In Which I Dig A Whole Lot And Connor Is A Big Boy

I've had a ton more energy since I've actually had the chance to start sleeping this week.  Instead of doing something productive, like cleaning the house, I'm using it to dig a huge hole in the middle of my backyard.

Yes, it's the season for the Gardening Bug, which hits me every year right around this time.  Right now I'm digging the hole for what will eventually be our new patio.  I thought it was going to take me most of the summer to get this thing done, but it's going much, much faster than expected. 

I think I was basing this on how long it took us to get the deck done, but I'd forgotten that we had to dig the deck down as far as three feet or more in places to make it level, and I'm only digging down about four to six inches, depending on which part of the yard I'm in.  Also half the deck was in an area only about ten feet away from a couple of the neighbors' maple trees, and so was nothing but a giant web of tree roots.  The patio is in the middle of the yard and is blissfully tree root free. 

So in the past three days I've managed to dig out a little less than a third of the patio, mostly by working on it while Connor is in school because for some reason the little guy doesn't find watching me shovel a whole bunch of dirt to be particularly entertaining.  He gets this very concerned look on his face as he watches me work; I think he's wondering whether or not I've completely lost it and if maybe I should go lie down or something.

The birds also seem to think I'm insane, but they also seem to find it highly entertaining, as they've started congregating in ever-increasing numbers on the tree a few feet away from where I'm working.  Every time I take a wheelbarrow of turf over to the area where I'm piling it up (more on that project later) they fly down to see what kind of tasty bugs have been exposed in the area I just dug.  There's one chickadee who doesn't even bother waiting for me to move; he flies down and starts picking things straight out of the wheelbarrow.  Today he narrowly avoided being crushed on a couple of occasions because he didn't want to move out of the way for the next load.  Cheeky little thing.

So besides the hour or so I've worked on it while Connor was in school today and yesterday, I also spent some time out there this afternoon since Jer got off of work a little early.  That way Connor could hang out with him inside and do infinitely cooler things than watching me dig a giant hole-- like watching YouTube videos of people falling down in funny ways and He-Man lip synching terrible songs from the 1970s.  There he is applauding He-Man's performance.  Jeremy is ruining Connor's musical tastes. 

I swear Connor looks more like his daddy every year.  I mean, they have the exact same ears.  I totally didn't realize that until I looked at this picture.  Also that kid is getting way, way too big.  I'm going to have to tie a brick to his head or something.  He's cutting his six-year molars right now and I'm pretty sure next month he's going to be driving the car. 

Slow down, kid!

~Jess

In Which Connor Grows Some More And I Might Get Some Sleep

Connor got a haircut today, and once again looks a bajillion years older.  He was extremely good for his hair cut, and no ears were chopped off or anything.

He really looks six years old now, which is crazy.  I had to raise the height on his stander again today; I swear the kid is growing like a weed.  He's heavy enough now (over forty pounds!) that we're starting to talk about lifts and whatnot.  Luckily he helps a little bit when he's being picked up out of his wheelchair by pulling to stand, because otherwise my back would probably be killing me. 

We got a phone call from our insurance program yesterday, and apparently we should be hearing from a nurse triage some time in the next couple of weeks about starting up some night nursing for Connor!  I am incredibly excited about this whole thing, and I have absolutely no idea what I'll do with all of that sleep.  I don't think I've gotten eight full hours of sleep more than two nights in a row since the little guy was born, so this is a big occasion.  Hopefully we'll get that set up soon so that I can start catching up!

~Jess

In Which Connor Has A Sad Day And Is Growing Way Too Fast

Both cats are sitting on my lap right now, and Cricket is washing Loki's ears.  This can only end poorly.

Connor was kind of a sadkin today for some reason; I'm not sure exactly why.  He didn't have any seizures or anything; he just seemed to be kind of down in the dumps.  After we did his stander time today he actually had a little meltdown, and then he curled up on me and went to sleep.  I ended up taking a bit of a nap too.  Then he crashed hard when it was bedtime.  It could be that he's still recovering from being sick, and that's why he's sleeping so much.  Or maybe he's going through another growth spurt.  Who knows?

He's definitely grown by leaps and bounds in the past few months; he's actually on the growth chart for both height and weight for the first time ever!  He's in the 11th percentile for weight, and the 1.4 percentile for height.  Connor's g-tube has made such a difference since he had his surgery two years ago; he's more than proportionate now.  And he's got two more loose teeth, to boot.  I just can't believe how fast he's growing.  Can you believe he'll be six years old in April? 

