In Which Connor Makes A Couple Impressions

Today Connor finally had his appointment with the audiologist to get a new earmold made for his left hearing aid.  He's been without hearing aids for over a month now, and this was the earliest that they could fit us in, which I thought was a little strange considering that normally they consider a kid not having access to sound to be somewhat of an emergency.  It turns out that the woman who booked it for some reason thought that Connor was just outgrowing his earmolds, which is not nearly as urgent a problem.  So the audiologist told me if he does it again to just ask for her directly so that we make sure he gets in quickly.  This is actually only the second time he's lost an earmold in the four years he's been wearing his hearing aids, so hopefully it won't come up any time soon!

As it turned out, Connor's one remaining earmold was getting a bit small anyway, so it was decided to just get him a new set entirely.  This involves making a mold of Connor's ear canal, which is not really his favorite thing in the world.  He's got a piece of bone in his right ear canal that's much closer to the surface than is typical, and so the pressure of the ear impression material used to be extremely painful for him.  Luckily as he's gotten older it no longer seems to bother him nearly as much; either he has a little more padding between the bone and the skin now or else the pressure of the earmold material isn't as bad since it has more space to expand in.  So while he still doesn't particularly enjoy it, at least I no longer feel like I'm torturing my kid by making him go through the experience.

While a lot of people tend to go with the clear or beige earmolds so they don't stand out as much, Connor doesn't really care if they stand out (and since his hearing aids are bright orange it would be kind of the equivalent of ordering a diet coke with a double cheeseburger).  There's a more practical reason for getting brightly colored earmolds in our house anyway; the cats have a bad habit of thinking Connor's hearing aids are great to play with if I make the mistake of taking them off him and leaving them somewhere they can get to, and so having something that is easy to spot on our laminate floors is a big plus.

Connor narrowed the wide selection of colors down to two choices and then refused to pick between them.  So I chose for him.  This time he's getting a color called "blue cat's eye," which basically looks like one of those neon blue swirly marbles.  It's pretty neat.

It will take another three weeks for his hearing aids to come in, but at least he'll have them before school starts up again.  After going two months without sound, it may take him a little while to get used to wearing them again; hopefully we won't have to resort to the Sad Hat.  It probably wouldn't fit him anymore anyway!

~Jess

In Which Connor Has Some Tests

Well, that was unexpected.

Connor slept for a grand total of twenty-two and a half hours (with just a few short breaks in which I tried unsuccessfully to wake him up)-- from 7:00 yesterday morning until 5:30 this morning, when I woke him up to get him ready for our brain MRI and sedated hearing test appointment.  Now that's a long nap! 

Not only that, but he actually went to bed on time tonight and is currently peacefully asleep.  Trust me when I say that I am extremely excited about this, and I'm trying to blog as quickly as I can so that I can take advantage of being able to go to sleep before the wee hours of the morning. 

Connor's tests both went smoothly, though to be honest I wasn't sure if they were actually going to do them at all because he's still pretty congested from his cold of earlier in the week.  They listened to his lungs and after a little debate decided that he'd be all right.  So they got an IV (in a scalp vein, which looks kind of bad but is actually a pretty good place for him to have one since he's much less likely to mess with it) and administered a drug called Propofol to make him fall asleep.  He's been given Propofol in the past for procedures where they need to make sure he remains really still and it's a great drug for him because it puts him out easily and comfortably and he recovers quickly and well from it (it also happens to be the drug that killed Michael Jackson, but that's kind of irrelevant).  The only issue he has with it is that he burns through it really quickly due to his crazy metabolism.  The anesthesiologist said he had to give Connor way more than he was expecting to keep him under. 

Also Connor kept coughing during the MRI so it took them more time to get pictures than they expected, since every time he coughed he of course moved.  But otherwise things went really well.

So we don't have the results on the MRI yet, but we heard the results of the hearing test right away, and right now things look stable!  Connor actually tested like his hearing had gotten slightly better, which the audiologist said was probably due to a margin of error.  At any rate, it was great news to hear that he hasn't experienced any more hearing loss at this time, and I'm really hoping that this continues to be the trend in future years! 

Overall the day went pretty well!  And now I'm off to sleep.  Whoo hoo!

~Jess

In Which I Talk About Something Other Than The House

I got so involved in my ramp planning yesterday (Now I'm thinking about living wall panels-- wouldn't that be cool on the side of a ramp wall? Totally impractical and hard to maintain, so I probably wouldn't actually do it, but very cool.) that I forgot to give you the update on Jer! Sorry about that.

There's Jeremy hanging out with our son, No-Pants boy, yesterday morning. Connor will wear a shirt to bed but he draws the line at pants. He's signing "Daddy" in this picture-- isn't he cute?

So Jer went in for a hearing test yesterday, because he's been having some trouble with loud sounds setting off a "static" sort of noise in his ear; it's rather uncomfortable and certainly distracting. They tested his hearing and he doesn't have any hearing loss, which is good. Basically they said that it's likely the concussion wave from the blast injured his middle ear and there's not really anything they can do to fix the problem, but it should get better over time. In the meantime I'm going to have to figure out how to moderate my voice a little better-- I tend to get really loud when I'm excited about a topic, and with the whole house buying thing I've been excited a lot recently, so now I get "shushed" a whole bunch. Oh well.

