In Which Connor Puts On The Ritz

I say, old chap-- would you care for a spot of tea? 
Pip pip and all that!

Happy Halloween, everyone!

Connor dressed up as a dapper gentleman for Halloween this year.  Mostly he just wanted to wear his top hat.  Let me tell you that painting a handlebar mustache on an extremely ticklish small child in liquid eyeliner is not as easy as it sounds, but after a few missteps it turned out pretty well. 

We didn't go trick-or-treating this year though; we stayed home and passed out candy.  It was drizzling outside, and since Connor doesn't eat candy I didn't want to take him out to be wet and miserable just because it was what all the other kids were doing.  So he held the candy bowl and helped pass out the candy, which he seemed to enjoy just as much.  He didn't stay awake very long though; he started drooping around seven in the evening and was out shortly thereafter. 

We had quite a few cute kids come through the neighborhood, and I don't have very much candy left over-- which is good since we all know who's going to eat the lion's share of what's leftover.  I make a point of only buying candy brands that I like, because Jer's not a big one for candy and Connor's not eating it! 

Anyway, it was still a good night even with the rain, and Connor didn't overheat in his outfit or anything this year.  Hooray!

In Which Connor Gets A Lift

Connor has a newly installed roller coaster in his room!

While Connor was at school today a very pleasant man from the pharmacy we order most of our equipment from showed up sopping wet (it was pouring outside) at our door with a ton of large interesting looking boxes.  Connor's new rolling toilet chair and his lift had both arrived!  He and I set the lift up in Connor's room and he showed me how to work it. 

Connor is about forty pounds of squirmy, wiggly kid now, and while I'm not to the point yet where I'm having a ton of trouble lifting him I know that day is rapidly coming, as he's certainly not getting any lighter.  He doesn't help or hold on in any way when you pick him up, and he has a tendency to try and launch himself backwards on occasion to make things exciting.  I figure it's a really good idea to have measures in place before lifting him really starts taking a toll on my back; that way I will be used to using it by the time he gets to a size where it's absolutely essential.  I'd like to save my back for times when we're out in public areas and I can't use a lift rather than straining it because I'm lifting him at home all the time.

So I know you all don't really care about why we got the lift now rather than waiting.  What you are all really dying to know is how much it can lift, and how long the pharmacy guy had been gone before I tried carting myself around in it.  The answers to those questions are: 440 pounds and about five minutes.  The sling is actually pretty comfortable, though your butt sticks out through a hole in the bottom so it feels kind of weird. 

Connor's still not quite sure what to make of the contraption; we tried it out at bedtime and he seemed to be okay with it, but he did keep asking us what the heck it was.  I'm sure he'll get used to it quickly.  Now I just have to remember that it's there and not walk into the pole at three in the morning when I go in to check on him during the weekend. 

Hooray for lifts!

~Jess

In Which Connor Feels Better And We Have A Pajama Day

I'm happy to say that we had a quiet, uneventful day today.  Connor stayed home from school and I spent the day talking with various doctors and triage nurses about Saturday and watching him like a hawk.  We didn't even get out of our pajamas until well in the afternoon.

I'm still waiting on final word from Connor's neurologist, but for now it looks like we'll keep the medication change made this weekend as is and see how he does from there.  I'll be checking Connor's stomach contents for blood twice a day for the next few weeks to make sure that the bleeding isn't a reoccurring issue.  I'm so glad we have the g-tube; it makes keeping tabs on that sort of thing so much easier.  If it shows up again I'm supposed to take him in immediately so they can try and figure out the source of the problem.  Internal bleeding isn't something you really want to mess around with.

I'll be taking him back to school tomorrow; he's regained the motion in his left hand and seems to be back to his usual self.  I'm so happy that the seizure didn't seem to have any lasting effects on him, and I'm hoping I won't ever see one that long or violent again.

So hopefully tomorrow it will be business as usual in our house.  No more excitement for us, thank you very much!

~Jess

In Which Connor Meets More Firefighters And Takes An Ambulance Ride

Short blog tonight-- I'm exhausted.  Instead of giving my speech last night, I was in the local emergency room until the wee hours of the morning.  That afternoon as I was literally walking out the door, Connor's respite care nurse called me back because Connor was having a seizure. 

And he continued having a seizure for the next forty-five minutes.

Thankfully he kept breathing through the whole thing or I'd probably be writing a very different blog post.  I gave him the Diastat at five minutes in, and at around fifteen minutes in the EMTs gave him a dose of Valium.  Neither stopped the seizure.  It finally stopped on its own well after we got to the hospital. 

It was one of the violent jerking variety, and I'm pretty sure he was aware during the whole thing.  I think it scared him rather badly, which is completely understandable-- it had the same effect on me.  The doctors suspect it might have happened because of the reduction in seizure medication a week ago.  They went ahead and raised the dosage of one of his other seizure drugs to try and curb the problem. 

Amazingly, five minutes after the seizure was over Connor was signing that he didn't want to be there and was ready to go-- the seizure and the massive dose of sedatives he had on board didn't seem to slow him down much.  His left hand was paralyzed for a while, but it slowly started getting some function back.  The doctor was starting to talk about discharging him for the night and letting us go until Monday, when we'd go to Connor's primary care manager, when the little guy threw up a brown, chunky substance that ended up being blood.  Fantastic.

Luckily his complete blood count still looked good so they didn't think he was massively hemorrhaging or anything, and the blood didn't look fresh.  However, it was pretty worrisome to see, though the problem didn't seem to be urgent.  I'm pretty positive that Connor didn't bite the inside of his mouth or his tongue while seizing because we didn't see any blood coming out of his mouth during the seizure, so it's possible that he has some irritated patches in his throat from stomach acid, an ulcer, or even just that his g-tube got yanked on at some point during the transport and caused a bit of a tear his stomach lining.  At any rate, we're checking his stomach contents twice a day to make sure we don't see any more blood, and the little guy will be heading into the doctor's office on Monday to see whether or not Connor needs a scope done to figure out the source of the problem.  Whee.

