because I was seriously sore after last night's bout.  I swear I managed to bounce every part of my body off the floor at least once-- at least that's what it feels like!  So it was nice that Jer wanted to have a quiet day anyway.  Connor thoroughly enjoyed his daddy time-- I'm lucky to have married such a great guy. 

Connor had one seizure today; he's been a bit congested so we're wondering if he's starting to get sick.  We'll keep a close eye on him and see how he's feeling tomorrow.  I'd hate for him to miss his last day of school, so hopefully he'll be doing better in the morning.  He's been grinding his teeth like crazy, so Jer picked him up a small mouth guard today.  It took Connor all of two minutes to figure out how to get that thing out of his mouth, so I don't know that it will do us a whole lot of good.  So I'll probably be calling up the little guy's dentist next week and we'll see about going in and getting something that's custom fit for him.  Oh boy!

~Jess 

In Which I Don't Really Write A Blog Because It's Super Late And I'm Tired And Stuff

It's really, really late and I'm letting Jer sleep in tonight because it's Father's Day, so I'm off to bed!  The bout was a ton of fun and I didn't break anything, Connor sat through the whole thing (well, almost the whole thing-- he fell asleep on me in the last half of the bout after mine) and overall it was a great day.

If roller derby bouts are going to wear Connor out that much, maybe we should take him to them more often!

~Jess

In Which Connor Graduates

Connor had his preschool graduation party today!  I got through it well, by which I mean that I did most of my weeping out in the parking lot after I dropped him off and only teared up occasionally while watching the picture slide shows with the sentimental music at the actual event.  I looked up his picture from his first day of school back in 2009, and I was a bit shocked at just how much he's grown.  Seriously-- check this out:



Connor on his first day of school in 2009




Connor on Pajama Day during his school's Theme Week this year

Whoa-- I've got a first grader now.  When did that happen?

Back in 2009, on Connor's first day of school, I was caught up in the crazy events surrounding Jer's injury.  I actually mention his first day as kind of an afterthought; I didn't have any idea what the next few months would bring and I was so wrapped up in what was going on with my husband that what should have been a monumental event for Connor wasn't something I could devote a lot of attention to.  However, even though in some ways things would have been much easier if we'd simply moved back onto the army post, we chose to stay in Puyallup because of the school program for Connor.  Looking back on the past three years, I can absolutely say we made the right decision. 

He's come a long, long way from that first day of preschool! 

~Jess

In Which Connor Is Way Too Big And I Get Ready To Hang Up My Skates For A While

I'm really tired for some reason tonight, so I'll make this a quick post!  Connor has his preschool graduation party tomorrow, and I'm probably going to cry because it's been such a fantastic three years for him and I can't believe he's going to be in first grade!  It seems like it was only yesterday that he was pint size enough to fit in the crook of my arm.

We've got some summer plans starting to come together; my parents are coming up in July and in August my sister is going to come visit.  It will be lovely to get the chance to see them and have fun exploring more of the Pacific Northwest with them. 

My roller derby championship bout is coming up at the end of June, and if you are in the area and want to see me skate and fall down many, many times in creative ways this will be your last chance for a year or so; I'll be taking next season off so that I can focus on Ellen's arrival and helping her settle in.  I'll still be practicing a couple of times a week (as opposed to my current four nights a week) for stress relief and to keep my skill level up until I go active again, but I won't be bouting.  So all you folks who keep telling me you'll get around to coming-- this will be your last chance for a long while. 

Anyway, that's about all the news I can think of for today.  I'm off to bed!

~Jess

In Which Connor Has A Field Day

Our school district had their preschool Field Day today, and all of the preschool students from this year (along with some upcoming students for next year's classes) turned out for an hour of fun!  The vast majority of the kids there were typical students, but a few of Connor's classmates came too.  There was an obstacle course, a parachute, face painting, coloring, sidewalk chalk, a sensory bin, a bubble blowing area and probably a few more things I missed. 

At first Connor didn't quite know what to make of the whole thing.  I think he assumed that we were going down to the Rhododendron Botanical Species Garden for our walk, which we usually do on Wednesdays.  He was a little taken aback by seeing his teachers out of school, and also all of the surrounding noisy activity.  After a bit of pondering, he apparently decided that the biggest issue was that his teachers and I were both there, so once that was fixed things would be okay.  So he started waving "bye bye" to me!  I think he wanted me to just leave him there with his teachers and come back in a couple of hours. 

