In Which Connor Straightens Out

Today I went to the dentist, which was every bit as fun as it sounds.  This time I was in the same room where I got the phone call about Jer three years ago, which was a little surreal but not really uncomfortable. 

I'm happy to say that while I have terrible eyes, I have great teeth; I've never had any work done whatsoever on them other than the occasional cleaning, and they seem to hold up just fine.  I am mystified as to how this works, considering I eat a ridiculous amount of chocolate, but hey-- I'm not complaining!  At any rate, other than being told I need to floss more (something I've heard at every single dentist appointment I've ever had) things went swimmingly.

In other news, we brought home Connor's knee extension braces today!  They are Wheaton Pediatric Knee Immobilizers, for those who are interested in the technical side of things.  Connor will be wearing these during his standing time, and working up to wearing them during the night.  They should not only help with his stability, but also help stretch out his hamstrings and to get a better stretch of his hip flexors and thigh muscles. 

He's been using them at his weekly physical therapy for a while now, so hopefully it won't take him too long to get the hang of them at home.  We're hoping that since they aren't too bulky he will be able to wear them for quite a while before he ends up in danger of overheating.  He's really cute when he stands up in them because all he wants to do is stare down at his legs with this really puzzled look on his face.  I figure he's thinking "why aren't my hinges bending?"  

While I was going through the little guy's stretching today, I noticed something really exciting.  Connor's clonus-- the involuntary jerking motion that is a big indicator of neurological damage that happens when you push up on his feet-- is almost entirely gone!  Last year this progressed to the point that you literally could not flex Connor's feet at all without setting off the muscle spasms, so this to my mind points to some major improvement in his overall neurological state.  He goes in to the neurologist on Thursday, so I'll be sure to talk to him about it then and see what he has to say about it.  I'm hopeful though that this is a sign that the serious skill regression across the board we saw with all of last year's seizures might potentially be at least partially reversible. 

It just makes me so happy that he's doing so well!

~Jess

In Which Connor Needs Another Part Recall

Well that was a fun doctor's appointment.

I called to make an appointment to get Connor's school paperwork filled out and also because I figured I'd better get his knee checked out.  I thought they'd get me an appointment some time in the next couple of weeks, but when the woman making the appointment heard about Connor's knee she kind of freaked out and insisted we get an appointment for tonight.  So off we went.

We ended up having to call on the way there and reschedule for a later appointment time because traffic was so bad, but we made it to our second appointment and were whisked off to see the pediatrician.  He asked us to leave the school paperwork at the desk, and then took a look at Connor's left knee.  He actually visibly cringed when the leg popped out. 

"Whoa," he said.  "His knee is really messed up."

This is always what you want to hear coming out of a pediatrician's mouth.

He said that it looks like Connor's experiencing "tibial subluxation," which essentially means "shin bone partially dislocates," and that it is both "passive and active," meaning "the doctor can make it happen and Connor can do it to himself."  He said that it should hurt like a son of a gun every time Connor does it, too, so either the kid has some really weird nerves in there or an insanely high pain tolerance.  This is why I didn't think it was that big a deal-- the kid pops it out twenty or more times a day and doesn't even flinch.  I think that thanks to Connor's seizures my bar for what consists of an emergency is set so darn high now that I'm much less likely than the average parent to deem something a big problem if it doesn't involve bleeding, screaming or imminent death.  Cue the Mommy guilt trip.

So we have a referral to the orthopedist, who I'm supposed to call on Sunday to get an appointment.  The pediatrician refused to speculate on what exactly Connor would potentially need because it's "not his field," but he did say that at the very least he would expect the little guy to need a brace, or possibly some other more invasive measure because his knee "really has some crazy stuff going on in there."  If he ends up getting a knee brace (or two, though his right shin seems to stay where it should so far), then combined with his ankle-foot orthotics and back brace it's going to look like this kid is armor plated.  Of course, I'd much rather do a brace than surgery any day, so if a brace is what we need, sign us up.  Maybe we can get one with flame-decorated velcro like his other braces so it'll look like he has a matching set.  We can give him a superhero name to go with it.  Orthotic Wonder Boy has a nice ring to it.  Or maybe Semi-Flexible Plastic Kid. 

Glorious.


~Jess