Tag Archives: children

It’s after midnight

15 May

…that makes it May 16th.

Three years ago today, I recorded 2 tonic seizures in Jade’s logbook. Those were the last seizures we ever observed. Somehow, maybe because the diet was and remains so consuming and rigorous, I can’t fully comprehend that span of time.
But I know, academically at least, that 3 years is a big milestone.
And I realized earlier today that even though there are a number of Jade’s medical issues that continue to make me anxious, it’s been a long time since I fell asleep straining to hear a gasp in the night, counting another seizure. It’s been a long time since I watched her and ached over her constant fatigue from fighting seizures, and over her sedation from fighting her drugs. It’s been a long time since I’ve had to hover by her side, waiting to catch her in case a drop seizure snuck up on her to violently throw her to the ground.
Today she is going to audition for the school talent show. She’s planning to dance. She’s never taken dance, but that doesn’t matter. She believes she is wonderful. She believes she is special. She believes she is smart.
She knows herself. And she doesn’t remember having seizures.
I do. But, after three years, some of it is starting to fade, just a little. And all I can say is… thank God.
Advertisements

Past tense

11 Feb

Jade and I just got back from a whirlwind visit to Vancouver: down on Wednesday, home on Friday. (This whole month is a whirlwind, to tell you the truth, but I won’t tell you all about it right now. I just want to share with you the best moment of the trip.)

Jade’s regular neurologist is off on maternity leave, so we met Dr. Farrell for the first time. He’s a wonderful doctor, and I believe he founded the keto program at BC Children’s Hospital, so we knew we were in good hands. Jade had done her EEG in the morning, and Dr. Farrell came in to discuss next steps with us, including how quickly or slowly to wean her off the diet. Her EEG looked great and Dr. Farrell reiterated one characteristic we know about Myoclonic Astatic Epilepsy: that, if quickly brought under control, it is generally considered a childhood epilepsy.

But this is how he started off the comment: “The type of epilepsy she had….”

Let me say that again:

“The type of epilepsy she HAD…”

That is the first time any medical professional has talked about Jade’s epilepsy in the past tense. It didn’t really matter what he said after that. The fact that he had just called her epilepsy a thing of the past vibrated in my brain like a thing alive, and is still making me quiver with amazement.

It might still take a year — or even two — to wean Jade of the ketogenic diet, and I won’t feel like this is all really over until she is. But I feel like we’ve crossed an amazing threshold.

Epilepsy, past tense.

A very long day

23 May

I’m now home again, since we decided to have Michael stay at the hospital with Jade.  It seems they actually had a good time together there today, playing out on the patio of the pediatric ward, reading books, watching silly movies, and even getting a nap in.

After finishing work (which I finally managed to make relatively productive) I had the pleasure of going to the insanely busy grocery store to stock up on much-needed supplies; our fridge was all but empty.  By the time I got home, it was 6:00, which is when we usually eat supper.  The kitchen was in an abysmal state, so I tidied up and had sandwiches for supper while cooking up some chicken breasts to turn into snacks for Michael.  He and Jade had been served supper around 5:00, and he knew he was going to be hungry. 

I got Jade’s playpen and some overnight supplies for Michael, then loaded Nanuq into the car, reinstalled the bike rack, and attached Michael’s bicycle.  I got everything lugged up to Jade’s room (on the second floor) around 8:00, only to find that our “very tired girl” wasn’t tired at all.  Michael got out on his bike in the trails around Riverdale so that he could get a little fresh air after being indoors all day.  I napped on the bed in a vain attempt to get Jade to sleep in her playpen.  She played happily in there, alright, but no sleeping.  Apparently, the nurse came in.  I didn’t see her, so I guess I must’ve fallen asleep.  But Jade waved happily at her and said hi.

I was going to leave right after Michael got back around 9:00, but he said I should stick around.  So I did.  Jade was still going strong, in a very good mood.  Finally, I decided to call it quits at 10:15.  I tried to put Jade back into her playpen and she protested loudly.  Michael tells me she fell asleep two minutes after I left.  Apparently, she can’t sleep when I’m around.

