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