hanging out, hanging in

It's been kind of a long week.  Jonathan has missed three days of school as well as his Extend-a-Family program today.  I've spent a lot of time just hanging out on the couch with him, working on my laptop or reading while he watches DVD's or listens to music.  Thankfully he is feeling better and hasn't had any more seizures.  We've been around the block with this seizure thing long enough to know that just because he had one on Wednesday doesn't mean he'll have one again soon, so we aren't walking on eggs but just moving on as best we can.  He should be ready for school again on Monday; I know I will be!

At times like this it's a really good thing Jonathan likes repetition and sameness.  He's watched the Wiggles' "Big Red Boat" DVD about 20 times this week, and he's done his horse and puppy puzzles about 100 times.

Once again I have to say how thankful I am that I don't have to work away from home.  Being an online instructor lets me work anywhere, so if one of the kids is sick I can be available at home without having to miss work or make a lot of arrangements.  I know not everyone has this luxury, so I don't take it for granted.

I posted on Facebook on Wednesday about Jonathan's seizure, and more than 25 people responded with words of encouragement. Not only is that comforting, but when I'm feeling a bit tied-down the connectedness is really nice.

Rich has been awesome too.  On Wed. morning when Jonathan woke up with a bad cough and had to stay home, I was prepared to cancel my noon lunch date with a friend because Rich had to sleep after his Tues. night shift.  But he just said, "Don't cancel it; I'll just get up at 11:50 and take over."  He got up after about 3.5 hours of sleep so that I could go out.  Mind you, the fact that he didn't have to work the next night helped -- but still.  I sure appreciated it.  Thanks hon!

Trying-to-Remain-Positive Thursday

After Tuesday's hopeful post, it was discouraging to have a big setback yesterday.  Jonathan got up Wednesday morning with a bad cough, so we kept him home from school.  He was perky all morning, but as the day went on his cough got tighter and he seemed sicker.  We were just preparing for supper when Rich noticed he was just staring into space.  And it was the same as all his other seizures:  vacant stare, dilated pupils, rigid, twitchy body, clicking in his throat.  It lasted about 2 minutes and then he drifted into sleep.  Poor, poor Jonathan.  So disappointing after our appointment with Dr. M. and the decision to drop one of his meds.  We'll have to call her today; she'll likely recommend we restart the meds at the original dose.

Still, after going to bed in a miserable state, Jonathan woke in the night and marched into our bedroom and he was just the same old Jonathan, smiling and laughing and making all his usual comments.  We're thankful that these episodes, distressing as they are, don't seem to cause any damage to his brain -- when they are over, he's his old self again.

Stay tuned for (hopefully) some encouraging updates.

"Thankful Tuesday"

This logo comes from a blog I follow called Mama: Monk written by Micha Boyett:  every Tuesday she posts about things she's thankful for.

Today Jonathan had his regular follow-up appointment with Dr. MacDonald, a pediatric neurologist, and we left feeling thankful for a number of things; so I'm sharing them here in the spirit of Micha's theme:

- Jonathan has been seizure-free for more than 3 years.
- As a result, he now has to take only one medication rather than two.
- Dr. MacDonald thinks Jonathan's doing really well.
- She thinks we, as his parents, are saints.  That's total lunacy, of course, but hey, sometimes you have to be thankful for someone else's total lunacy.  :-)
- The waiting-room time was very short.
- We saw just Dr. M. rather than a resident.  I know, it's a teaching facility and the new doctors need training and experience, so we don't begrudge that.  But it's just so much quicker when we see Dr. M. only:  we don't have to re-explain everything, and we don't have to wait while the resident consults with her before she comes in.
- Jonathan needed blood work done as well.  Although this was an extra stop that we hadn't expected, he went cheerfully with us to the blood lab; the wait there was less than a minute; and he made very little complaint when they drew the blood.

So there's a lot to be thankful for today.

weaning

We are weaning Jonathan.  OK, since he's ten, that requires some explanation.  Jonathan has been on 2 seizure meds for a number of years:  a liquid, and a pill that we crush into the liquid.  He's been taking them both twice a day for a long time.  But now that he has gone 3 years without any seizures or related symptoms (YAY!!!), the pediatric neurologist is gradually weaning him off the pill that he's been taking.  So instead of one pill twice a day he is taking half a pill once a day; and when we see her next week she will likely stop that one altogether.

We never noticed any particular side effects to either of the drugs Jonathan's been taking, but since he's going off the one drug, his behaviour is definitely changing:  he is a LOT more hyper.  Jonathan has always been very social but now he yells at, and often runs after, people going by on bicycles; he calls out to people walking past even if they are a block away; he goes up to people at church (not just those he knows), taps them on the arm and says hi.  It's a little disconcerting -- it's also worrisome because chasing strangers can be dangerous for him and them, not to mention being socially inappropriate.  (It might be kind of cute when he's ten, but not when he's fifteen or twenty!).  I said to someone that when I walk to or from school with Jonathan I do "interval training":  I walk very slowly while he stops to look at garbage trucks or laundry hanging on clotheslines ... then I sprint to catch up with him when he decides to run after someone.  Again, this is one thing when he's ten, but before long I won't be able to catch him.

So we're dealing with a whole new phase here.  It just seems that when one thing improves, something else crops up that we have to deal with.  We're hoping that the doctor will have some insight into this; we're also hoping that when the medication is completely out of Jonathan's system, he'll "normalize" somewhat.  But for Jonathan, what's normal exactly?  There's a lot to figure out.

hide and seek

This morning I left home at 7:20 to walk to the church for worship team practice.  It was very quiet:  only the occasional dog-walker or jogger was out at that time.  As I walked past what looked like a typical student house on Johnson Street, I heard this small bumping sound.  I looked, and there, in between the curtain and the window of the house, was a tiny girl -- probably under two years old, gently patting the windowpane.  I stopped and looked at her; she saw me, her face lit up with a smile of delight, and she waved.  I waved back and went on my way.

This brief moment of sweetness stayed with me throughout the day.  There was something almost magical about seeing this little person playing happily in an in-between space:  not quite inside and not quite outside either.  I wondered if maybe she was having a game of hide-and-seek with her parents, or if she was just up early because of the time change and had found this secret place to play.  I'll probably never know, and I may never see her again either, at least not in such a unique way.  But it was a precious shared moment that brought us both joy.