In Which Connor Cuts Back

We took Connor in for his annual nutritionist appointment today, and confirmed that he is currently slightly more than the ideal body weight for his height.  Even though he's been on the same diet since he was two, he's not growing as quickly anymore and because he doesn't get around on his own at all he doesn't burn too many calories during the day.  So we're cutting his intake by about half a can of pediasure to slow his weight gain, and we'll check back in after a month to see how he's doing.  We don't really want him to lose any weight; we just want his height to catch up.

We're not worried about how he looks, of course-- he would look just as adorable as he does now if he was a little butterball-- but because he has a heart condition and also rather unstable joints, we want him to be as healthy as possible.  Not to mention that it will be better for my heart, back and joints.  I do a heck of a lot of lifting him up and down.

We got Connor up a little early to get him to his appointment, and as a result totally threw off his groove for the rest of the day.  He was tired and whiny, and then this afternoon he threw up all over the place, had a little seizure and then completely conked out and napped for about three hours.  Once he woke up, he seemed to be feeling much better, so he did his stander time and then hung out with his daddy for a bit.  Hopefully it was just the waking up early that really threw him off, and not that he's coming down with the same bug I've got.  I spent a good portion of the day today without much of a voice, and I'm definitely a bit worse for wear right now, though it hasn't completely wiped me out or anything.  He can sleep in tomorrow, so we'll see if that helps.

Hopefully it will be a better day for him!

~Jess

In Which Nothing Really Changes

Today was pretty much more of the same, only now we've added diarrhea to the mix.  You can imagine how thrilled this makes me.  Luckily he didn't throw up as much today, so it sort of balances out.  Sort of.  At least as far as the dehydration issue goes-- not as far as the mess.

He didn't have any seizures at all today though, which was a major improvement. 

I don't really have anything else to report; I spent most of today sitting with the little guy working on various sewing projects and listening to old episodes of This American Life. 

It wasn't terribly exciting.

~Jess

In Which We Have A Sort Of Mixed Day

Long day today, so this is going to be short.

The good: Connor had a nutrition appointment today, and his length-for-weight was smack dab in the 50th percentile!  This means he's growing up perfectly proportionate: just what we like to hear.  He's also on the growth chart now for weight!  His height is sliding by just under the 5th percentile.  We've seen a huge difference in his height and weight since he got the g-tube, and I don't regret doing it for a second! 

Also, we got word that our background checks from Texas came back, our homestudy was officially approved, and we're entered into the Thailand program!  This is extremely exciting and puts us one step closer to bringing Sylvie home.  Sylvie is now being officially matched with us at our adoption agency.  This means that while she's not matched to us yet in Thailand and could still potentially be adopted by someone else through another agency, reunited with her birth family, adopted by someone in Thailand, etc, we're the only family that will be working towards her with our agency.  Our adoption agency will be traveling to visit her orphanage this month, so hopefully we'll get some updated pictures, video and information about her soon, too!  Of course, I can't show any of ya'll the pictures or video as she's not officially ours yet, but trust me when I say that she is extremely cute.  We can't wait to see how much she's grown!

The bad: Connor had another seizure today.  This makes for number four in the past two weeks.  Not good.  The trend we're seeing is that the seizures are shorter (this one was only thirty seconds long) but coming much more frequently.  Connor has only been on his full dose of meds for five days now, so it's possible these are still breakthrough seizures.  We're going to call the neurologist in the morning and let them know what's been going on, though, as four seizures in thirteen days is kind of disturbing, and certainly doesn't help my stress levels any.

On the adoption front, the political unrest seen in Thailand might very well have slowed the process down even further.  It looks like we might be bringing Sylvie home closer to Fall or Winter of 2011, and even maybe as late as 2012.  That's kind of a bummer; especially since she's not getting any access to adaptive equipment (or any speech therapy) while she's there, and the longer she goes without hearing aids the less likely it will be that she'll be able to make use of her residual hearing.  We'd like to get her home the sooner the better!  This waiting thing is going to be relatively agonizing, I'm pretty sure.  Oh well: there's nothing we can do about it, so we might as well not worry about it and take it as it comes.

So like I said, a good-and-bad sort of day. 

~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.

Happenings

Connor's doing fine today-- he's back to his usual happy self, and spent a lot of time giggling and asking me to play peek-a-boo, so I guess he's feeling pretty chipper. We've got a neuro appointment set up for next week, and hopefully they'll be able to help us out, as I'm not thrilled about the recent seizure excitement.

We had two other appointments today-- in urology and nutrition. We'd gone in to the urology department for something fairly minor, but the urologist looked up Connor's medical history, saw he had only one kidney and a recent UTI, and completely freaked out. There was much arm waving and gnashing of teeth and wondering why the other doctors didn't get us an appointment the second they found out Connor had a UTI instead of letting us make one through the slow hospital system. We now have a call in for an appointment to do a renal ultrasound, in which they will check and see if there's any scarring or swelling or weird looking stuff on Connor's remaining kidney, and depending on how that goes other tests may be scheduled. Apparently having a UTI as a three year old with one kidney is rather more serious than I thought.

We walked to our nutrition appointment directly from the urology department. Our nutritionist decided to keep Connor on his current diet, though he's not gaining weight as fast as she'd like. He was putting on the pounds at the snail's pace of 5 grams a day, and now with the g-tube he's been promoted to sloth status at 8 grams a day. This might have been affected by the fact that for the first two weeks or so after the g-tube placement he didn't want to eat anything by mouth, so while he was still taking in calories, it wasn't quite the number of calories he would have been getting had he been eating and also getting food through the tube. Oh well. We'll go in for another weight check in a couple of weeks, and maybe we'll be booking it at a more respectable turtle pace by then.

Connor has a behavioral hearing test (probably a BOA) scheduled for tomorrow. I do not have high hopes for this test, as the last time they tried to test his hearing without using the ABR method he responded as profoundly deaf, when in fact he has a mild-moderate loss. We'll see how it goes-- maybe he'll play along this time. After his test we'll be headed over to Connor's new school district to drop off some paperwork, and then it's back to shuttling loads of our stuff over to the new apartment.

We heard back from the hospital about Connor's g-tube, which has to last us another month and has begun splitting at the intake end. They told us to duct tape it. This will go nicely with the Frankenstein-stitched other end.

~Jess

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