Jer also went down to the casting room, where they removed a staple in his graft that had been accidentally left in and also pulled out the wire sticking out of the top of his foot. This was the wire holding the navicular bone in place while it healed, and it's been a little over two months since it was put in. It stuck out about 3/4 in out of the surface of his foot, and was becoming increasingly uncomfortable. He was having a difficult time doing all of his physical therapy exercises because the wire went through either a muscle or tendon involved with the movement of his big toe, so it made his range-of-motion exercises kind of painful. Also whenever he had his air cast on the cast was essentially sitting on the wire and pressing it down into his foot. Ow.

Jeremy was a little bit nervous about them taking the wire out, and I can't say that I blame him. They don't use any anesthesia or anything, and while they tell you it won't hurt at all the fact that they're pulling 3 in long wire out of a bone in your foot makes you tend to think they're lying. Additionally exciting was the fact that it was a resident who obviously hadn't done this before taking it out of Jer's foot, so we got to hear the instructions. "You just twist it around like a corkscrew and yank it out," the orthopedic surgeon told him. Whee.

But as it turns out, it really doesn't hurt-- the guy took a hold of the wire, twisted it around for a second, and then pulled it out, and Jer didn't feel a thing. Weird. He now has a band aid over a rather large hole in his foot, and he's much more comfortable both moving his toe and wearing the cast. He's also a little less anxious about getting all the wires sticking out of the sides of his feet pulled, which they'll be doing on Wednesday. I think he's rather looking forward to it-- those all push against the cast too.

Jer can feel sensation just about everywhere except for a couple spots on the side and top of his left foot and his graft area, where the skin is totally numb. This is great because it means that for the most part the nerves are all working correctly! I was under the impression that he'd get sensation back in the graft area eventually, but Jer's PT said it was likely he never will feel anything there again because he lost so much tissue and the graft is so large.

We'll just have to see; the body is a pretty amazing thing!

~Jess

Appointments

No seizures today, thank goodness. Thanks everybody, for the prayers and well-wishes. Hopefully Connor stays seizure free!

The little guy had his renal ultrasound today. I got to watch up on the screen. I've seen a good portion of the insides of my son through ultrasounds, CT scans, MRIs, etc, and while these things have become pretty routine, every once in a while I'm struck by the sheer beauty of the human body. The blood flow through a kidney looks like the spreading branches of a tree. It's pretty neat to watch.

Anyway, we won't know the results of that scan until the doctors take a look at it. Thus far we've determined that the kidney hasn't, I don't know, exploded or something. This is good.

One other piece of good news-- I got a call from the hospital this afternoon. They had a cancellation in their ABR schedule, and since I'd put Connor on the cancellation waiting list, our ABR has been bumped up from June 30 to tomorrow morning! We should have some answers about whether or not Connor's hearing has deteriorated further by the end of that test. I must admit I'm a little bit paranoid about putting him under sedation while he's having his seizures, but if he's going to have them anyway, he might as well have them in the hospital. They just barely put him under for the ABRs-- it takes about ten minutes total to wear off, so the risk isn't very great, and if he does have one, the anesthesiologist is right there, and I'll let someone else do the rescue breathing for a change.

~Jess

Can You Hear Me Now?

Today Connor had his behavioral hearing exam. We drove there with a load of stuff for the apartment in the car-- hence the giant Elmo of Doom lurking in the trunk and warning off potential tailgaters with his huge crazed eyes.

Anyway, the hearing exam did not go exactly as planned. Here's what's supposed to happen at one of these things:

The audiologist puts little plugs in Connor's ears that are attached to a sound system. An assistant has a neutral, fairly unexciting toy (in this case a duck sock puppet) that she uses to keep Connor's attention relatively up front. The audiologist uses a tone or calls Connor's name and it sounds in one of his ears. Then the assistant with the duck puppet leads Connor's view point towards the direction the sound is coming from. He turns towards the side that the sound came from, and a really exciting toy (I think it was a Pluto surrounded by Christmas lights who bangs together cymbals) lights up in response, rewarding the behavior. After associating turning towards the sound with the interesting Pluto toy, they run the test, making the tone or voice a little softer each time, and that little Pluto goes crazy every time he turns towards the sound. When Connor stops turning towards the sound, they know they've reached the threshold that he can't hear below.

Here's what actually happens at one of Connor's exams:

The audiologist puts little plugs in Connor's ears, which Connor immediately pulls out. The audiologist puts the plugs back in his ears, and I corral Connor's arms. Connor focuses for the next five minutes on getting his hands close enough to his ears to yank the plugs out again, ignoring the assistant and her boring duck sock puppet. He finally gives up and, in protest, stares at the ceiling, the walls, and anywhere he can think to look except for the boring sock puppet. The assistant finally gets out a different, more colorful and exciting toy, which he deigns to look at. The sound goes off, she attempts to lead his view towards Pluto, and he goes back to staring at the ceiling. I physically turn his head towards Pluto, who does his little dance. Connor is fascinated. He then spends the next ten minutes staring at Pluto and signing more, completely ignoring the assistant, the audiologist's voice, and my repeated attempts to get him back to mid-line. Finally convinced that Pluto will not perform on command, he goes back to staring at the ceiling and attempting to remove the plugs from his ears. Then he announces that he has to go potty.

We throw in the towel and schedule him for a sedated ABR. At the end of June.

Sigh.


~Jess