So that was not, perhaps the best day ever.  We got out of the hospital at Early 'O Clock, and today for the most part we spent a very quiet time at home.  Connor slept for most of it, and he's out for the count now.  Other than the hand issue and the whole internal bleeding thing, he seems to have suffered no ill effects from his prolonged epileptic state, which is a real relief.  It was not, however, an experience I'd care to have again. 

Ever.

~Jess

In Which We Head To The Doctor

The area around Connor's g-tube was really red and sore today, and the antibiotic ointment we've been putting on it just doesn't seem to be doing the trick.  So I made him an appointment at the doctor's office this afternoon to take him in and get a culture done to check for infection. 

While we were there, I went ahead and got my flu shot and also a Hep A and Hep B vaccination, which is recommended for those who travel to Thailand.  They'd also like me to get a typhoid vaccine, but the doctor's office is out of it right now.  My arm is pretty sore right now-- I think with the second needle they hit a nerve or something because my arm started spasming, which was pretty weird to watch.

Connor hasn't had his flu shot yet, but we didn't want to get it today because if he started running a fever afterwards we wouldn't be sure if it was from the shot or the possible infection.  On Monday I should hear back from his doctor about whether or not the little guy just has an irritated g-tube site or if there really is something else going on there.  Once we know for sure what's going on there I'll take him back to get one so we can avoid the bug.  The fewer illnesses he gets this winter, the better!

~Jess

In Which Connor Gets Riled And We're Excited About It

Connor wasn't feeling well today; he threw up at school and again on the way home, so I canceled his physical therapy and took him home.  I suspect he might have a yeast infection starting around his g-tube; it's been red for a while and the over-the-counter antibiotics don't seem to be helping.  So I'll be calling the doctor tomorrow morning to see if I can get him in. 

For the most part, Connor has been doing wonderfully in recent days.  As we continue to go down on his medication he seems to be slowly waking up.  A couple of days ago Jeremy sang him his usual goodnight song, and Connor requested another song.  When Jer told him he'd get another song tomorrow he went into a full-blown pouting session, told him that he was "sad" and once again demanded more music.  Jer told him again that he'd get another song tomorrow, and he actually got mad and starting arguing with his daddy in sign.  "No!  Want Daddy music!" 

Jer and I were delighted.

I know it sounds strange that we'd be happy about our kid being so obstinate over something, but here's the deal: Connor doesn't usually get that worked up about anything-- certainly not enough to pout or argue about it.  He kind of embodies the Thai concept of ไม่เป็นไร, or "mai bpen rai," which literally translates to "no is nothing."  A greatly simplified explanation would be that it means to go with the flow and not let anything bother you.  While this is great in theory, Connor takes it a bit too far; it's extremely difficult to motivate him to work for anything because if a toy he wants is just out of reach or he has to do something even slightly difficult to get what he wants, he loses all interest. 

So it's great to see him really engaging with the world enough to get angry and argue when something he wants isn't happening.  And he's answering questions again rather than just ignoring me when I'm talking to him; through a series of yes/no questions today he was able to tell me that his g-tube site was itchy and sore.  Being able to give me that kind of information about how he's feeling is so amazing and wonderful because (as long as I can figure out which questions to ask) he can let me know what's wrong so we don't get into a situation like we did last winter.

And I love finding out more about what's going on inside that little corn-silk covered head of his.  He's been very carefully puckering and giving me little kisses lately, which absolutely melts my heart.  It's first new skill he's picked up in a long time, and it's something I never expected would happen.  The first few times I wasn't sure if it was deliberate or not, but now I can get kisses on request-- provided he's not ticked at me about something!  I think it's a pretty fantastic new skill to have. 

That's my boy!

~Jess

In Which I Turn On The Waterworks For A Good Cause

Today after I dropped Connor off at school I grabbed my lap top and writing notebook and headed down to one of the local coffee shops to get some work done.  I'm giving a speech on Saturday for a fundraiser being held by Children's Therapy Center-- the fantastic organization that did Connor's therapy for a number of years-- and I needed to transcribe my speech to a Word document so I could send it to the organizer of the event. 

I am not what you would call a particularly gifted public speaker; actually I have terrible stage fright and really dislike being in the spotlight.  But the topic I'm speaking on-- Connor-- is one I'm an expert in.  Actually (as the 1300+ blog posts here testify) it's pretty difficult to get me to shut up about the kid.  I had to cut large portions of my first draft when I read it out loud and discovered it was nearly three times longer than my allotted speaking time.  Whoops. 

So at least I won't run out of things to say.  The next problem I have to tackle is that I seem to be completely unable to read the thing out loud without weeping all over the place.  I can make all right until about halfway through when I start talking about all of the "firsts" Connor had at CTC-- first time sitting on his own, first time standing, etc. and then I lose it.  Heck, I can't even type the thing without crying; I was sitting in the coffee shop this morning clattering away on the keyboard with tears streaming down my face.  The other customers gave my table a wide berth.

So I'm not entirely sure how successful this whole speech thing is going to be.  But I'll do my best and we'll see how it goes.  If nothing else I'm looking forward to the chance to meet up with my friends at CTC and my lovely ladies from my roller derby league the Dockyard Derby Dames, who will be helping out at the event because they are awesome.  If you're in the local area, you should come!  If nothing else, watching me attempt to give an actual speech without freaking out and/or leaking all over the stage should be highly amusing.  And hey, it's a great cause!

~Jess