It just doesn't seem possible.  I need to tie a brick to that kid's head or something.

And now as expected, the cats have decided to wrestle in my lap.  I am not thrilled by this development.  I'm trying to suggest they try play-fighting on the floor instead, but they keep flashing all these pointy bits at me when I try and push them off.  Glorious. 

Crazy cats.

~Jess

In Which Connor Is Huge

Connor spent some quality time in his stander today.  I set him up in the living room and let him watch an episode of Fraggle Rock.  Precious, mind-numbing television time will get this kid to tolerate just about anything-- that's why it's a special hospital-and-therapy-he-doesn't-want-to-do treat. 

Putting him in the stander reminds me of just how tall he's getting; can you believe how big the kid is now?  He just cut his first permanant tooth and everything.  When you consider that when we moved to Washington four and a half years ago he was the size of a Cabbage Patch Kid doll it's kind of amazing how much he's grown.  Oh, he's still tiny for a five year old of course, but he certainly doesn't look like a baby anymore!

He does, however, seriously need his hair brushed.  That's what it looks like when he wakes up in the morning.  He's kind of got that mad scientist vibe going, if you know what I mean.  He likes to rub his hands together too, so it always looks like he's plotting world domination or something.  It's pretty cute, but I still brush his hair anyway.  I figure if he's going to conquer the globe he might as well do it with neat hair.

He and I did a bit more yard work today, but mostly we stuck to the indoors as it was gloomy outside.  I'm not sure tomorrow's weather will be any better, but I'll have Joanna here for part of the day so I'll be able to work rain or shine without having to worry about the little guy.  Connor wasn't very enthusiastic about any of the chores-- even the laundry, which is usually his favorite.  I think I wore him out with his stander time and he was pouting because I made him work.  Oh well!

~Jess

In Which Blogger Exploded And Now Connor Is Following Suit

As most of you probably know, Blogger went down a couple of days ago-- hence no blogging last night.  It's back up now, but unfortunately your lovely comments on my last post were deleted in their system maintenance.  Sorry everybody-- I appreciated all your lovely suggestions!  I'd love for to repost them if you have a minute so I can go back and look at them the next time we put together a care package.

So on to today!  Connor, who has apparently decided that now is the time for a major growth spurt, now has two loose teeth-- both of his bottom front teeth are wiggly.  Oh, and did I mention that his six year molars are now coming in too? 

Needless to say, he's kind of weirded out about what's going on in his mouth right now.  He keeps carefully putting his fingers in there, feeling his loose teeth and then taking them out and looking at them like there's something wrong with his fingers and that's why his teeth feel so strange.  He's also running his tongue over them a whole bunch.  He's drooling a ton.  And he seems to find vibrating toys really interesting right now; we have a busy bee therapy toy and he tries to fit the whole foot of the thing in there despite the fact that it's too big to get in his mouth.  Normally he doesn't want it anywhere near his face, but at the moment he can't get enough of it. 

Of course the vibration makes his nose itch terribly, so he has a routine.  He'll bite down on the bee for as long as he can stand, and then he jerks his head away and scratches his nose for a couple of seconds.  Then he lunges for the bee again.  He'll do this for upwards of thirty minutes at a time-- it's pretty cute. 

I might try and get him a vibrating teething toy to chew on since it seems to make him feel better.  He doesn't seem to be in a whole lot of discomfort yet from the molars, but the kid's pain tolerance is through the roof so sometimes it's hard to tell. 

Oh, and did I mention that he's growing like a week at the same time?  When he stands with my help his head is up to my waist! 

~Jess

In Which Connor Gets A Samson Haircut

So once again it was time for Connor to get a haircut, and thus instantly grow about three inches taller and age approximately 278 years. 

My child, for those of you who don't know, is kind of like the biblical Samson except instead of storing all of his strength in his hair he stores all of his babyhood.  Whenever you chop off his hair, all of that babyhood leaks out and he instantly turns into a much older boy.  Then I spend the rest of the day looking for a brick of the appropriate size to tie to his head so he'll slow down and stay my little boy a while longer-- preferably forever. 

Can you believe he'll be five in April?  I wouldn't believe it myself except we cut his hair today and so now he looks like he's at least two hundred and ten. 