Oh well.

Since most of the students in Connor's class didn't make it, he got the undivided attention of his teacher and the three paraeducators who made it for quite a while, and I'm pretty sure that was his favorite part of the festivities! 

After he got over the whole idea that I was sticking around but that he would still get a ton of attention from his teachers, he actually ended up having quite a bit of fun!  First we tried out the bubbles, but the wind was blowing a bit hard and they got away too fast for him to really see them.  So then we did some coloring, tried out the rice table and played "man in the middle" of the parachute.  The little guy started getting a bit overwhelmed, so we took a bit of a break while we waited for Connor's turn to get his face painted. 


This was the first time Connor had ever tried face painting, because he's a kid with sensory issues and those brushes tickle.  I figured trying something small would be best, and in a color other than red so if he immediately smeared it all over his face it at least wouldn't look like he was bleeding all over the place.  It took the face painter only a couple of minutes to dash out a quick spider on his face.  Connor did a great job!  He held still pretty well, and after checking himself out in the mirror he left the spider alone until we got home, when he promptly tried to smear it all over the couch and I had to wipe it off.

The Field Day only lasted about an hour, and that was the perfect time period because by the end of it Connor was exhausted.  Here's a picture of the little guy just before we headed home (with his mostly intact spider still on his face) and you can see just how tired he is.  All the noise and hubbub really wore him out, but I think he had a great time and I'm glad we came!

~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 Takes A Stand

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

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

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

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

~Jess

In Which Connor Continues The Daily Grind

Connor has still been grinding his teeth like crazy, so I went out and got him a variety of things to try chewing on.  The one that seems to be the most effective thus far is a plastic fish teether.  Though I'm not thrilled about him having a teether-- which isn't exactly age appropriate-- and wish that I could figure out something a little less associated with babies for him to chew on, it seems to be helping.  Cues haven't been working, and if we can't get him to stop he might eventually have to have a mouth guard to wear during part of the day, which we'd rather not have to do.  I think Connor would really struggle with that, and we hate to do anything to cause him distress if we have an alternative.  So I guess a teether isn't the end of the world in the scheme of things.

I figured the pool would be a little crowded today and Connor needed a bath anyway, so I filled up the tub, put on a swimsuit and the two of us splashed around for a while.  I brought in some bubbles, which went over surprisingly well.  I don't mean bubble bath-- I mean I brought in a tub of bubbles and blew them over the two of us in the bathtub.  Did you know that bubbles bounce when they hit the water?  Connor thought it was pretty cool, and he's not normally a huge bubble fan. 

I would love to give him an actual bubble bath, provided I could find a bubble bath that wouldn't make his eyes burn horribly if he got bubbles on his hands and then rubbed them in his eyes, which is likely.  Oh, and also doesn't cause him to have an allergic reaction, of course.  There are a ridiculous number of bath products out there with lavender in them!  If you've got any recommendations, let me know.  It won't be too much longer before he'll be too big to get in and out of the bathtub safely, and we'll have to stop our at-home miniature pool sessions and switch to strictly the shower chair.  That will be a pretty sad day for me!

~Jess

In Which I Have A Sort Of Wet But Really Fun Day

I think I slept on my neck in a funny way last night, because when I woke up this morning I discovered I'd pulled a muscle on one side, and turning my head to the left felt like I was driving a skewer through the base of my skull.  Does anybody else ever do this, or is it just me?  I have no idea how I manage to pull muscles while I am sleeping.  At any rate, I've been taking lots of ibuprofen today, which helped, and I'm thinking I may hit the hot tub at the YMCA tomorrow to help loosen it up a bit-- at least so I can turn my head enough during roller derby practice to see both sides of the track.

I spent most of today out washing cars to help raise money for the Make A Wish Foundation, which is to my mind definitely a worthy cause!  Despite multiple reapplications of sunscreen and overcast skies I managed to get a bit sunburned, but otherwise I had a great time.  Washing cars is a surprisingly good workout; I think it's all the squatting to get the wheel wells and whatnot that does the trick.  We had a decent turnout too, so we kept pretty busy.