Anyway, she’s behaving completely normally, eating well, and charming the pants off everyone, so I’m sure she’ll be home first thing in the morning.  The doctor from Emergency is referring her for an EEG (not sure what that is, and I’m too tired to look it up) in Vancouver, but it likely won’t happen for a month or two.  But we’re assured that it’s unlikely that Jade will have another seizure.  I’m okay to go with that for now.

Please pardon the lack of eloquence.  I am bone-tired, but since Michael and I have been pretty unreachable today, I wanted to make sure the latest news was up.  So don’t worry too much NaiNai and Gran!

The benefits of a tidy house

25 Mar

Yesterday morning, Jade and I were home alone because Michael was out spring camping with his brother and Norris and Nanuq.  I wasn’t at all ready to get up when Jade was, so I spent the first few hours of the morning reclining on the couch and on my bed while Jade played.

She had decided to put on her “Squeaky Feet” shoes, so I could hear her, even though we weren’t in the same room.  I could also hear her talking to herself, and some occasional thumps as she moved things around.  I did get up to check on her occasionally, but didn’t do anything to interfere with her fun.  By the end of my lollygagging, she had removed almost an entire set of “Children’s Nature” books from the shelves and piled them on the floor, pretty much in the main drag that leads to the stairs.  Instead of putting them away, I simply shoved them aside as we went upstairs to find a snack.

That sets the stage.  Next comes the part where the boys came back from their camping trip.  We looked at pictures of their adventures and Michael praised Nanuq for working so hard pulling the kicksled, which Norris rode most of the time because he’s got a gimpy knee these days.  As a reward, Nanuq had been given two big chunks of salmon and a goodly portion of steak.

At some point fairly late in the evening, I suddenly remembered that today was a work day, which meant packing lunches and such.  Hey, it’s been four whole days since this work thing happened; who can blame me if the routine was a little off-kilter?  By the time I finished packing lunches (which I’d had to actually cook, since there were no leftovers from our extremely mediocre A&W supper-on-the-run) I flopped into bed, forgetting to put Nanuq to bed in his crate.

So, what do you get when you have a pile of books on the floor and a dog full of unfamiliar people food and free to roam the house at night?  Well, Michael can tell you all about it because he stepped in it as he was coming upstairs this morning.  Dog diarrhea.  Multiple deposits.  Most of them strategically placed on the heads of highly educational grouse, moose, bears, butterflies, and other defenseless wildlife unable to run away, bound as they were to the pages to which their likenesses were affixed.

The good news was that these being hard-cover books, some of them could actually be salvaged.  It even gave me the opportunity to disinfect them, something I hadn’t done before, even though I’d bought them in a yard sale, and what was I thinking not disinfecting these books before, which might carry small pox or the plague, for all I know?  Thank goodness Nanuq crapped all over them and rectified that little oversight.

Alas, not every book could be saved.  Some of the effluent came in contact with not just the covers, but with the edges of the actual pages; these I did not even attempt to rescue.  Fortunately, only three books had to go.  Grouse was one.  Alligators and woodchucks was another.  How sad that these noble creatures are now extinct.  At our house, anyway.

And so, I am once again reminded as to why having a tidy house is so much preferable to an untidy one.  Wouldn’t you rather clean dog poo off the rug than off a pile of children’s books?

Body heat

11 Feb

Remember when they taught you in First Aid that the best way to warm someone hypothermic is to give them skin-to-skin contact?  It really works.  Not that I ever doubted it, but yesterday was the first time I actually had to use the technique.

We’re finally out of our 3-week deep-freeze (-40 for most of it) and yesterday it warmed up to a beautifully sunny -20° C.  We’d had a wonderful morning hosting a brunch for The Big Band, and we decided a family outing would be the perfect way to cap off the afternoon.  Tim and Christiane joined Michael, Jade, Nanuq, and me, and we headed for Ice Lake, Michael pulling the sled with Jade, blankets, firebox, and other goodies.

I haven’t had Jade out much at all over the past few weeks, and even before the crazy weather, I never took her out for more than about 60 minutes, maybe 90 tops.  She started crying not too long before we got to Ice Lake and kept it up for most of the time we were there making a fire in the firebox and making bannock-on-a-stick.  I even breastfed her for about 10 minutes because that was pretty much the only comforting thing we could figure out (and that’s the kind of thing that makes me reluctant to quit, although I’m definitely getting there…).