He might have inherited this trait from me, because any time Connor gets a haircut I feel about ten years older too.  This is because I spend the entire haircut watching whichever poor stylist we've tricked into trying this time narrowly miss chopping off my son's ears on at least six or seven occasions.  Connor sits in my lap and the poor woman (or this time, man) has to dance around us, trying to cut the little guy's hair as evenly as possibly while Connor whips his head back and forth until I am forced to put my son in a headlock to prevent stab wounds. 

Luckily Connor thinks headlocks are funny.

Jeremy always offers to get the clippers and simply buzz all the little guy's hair off, but I don't want to do that because Connor has gorgeous hair-- the kind of natural platinum blond that many, many girls would probably kill somebody for.  Also thanks to his soft spots closing early he has kind of a wonky shaped head.  So I always tell Jer know and take him to a professional instead. 

Given the challenge we present I am always amazed at just how well Connor's haircuts turn out, and also by the fact that no one is bleeding at the end of them.  We give the poor hair stylist a big tip-- trust me when I say that they've earned it. 

I have absolutely no idea what we're going to do once Connor is too big to sit on my lap, but I guess we'll figure that out later!  Hopefully that's a few years (and hair cuts) away.

~Jess

In Which Connor Gets A New Wardrobe

Today I discovered why I've had to do laundry so often for Connor in recent weeks.

The little guy has been growing like a weed, and he's finally on the cusp of needing 4T clothes, which is a landmark event in this household.  This is the first time that Connor has worn the same size clothes that other kids his age are wearing.  Ever. 

I'm still kind of in shock about it, actually. 

Since Connor is moving up a size, I decided it was time to clean his closet out, as he still had a lot of 18-24 month clothes in there.  I pulled out everything that wasn't a 3T or 4T, and suddenly my weird laundry schedule made a heck of a lot more sense.  By the time I was finished a mountain of discarded clothing lay on the bed, waiting to go to Goodwill.  The clothing I didn't cull from the closet huddled in a pathetic little clump in the center of the closet, surrounded by a sea of empty hangers. 

Connor had a grand total of three pairs of pants in his current size-- counting the ones he was wearing.  He had eight short sleeve shirts, four light-weight long sleeve shirts, and no winter gear other than the single sweater and jacket I'd purchased him just before school started.  And keep in mind the kid normally drools a lot, so we go through two or three shirt changes on a good day.  With the crisp weather we've had recently, he's been in his long sleeve gear.  No wonder I kept having to throw stuff in the washing machine!  All of the clothing with the exception of the jacket, sweater, one short sleeve shirt and one pair of jeans (he's wearing the shirt and jeans in this picture) was 3T, so at the rate the kid's been growing he was going to be naked in about three weeks. 

Laundry is my least favorite chore.  This problem had to be corrected immediately.

So after Connor came home from school and had his "zen time" (what we call nap time now that he doesn't use it to nap) Jeremy and I loaded him in the car and took off for the mall to buy the little guy a new wardrobe.  All the Back-To-School sales were going on, so it was a good time to stock up.  We ended up walking out with two pairs of long pants, a pair of sweats, four long sleeve shirts and a winter hat.  I still need to pick up a sweater or two for him, but I'll go to a thrift store for that as sweaters in the stores tend to be fifteen to twenty bucks even with the sales, and that's the equivalent of about forty bucks a yard for fabric.  I can't justify paying that kind of money for a sweater that's going to be covered in Pediasure on a regular basis, even if it does have a cool robot or dinosaur embroidered on it or something.

At any rate, everybody walked out happy: Connor because he got a shirt with dinosaurs on it, Jeremy because the shopping trip was extremely short, and me because I will be able to quit doing laundry for Connor every single day, like I've been doing for the past few weeks. 

I'd say that's a pretty successful outing!

~Jess

In Which Connor is a Fashion Critic, And Growing Like a Weed

Connor got to wear the first shorts of the year today.  He wasn't quite sure what to make of them; I'm not sure he remembered wearing shorts from last year-- or maybe it was just that he has more vocabulary to ask questions now.  "Pants?" he kept signing.  "No pants?"  I think he was a little confused about going to school dressed in them; maybe he thought he was in pajamas.  Oh well; he got used to them pretty quickly once he figured out that making loud whining noises wasn't going to get him any pants, though periodically he would remind me that I was committing a violation of his personal dress code.  "Connor no pants.  Sad."

Yes, Connor.  Tragic.