Then afterwards we all went over to a teammate's house for a big barbecue.  While I adore my little guy and love being a full-time mom, sometimes it's really, really great to spend some time with other adults!  It always leaves me refreshed and ready to spend more time with the little guy.  Sometimes I can get a bit lonely; when Connor's having a rough stretch I can literally go days without seeing another adult besides Jer.  So I like to get my social time in while I can!  And of course I had a complete blast hanging out with my roller derby ladies.  Even though I've been playing for almost two years now I still feel like I stumbled on the cool kids' club in school and somehow managed to sneak my way in!

~Jess

In Which Connor Is Almost Done With School And I Prepare For Some Scrubbing Bubbles

Today was Hawaiian Day at school for Connor, so I sent him off in a tie-dye shirt and sunglasses, which was about the closest to Hawaiian I could scrounge up.  After two days of multiple-hour long naps and solid sleeping through the night, I think the little guy is fully recovered from his ear infection-- just in time for our night nurse's weekend.  He's squealing and giggling his little head off in his bedroom right now.  Looks like it will be a long night!  Luckily my kitchen is stocked with an ample supply of chocolate sour cream cake to help keep me going.

Connor has one more week of school and then he's finished with preschool and moving on to summer and then first grade.  He's come such a long way in his three years of preschool, and I'm so, so proud of him.  I'm also really not ready for him to a first grader, but I have a few months to come to terms with that.  In the meantime I can spend the summer in glorious denial.  Until September, every time someone mentions the words "first grade" I'm going to stick my fingers in my ears and go "La la la la la la!" because I am a mature adult and that's how mature adults handle things. 

Tomorrow I'll be pretty busy-- my roller derby team is raising money for the Make A Wish Foundation by washing cars as part of their Soaps It Up! Car Wash event, and so I'll be playing with water and bubbles all day.  Make A Wish has done some amazing things for a lot of Connor's friends, so I'm excited to be helping them out!  Stop by if you're in the neighborhood-- we'll be down at Hi-Tech Collision in Spanaway. 

Of course it's supposed to rain tomorrow, but I'm hoping it will hold off so we can get a good turnout for the kids!

~Jess

In Which Connor Shows His Team Colors

Today was Sports Day at Connor's school, so I sent him off decked in Texas A&M (where Jer and I met!) gear from head to toe.  I'm not sure anybody up here has any real idea of what an Aggie is as we're few and far between this far north.  For that matter Connor doesn't have a really good concept of what football is, and he's never seen a game.  One of these days I'd really like to take him to a football game down in College Station, but I'm going to wait until I think the noise wouldn't scare the bejeezus out of him.  I may be waiting a while-- Aggie football games tend to be a little loud.

His Aggie gear, brought to us by some awesome visitors a few months ago, is still quite a big too big on him so he was kind of swimming in it.  But hey, he's adorable anyway.

The little guy had a good day, and evidently they ran them ragged as he conked out this evening and looks like he'll probably sleep through the night for the second night in a row!  I would be way, way more excited about this if I was the one who had to stay up with him, but now that we have the night nurse I'm just glad he's getting a full night of sleep; I'll be getting one whether or not he stays up all night. 

Seriously, I have no idea how we survived before she started coming.  And you wouldn't believe the amount of money I'm saving by not having to drink six cups of coffee a day.

~Jess 

In Which I Find A Bouncing Baby Bird

After Jeremy came home this evening I ran off to the grocery store to pick up a few things.  I had just come up the front walk of the house with the groceries and had my hand on the door handle when I heard a tremendous fluttering racket.  A bird hopped up onto one of the chairs on my porch three feet away from me, and from there onto the table.  A very large, very black bird.  We stared at each other.

At first I thought it was a sick crow-- it was certainly the size to be a large crow-- but the proportions seemed off; its beak and feet were too large for its body and its feathers looked like they weren't quite grown in.  Also it had blue eyes.  Once it opened its mouth really wide and started yelling (and I mean yelling; it was loud) for food I finally figured out that what I was looking at was a newly fledged baby raven.

I didn't know a thing about ravens before we moved up here beyond the fact that they're featured prominently in Gothic literature and that according to my great grandmother, who knew someone with a pet raven named Jeb, they can be taught to talk and they like to steal cornbread.  I thought they were basically just slightly bigger versions of crows.  So I was blown away the first time I actually saw one here, because those suckers are huge.  We're talking a four foot wingspan, people. 