As the sun started its descent, it was getting markedly colder and we hurried to pack up and head for home.  Michael went on ahead with Jade to get her there as quickly as possible.  We weren’t sure if the trouble was hunger, poopy diapers, cold, or just boredom, but Michael figured he’d run a bath for her when he got back, which is a great idea given it can take care of poops, cold, and boredom all in one shot.

I think I got back about 5 minutes after he did and I could hear the water running and Jade wailing.  After peeling off my outer layers, I headed straight for the fridge, heated up some milk, and brought a bottle to Jade.

She was kneeling in the tub of warm water, her hands red, her whole body shaking.  Michael said her hands and feet had been warm when he took off her boots and mitts, but as soon as he undressed her, they turned ice-cold.  I took one look at her shaking — which gave me the most miserable feeling in the world — and knew I had to hold her.  I said to Michael, “I’m just going to put her right on my body,” stripped off my multiple tops, and yanked her out of the tub.  With a towel wrapped around behind her, the calming effect was almost instant.

Michael went to warm up the sauna, and we retreated there while Jade sucked on the bottle and Michael made a terrific supper.  Jade was giggling and happy within a few minutes.  I still felt pretty terrible that we’d let her get so cold; her little body can’t retain heat for very long, even with two pairs of pants and socks, snowsuit, and blankets.  But I was pretty happy that I instinctively did exactly what Jade needed; makes me feel like I could maybe get this mothering thing right once in a while.

Thoughts on Valentine’s Day

8 Feb

Jade came home from daycare with a note in her lunchbox this week.  It was a list of names of all the toddlers at the daycare, her “classmates”, if you will.  The list was entitled “Valentine List for Upstairs Toddlers”.

When Jade was in the baby room last year, she got about half a dozen Valentine’s cards to take home with her.  They had been filled out by the daycare staff on behalf of all the kids, and it was a fun if somewhat superfluous gesture.  I must say, though, that I hadn’t given a moment’s thought to Valentine’s cards for this year.  I guess I didn’t think I’d have to worry about doing Valentine’s cards for Jade until she started school.

I’ve gotta say, from the vantage point of an adult, I have a somewhat jaded view of children’s Valentine’s card.  It seems like a waste of a lot of paper and a lot of insincere sentiment.  In the “old days”, kids just gave cards to the other kids they really liked (poor Charlie Brown), and often a lot of time and energy was spent picking out the right card or hand-crafting them.  Of course, it all gave rise to some justifiable concern over Valentine’s Day being a popularity contests and damaging to some kids’ self-esteem. 

By the time I was giving out Valentine’s cards in elementary school, it was understood that you gave a card to everyone in your class.  So you just had to make sure you didn’t pick anything too sappy to give to the kid you didn’t really like that much.  I remember how much time and energy it took to fill out all those Valentines, a chore I didn’t particularly appreciate.  On the other hand, I do remember how fun it was to read all the different cards I’d received, to see what “extras” some special someone might have written on their card, the excitement of the disruption from the regular school routine, and the joy of pondering endlessly whether that little boy I liked meant something special by the card he had chosen.  ‘Cause that’s what girls do.  Okay, maybe it was just me.  And I guess I should say boyS, since I’m the girl of perpetual crushes.

Anyway…

It was fun.  But how much can it really mean to a bunch of two-year-olds?

I know some people don’t like the idea of Valentine’s Day at all.  I don’t mind it, really.  I think we can rise above the capitalist brouhaha and take it as a gentle reminder to count our blessings and appreciate those we love.  You might argue that we should do this every day, but sadly most people don’t have the energy to be that thankful all the time.  Life happens, you know?  For me and Michael, Valentine’s is a bit of an anniversary, marking our first date and our first kiss (which was completely his fault, the schemer) so Michael is always in charge of cooking us a fancy dinner that day.

So I don’t mind Jade growing up with Valentine’s Day being a fun day for celebrating friendships.  I just wish she were old enough to fill out her own damned cards.