He was much more enamored of his spiffy new tie-dye T-shirt, which he made with some help at school.  Isn't he adorable?  He loved the bright colors and he kept staring down at himself and looking at himself in the mirror.  Clearly he approved of the addition to his wardrobe, even if it doesn't have long sleeves.  Oh well; one can't have everything.

Who knows how long it will fit, though; the kid is growing like a weed!  At his neurology appointment on Friday (where they upped his medication again, by the way) he weighed in at 31.2 pounds; which puts him officially on the growth chart!  This is a first for him; he's never actually made it up to the chart before-- usually he's somewhere way below the bottom of the curve.  He is now in the 10th percentile for weight/age.  Awesome!  Unfortunately I didn't catch what his length was; I'll have to measure him tomorrow and see.  Our biggest concern is keeping him proportional; I could care less how small or large he is so long as he's an appropriate weight for his height.  I secretly hope he doesn't shoot up too quickly, though.  In some ways him being smaller would be a lot easier for us as he gets older because he'd be easier to carry, but we'll just have to see how he grows.  If he ends up being six feet tall than I won't have to go to the gym any more because I'll have my very own home workout.  I'll have arms of steel!

Grow Connor grow!

~Jess

One Of These Things Is Not Like The Other

Connor's weight and height, at least from our home measurements, continue to improve. He's now solidly in the 40% on his length-for-weight percentiles which I think is just about perfect. Height predictors (though I'm iffy on how accurate those things are) are now saying he'll hit 5'3" at adulthood as opposed to the 4'10" the doctor told us at age two. He's really shot up like a weed! I'm so, so glad we made the decision to get the g-tube.

On a totally different topic-- I was helping get a little girl with a CI acclimated at a local daycare center this morning, and I had Connor with me. One of the other kids in the class asked about Connor's hearing aids.

"Connor has a little trouble hearing," I explained, "so he wears his hearing aids to make things louder and help him hear. Your new friend (the little girl I was there for) also has trouble hearing, and she has a cochlear implant to help her. Connor has trouble walking too, so he has a wheelchair to help him move. Some of the other kids in here have other things to help them, like that little boy over there, who has glasses to help him see."

"And you're his mommy?" she asked, pointing to Connor.

"Yep!"

"Oh!" exclaimed the little girl. She studied me closely for a minute. "Well, what's wrong with you? Why don't you have hearing aids on?"

Kind of a different perspective on things.

~Jess

Sleep

Last night Connor woke up at two in the morning and decided it was time to get up. He began yelling and singing and shouting "nananananana" as loud as he possibly could. Then he started kicking the wall of his crib. He wasn't upset-- just totally convinced that it was wake-up time. After checking to make sure that he was comfortable, that he didn't need to go potty, that his diaper didn't need changing and that his g-tube pump wasn't spraying formula everywhere, I turned around and went back to bed. Connor, since he doesn't have any way of getting out of the crib and playing on his own, went back to yelling and singing. For the next two hours. My poor upstairs neighbors.


So today he was pretty zombified (As was I. I can't sleep unless he's asleep too), and around four in the afternoon he actually fell asleep against my chest-- something he hasn't done in a long, long time. He used to sleep away the afternoon snuggled up against me while I worked at the computer, but now since he doesn't nap it never happens unless he's sick or stayed up too late. This of course guarantees he'll be up till all hours tonight. Oh well. My leg also goes to sleep a lot faster now when he does it, but it's still pretty sweet. It reminds me of just how big he's getting; he's not going to fit in my lap in a few more years. As it is he has to scrunch up and tuck his head under my collarbone already. Seems like it was just yesterday he was practically pocket size.



They grow up so fast.


~Jess

Grow Little Grow Worm, Grow!*

Connor's been doing some major growing around here!

As you all probably know, Connor is a really little guy. And when I say really little, I mean little as in "he fell off the bottom of the growth chart when he was two months old and hasn't been back since" little. Disregarding the whole heart-defects-and-missing-kidney-and-taking-blood-thinners-and-poor-muscle-control thing, I would be destined to suffer disappointment if I had dreams of him pursuing a professional basketball career. I mean, up until about three months ago, my cat outweighed him. Granted, Loki is a pretty big cat, but that's still kind of ridiculous.