So now I wasn't nervous because I thought there was a sick bird on my front porch, I was nervous because there was a baby bird on my front porch with parents who are capable of killing baby cows (really) with their giant, stabbity beaks and who might be a wee bit overprotective of junior. 

I eased the door open and carefully slid inside.  The baby raven completely ignored me and continued pecking at the holes in the top of my patio table.  I opened the blinds so I could see what the heck he was doing out there and whether or not Mom and Dad were making a visit. 

The cats took one look and went nuts.  Despite the fact that this bird was literally half their size, had a beak almost two inches long and probably had homicidal parents hanging out somewhere nearby, they were both convinced they could eat him.  Good thing that they're indoor cats, because things probably would not have ended well.

Of course I had to take pictures, and not only was the window dirty but the cats kept blocking the view with their furry butts.  So I eased the door back open and, braving possible Death-By-Raven-Parents, snapped a few shots.  The baby didn't care in the slightest. 

He eventually hopped up on to the top of my geranium pot-- nearly knocking it over-- and spent another twenty minutes alternating between pecking curiously at the leaves and emitting air horn volume demands for food.  Then he clumsily flew off across the yard, hopped the fence and ended up over somewhere in our neighbor's backyard, where we heard him yelling for the rest of the evening. 

So that was my glorious Wildlife Encounter of the day!

~Jess

In Which Connor Feels Much Better And I Make More Ridiculously Complicated Garden Plans

Today was Camping Day at Connor's school, so I sent him off with a sleeping bag, dressed in a plaid shirt.  He was ridiculously cute, and other than my overwhelming desire to whistle "The Lumberjack Song" under my breath whenever I looked at him, the morning was uneventful.  He apparently had a bit of an upset stomach at school though, because he came home in different clothes. 

They absolutely wore him out too, because he crashed hard during his quiet time and slept for almost four straight hours.  I think that he's still recovering from his hard week.  He didn't have any Benedryl on board, either-- his hives disappeared overnight so we discontinued it.  I was a little worried that he wouldn't sleep at night because of his midday snooze, but he actually fell asleep on Jeremy's lap before his usual bedtime.  That was one tired kid!

I spent a good portion of the time he was asleep sketching up fanciful designs for a way to cover part of the patio we're making.  I know I want to eventually put in a sun/rain shelter for Connor so he can enjoy the garden all through the year, but I'm not sure where I want to put it yet!  I'd originally thought about putting it beneath the big trees at the end of the garden, but I'm concerned about disturbing too much of their root system, as the floor of the shelter would need to be ground level (or ramped) so that we could get Connor's wheelchair in.  So I'm thinking about covering a portion of the patio closer to the house. 

Of course it would be much easier to just install the patio shelter as we're building the patio, but I don't think that's in the budget or time scheme this year, so I'll spend the winter designing exactly what I want and maybe I'll make that next year's project.  Luckily the tiles that the patio will be made of are easy to remove, so it shouldn't be too difficult to pry some up and sink concrete piers if that's what I end up deciding to do!

~Jess

In Which Connor Goes To The Doctor And Sports Some Interesting Footware

First thing this morning I took Connor to the doctor's office to let them figure out what they wanted to do about his glorious case of hives.  I figured I would probably take him to school afterwards, since being covered in hives and all lethargic from Benedryl are not contagious conditions and we're coming up on the very last ever days of preschool.  It's theme week at school again, and today was pajama day. 

Connor doesn't technically wear pajamas anymore; since we found out about his anhidrosis we strip him down to a diaper at night and control his temperature with blankets, which are much easier to get on and off.  One of the side effects of this change in his former routine is that Connor no longer associates pajamas with going to bed, which means he could actually wear them this year instead of completely freaking out like he did last year.

Anyway, so I took Connor to the doctor's office in pajamas with tigers riding sleds all over them and his Cookie Monster slippers.  He was very cute.  Also all of the other kids in the waiting room were totally jealous and a couple of them asked their parents why they didn't get to wear slippers out in public.  Connor is good at starting fashion trends.