At any rate, I'm not sure how it happened that I managed to give birth to a child who can literally sit around all day eating and still not gain any weight, whereas I can merely glance at a bowl of ice cream and it flings itself across space and gloms directly onto my hips. Connor has been this way since the very beginning. When the little guy was born, he weighed 5 lbs, 14 oz, and when we brought him home almost six weeks later, he weighed exactly 5 lbs, 8 oz. During his hospital stay he dipped as low as 5 pounds even. Granted, he was on a diet for three weeks of nothing but IV fluid and TPN Lipids, but he didn't ever catch up once he switched to more substantial fare; he wore 12 month clothing from the time he hit 18 months old until he was two and a half for goodness sake. As to why exactly he's so small: maybe a crazy metabolism or some issue with pulling nutrients out of his food-- who knows?

One of the big reasons we got the g-tube was that in the past few months while Connor was still gaining weight at his usual plodding rate, he'd sped up a bit on how quickly he was growing upward, so his length-for-weight proportion (the only growth chart he's ever been on barring his first two months of life) was slowly edging towards the ominous blank space below the 1st percentile line. I don't care how tall he is or how much he weighs, but I do want him to be proportionate. Not only did this imbalance make it impossible to shop for shirts (all the ones long enough for him made it look like we dressed him in brightly patterned cloth sacks) but he was starting to take on a bizarre appearance undressed as well-- his round pinchable cheeks and chubby legs and arms are part of his genetic condition, so he loses fat there last. Picture the torso of one of the kids in those brochures about starving children in Africa meshed with a Pillsbury Dough Boy head, arms, and legs. Yeesh.

At any rate, Connor's g-tube has allowed us to put him on a diet with an insane amount of calories for a three year old of his activity level without me having to spend every waking moment feeding him. It's taken a lot of the stress out of getting him to eat, too; I know that if he doesn't finish every meal it's okay, as we can make up the lost nutrition through the tube at night. He's on a 1300 calorie diet. A typical running, jumping, hyperactive three year old needs between 1000-1400 calories. A kid as sedentary as Connor? That's a pretty crazy amount of food. At any rate, now we're finally starting to see some results!

We drove down to our hospital for a weigh-in today, and Connor tipped the scales at exactly 25 pounds. That means that in the past 48 days he's gained a pound and a half! Now that might not sound like much, but keep in mind that his typical rate for the last year or so has been only 5 grams a day. There are a little over 453 grams in a pound. That means that in the past, it would have taken him about four and a half months to gain the same amount of weight! This represents a huge increase in his rate of growth. He's also grown an inch and a half in that same amount of time, and is measuring a still-tiny-but-more-respectable 2 ft, 10 inches tall. He's pushed his length-for-weight percentile back up from the 4th percentile to somewhere around the 12th percentile, and he's now hovering just below the bottom line on the weight-for-age chart. In the next couple of weeks, he might just make it back up on those lines for the first time in well over two years.

I'm so relieved that his crazy high calorie, high fat diet is paying off! Now we just have make sure we don't overshoot and turn him into a butterball.

Grow Connor Grow!

~Jess

*To the maybe two other people out there reading this who are also Lilla Cayley Robinson or Mills Brothers fans or at least know who they are: my apologies for the bad title. I couldn't resist. Also, I would like to state for the record that Connor has turned on both the AC and the DC. Um, yeah. Sorry.

Grow Connor Grow!

All right, I'm pretty sure the kiddo is going through a growth spurt. I should have recognized the signs-- he's had a couple before, and they usually start with him waking up in the middle of the night convinced he's starving.

My child, who it's usually a struggle to get any food into at all, had somewhere around 1800 calories today. This is a ridiculous amount of food for a kid his size, but since he's not exactly in danger of becoming overweight any time soon, I rolled with it. Any little extra fat pads we can squeeze onto those skinny thighs in between the times that he goes on hunger strike are great. I mean, the kid is almost three and he weighs a grand total of 22 pounds. I think sumo wrestler is not going to be a good career choice for him.

Other than being ravenous, he was pretty quiet and rather grumpy most of the day-- which was pretty much the mood I was in too. I like my sleep. He lasted longer than I thought he would, though-- the grand meltdown in which Connor announced that he had Had Enough occurred at about 4:30 in the afternoon, after he'd fallen asleep in the car and I had to wake him up to take him inside. I fed him his dinner and he was conked out by 5:30. Bliss.

I then took a ridiculously long bubble bath, had a cup of tea, read for a little bit, and turned out the light at the pitifully early hour of 7:30, only to be awakened at 8:30 by what sounded like an air raid siren going off in Connor's room. Connor was Not Pleased, and he was using every square inch of his lung capacity to tell me so.

Guess what he wanted?

~Jess