We didn't have an appointment, but since I called yesterday and left a message they knew we were coming.  The lab techs, receptionists, pharmacists and nurses all greeted the little guy by name when we walked in the door, because we spend way, way too much time at the doctor's office.  Connor's usual doctor was out sick today, so we saw his backup doctor instead, who complimented the little guy on his choice of footwear and then took a good look in his ear. 

He said it looks like things are on the mend in there, so the shot of Rocephin probably did the trick and we should hold off on giving him any more antibiotics for now.  We're supposed to bring him back in if he starts running a fever again and they can try something else. 

It'll take about three days for the Suprax to leave Connor's system, so he'll probably have hives for a while longer.  We'll keep dosing him with Benedryl until they go away.  As a result he spends a lot of time sleeping right now, but it's probably a good thing as the hives are obviously uncomfortable and his body is working hard to mend things.  He did enjoy school, so I think I made the right decision there. 

The hives already look much better, so here's to hoping the rest of the week things continue to improve, and by the time school ends he'll be back to his normal happy self!

~Jess

In Which Connor Tries On Polka Dots Again

My sweet little boy slept in until well after 11:00 this morning, and I figured he was mostly on the mend.  He was pretty fussy when he did wake up, but I thought that he was just to the point where he was feeling well enough to get cranky, if that makes any sense.  I left the little guy conked on a pallet next to Jer in the dining room and popped out to not one, but two bookstores because whenever Connor gets sick I run completely out of books and I needed to restock.  Also I wanted the next book in a series and the library's copy has been out for four months, dang it.

Connor spent the whole time I was gone fully clothed, under a blanket and snoozing peacefully away.  When I got home I figured he probably needed a diaper change, so I got everything ready and went to wake him up.  I rolled him over gently.  "Does his face look a little swollen to you?" I asked Jer.  We turned on the overhead light and discovered a bunch of tiny red dots scattered around his hairline and down the temple on the side he'd been sleeping on. 

I took off his blanket and discovered more red dots on his arms.  I lifted up his shirt and groaned.  The kid's torso was covered in hives.  So was pretty much all of the rest of the skin on his body except for the side of his face that had been turned up while he was sleeping.  Whee.

So apparently we can add yet another class of antibiotic (cephalosporins) to the growing list of medications Connor is allergic to.  We plugged the poor, miserable itchy little guy full of Benedryl and rang up the doctor on call, who told us to discontinue the antibiotic and head into the clinic first thing tomorrow morning.  While ear infections are usually the kind of thing we could potentially just wait out with a typical kid, it wouldn't be too great for Connor to go a week or more with a fever so we'll probably be trying something else.  Also it was apparently a pretty nasty infection, so the wait-and-see approach might not have worked so well for him anyway. 

Connor seemed a bit more comfortable after the Benedryl kicked in, but of course it knocked him out even more so he spent most of the rest of the day sleeping, either on his pallet or in my lap, where I'm sad to say he doesn't fit very well anymore.  And once we get home from the doctor tomorrow, he'll probably spend most of the rest of the day with me too.  He's still relatively pint sized, but with the way he's been growing I don't think that will last too much longer.  So I've got to get my snuggles in while I can.

I'm ready.  I've got six new books and I'm restocked on chocolate.  Bring on the snuggly day.

~Jess

In Which Connor Feels Much Better And I Play Some Roller Derby

Connor had an exponentially better day today when compared with the last few days!  Oh, we had a few small snags.  My alarm didn't go off for Connor's three-in-the-morning Tylenol dose so his temperature got up to 102.7 by the time we woke up, which of course made me feel like the most fantastic mom ever.  He spent the morning completely conked out on a little pallet we made up for him in the dining room and didn't spend more than half an hour conscious the whole first half of the day.  Once we got the Tylenol back on board his fever started to go down though, and by the end of today he wasn't running one at all. 

I had to leave the house early this afternoon to get ready for my roller derby bout, but Jeremy told me that the kid perked up in a major way and came down with a major case of the giggles: a sure sign that he's on the mend.  Even more exciting was that he didn't have a single seizure today!  I'm so, so glad that he's feeling better and that the worst seems to be over.  Since his fever is gone I'm hoping we've seen the last of his seizures for a good while. 

We had more excitement around here today than Connor's improvement, too; I played in my third home roller derby bout of the season tonight.  It wasn't so much a bout as it was a heart attack; I lost count of the number of times the lead changed, and the referees discussed the final score for over five minutes before reaching a verdict.  In the end, we clawed out a one-point victory and are headed to championships at the end of June!  I thoroughly enjoyed the bout even if it was completely nerve-wracking, and my knee held up well so that was a big relief.  I'll ice it tonight and take it easy tomorrow just to give it a rest.  Connor and I can convalesce together. 

I'm so, so glad we figured out what was going on with him!

~Jess

In Which We Figure Out What's Going On With Connor And I Get Kind of Sentimental

I found a barred owl feather outside my window today.

I hadn't seen our owl for a few months, and I thought he might have moved on to other woods or perhaps hadn't made it through the winter.  So I'd gradually stopped looking for him.  It made me so glad to see that he was still there, even if I haven't seen him for a while.  I brought the feather in and ran it through Connor's fingers, which made him break out in that wonderful squeaky laugh of his.  It's the first time we've heard that laugh in a few days.

It was after we'd brought Connor home from the local emergency room.  We'd taken him there after he had a five and a half minute seizure-- his sixth seizure of the day-- and we had to use his Diastat.  I called the doctor's office to give them an update on how things were going, and they told me to go ahead and just take him in rather than waiting until he'd had a fever for 72 hours, like our original instructions.

It didn't take the ER doctor very long to figure out what was going on; I knew the second Connor started struggling when they tried to put the otoscope in his left ear.  Connor is the most easygoing, laid-back kid in the world when it comes to doctors poking and prodding him, so if he's pitching a fit there's a reason.  Turns out that he's got a raging ear infection, which not only explains the fever and the seizures but probably also explains all the teeth grinding he's been doing recently.    So they gave him a shot of antibiotics and sent us home with a prescription and instructions to keep him on the Tylenol and Ibuprofen regime another 24 hours until the medication has a chance to do its work.  We also have instructions from his doctor to take him immediately to her clinic any time in the future he has a fever over 100 degrees and they'll fit us in so they can check him over and hopefully prevent another situation like this.

Sometimes I wonder what it would be like to have a kid who, if he got an ear infection, would just tell me their ear hurt instead of  landing in the ER after having thirty-five seizures over a three day period.  A kid where we had yearly doctor's visits to just one doctor and the occasional trip for some minor childhood illness, instead of sometimes two or three trips a month to ten different doctors scattered across four different hospitals in three cities.  A kid for whom walking and talking would come as easily as breathing, and who would bring home report cards with letter grades instead of giant complicated packets with goals that haven't changed for two years because they haven't been met.

What would it be like to worry about if my child is growing up well instead of whether or not he'll grow up? 

When I was pregnant with Connor and we first found out that he would have so many, many challenges, in my secret heart I wondered if it wouldn't be easier for all of us if he didn't make it-- if he slipped away before we ever met him.  Because while I had no idea what to expect the future years would bring, I knew things were going to be hard.  And I knew that my dream-- my naive, arrogant expectation-- of having a brilliant, athletically gifted child who would attend an ivy league school, inhale books, speak at least three languages and excel at anything they put their mind to was utterly shattered.

And it is hard.  It's so much harder than I ever could have imagined.  But that doesn't mean it isn't the best thing that's ever happened to me. 

If I could take away his pain, the difficulty Connor will have moving in the world among people who sometimes misunderstand or pity him, I would do that.  If I could give him more time, I would do that too.  Who wouldn't?  But otherwise I wouldn't change him, or my life, despite how hard things get sometimes.  I think that raising Connor, watching how he sees the world and realizing that every moment I have with him is a gift, has melted away so much of that arrogance and entitlement I felt before I knew him.  I'm still a flawed, imperfect person and always will be, but I think being Connor's mom has forged me into a much better version of that person than I would have been if I'd never met him.

My child may not ever head to college or run a marathon, but he's gifted nonetheless.  He possesses the ability, without ever speaking a word aloud or walking a single step, to touch people deeply on a primal level and bring out the best in them.  He brings a richness and a clarity to every moment I spend with him.  He's introduced me to a level of love so fierce it takes my breath away.  And he's stripped the superficial veneer away from my dreams and purified them so I've realized that even though I don't have the child I expected, I have the child I really needed all along. 

Sometimes the things you think you've lost are still right there, waiting for you to find them.

I love you, little guy.

~Jess