…that makes it May 16th.
On Thursday afternoon, I took Jade back to school after the school day was done. We sat down with Mme. S for the first parent-teacher interview of the year.
Mme. S told us Jade was a joy to have in the classroom, and a very sweet girl. (We knew that, of course. *ahem*) Unlike many kids, she is able to concentrate on one task for a long time, and it can sometimes be difficult to get her to move on to the next activity of the day. (Yep!) She is not very enthusiastic about gym class. (Yeah . . . I identify with that, although Michael is a bit bewildered.) Did we have any questions?
Jade’s kindergarten teacher had mentioned that it can take Jade some extra time to learn things. So I asked Mme. S if she had any concerns for Jade’s learning in the classroom. She furrowed her brow. No, not at all. And she’s very enthusiastic about reading. (We knew that!) In fact, Jade was placed in one of the more advanced writing groups. (They’re learning to print, so I don’t mean writing novels, or anything.)
I don’t want to brag about Jade. I’m just so happy and so proud of her. After all the pummelling her brain took at the hands of epilepsy, she managed to heal, and she’s thriving. She’s excited to learn, she’s stoic about her special diet, and she’s full of life . . .
I still think she’s a miracle.
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.
For four days now, I have skipped putting Halia down for her afternoon nap. The first two days, she slept for 12 solid hours. Last night she woke up once at 3 a.m. and wanted some boobing. Tonight I’m hoping for the 12-hour miracle to repeat itself.
Now if I could just get myself to bed at a reasonable hour, I might become a productive member of society again.
No, really, I am sooo happy with my set of problems right now. Balance is a hard thing to find. Working, even half-time, has added a lot to my plate, so that fitting in parenting (single parenting a lot these days, with Michael on the road), keto cooking, music, advocating for Jade, blogging, and sewing are all jostling for attention, and they can’t all win. Or else they do, but then I’m a cranky miss crankerpants to everyone around me. Let’s not even talk about stuff like exercise because that just doesn’t happen.
But even though it is exhausting, it is good. Jade has gone six months seizure-free. (!!!!!) Halia makes magic everywhere she goes. What more could I ask for?
But! Yes. It is exhausting.
I was talking to a good friend the other day; she has two grown sons just a little younger than me, and one of them had some very strict food allergies as a young child, and also required some accommodations when he was going to school. When I talk to her, I feel she understands a lot of what I’m going through now.
“I don’t want to complain,” I said to her. “I know plenty of people who’ve got it a lot harder than I do.”
“Yes,” she said. “That may be. But you can still acknowledge that your life… your situation is a lot harder than most.”
That made me pause. Thank you, friend. Thank you for letting me feel that I am allowed, at least once in a while, to not like being exhausted.
There are lots of reasons why I don’t want to complain, lots of reasons to feel that it’s ungrateful to do so. Everyone lives with the same reality of 24 hours, seven days a week, and the miracle of tasks that expand to fill every last square inch of time.
But maybe today I’ll try not to feel ungrateful just because I’m not glad that Jade has to be on a ketogenic diet. I can be grateful for the miracle it has wrought without liking the daily consequences.
Maybe today I’ll acknowledge that leaving the dishes for tomorrow morning — or even tomorrow night! — might just be the best thing for me to do.
Maybe today I’ll go to bed at a reasonable hour.
(And maybe, just maybe, Halia will sleep through the night.)
I really wanted to blog last night. I really did. But I couldn’t because Michael was busy on his computer AAAAALLLLL day and all evening, too. And I couldn’t use my laptop because when I tried to, I got the evil Blue Screen of Death three times in a row.
Apparently, a series of brownouts in the morning fried our router (no more wireless in the house for us for a bit) along with my computer. I don’t even want to think about several hundred photos that I never got around to backing up. Waahhh!
But actually, the post that I wanted to write last night was a good one. A happy post. So you’ve got to know that it must’ve been a pretty terrific day to overshadow the deadness of my laptop.
What made me so happy?
It was a beautiful sunny day. Halia was napping, so Jade and I bundled up (but not too much because it wasn’t very cold) and went out. I dragged the sled, but Jade wanted to walk. We walked at a nice, normal toddler pace. Jade chased Nanuq. She explored the woods off-trail. She picked herself up from the ground after her many falls (not from seizures, but from stiff boots in slippery snow). She didn’t want to come back inside after Michael phoned to say Halia was up and needed feeding.
In short, Jade was like a normal toddler.
Let me say it again. She wanted to walk. We walked at a normal pace. She explored off-trail. She was able to get up when she fell. She still had energy at the end of it all. (So Michael knocked off early and went out with her.)
For a “normal” mom, this would have been a pleasant afternoon. For me, it was pure joy.
Some days you just want to curl up in a corner and give up on everything. It’s not just me, right?
When I dragged myself up the stairs this morning, Michael, who was just as sleepy as me, asked me if he’d put Jade to bed last night. I thought back. Michael had had to work out of the house all day yesterday and then went to band practice in the evening, so suppertime and bedtime were particularly rushed and chaotic. Nope, I was the one who put Jade to bed. Turns out I forgot to give Jade her medication last night.
Jade is often zombie-like in the mornings. She seems to feel the same way we do about being dragged out of bed at 7 a.m. (I know, I know many of you get up much earlier) but this routine of making her get up for breakfast seems to be the main thing that has helped with getting her to sleep at night. It’s not fun watching her staring — and often drooling — during breakfast. Jade was particularly unresponsive this morning, especially after a drop seizure slammed her into the spout of her sippy cup, giving her a huge bump just below her right eye. I was so upset and angry I wanted to slap her and shake her just to MAKE HER WAKE UP. It’s been a long time since I’ve felt that angry. But I realized that I was angry with myself; if I could have shaken and slapped myself, I would have. I was angry about the sheer negligence of missing her medications and I was angry that there’s nothing I can do to just maker her normal again. This morning I just wanted to cry about how unfair it all is.
Jade’s favourite part of breakfast is generally the fruit. I often save the fruit for last in order to make sure she gets all her fat into her. We’re low on fruit at the moment, but I found one pear left at the bottom of the fruit drawer. I’ve never tried giving her pears since starting the diet because it’s one of the more sugary ones, which means she gets less of it by weight. I was pleasantly surprised when I weighed it out that it didn’t look like such a small amount, after all (although you would think so, if you saw it). However, I guess the sandy texture of the Bosc didn’t appeal to her. She ate one piece and then chewed a second but kept it in her mouth. Nothing I could do could induce her to swallow it and she was more zombie-like than ever. I was afraid that if she didn’t swallow it until later she’d get a sugar spike in her system. So finally I gave up and told her to spit it out. Funny enough, she complied right away.
And, wouldn’t you know it, she perked right up. She usually does pick up energy once her breakfast kicks in, but I was so scared about her missed medication that I thought she might spend the whole day in a dazed stupor. Instead, she’s playing in her toy kitchen, happy as a clam.
Maybe I can carry on, after all.
In spite of my morning fending off panic attacks, Jade had a pretty good day yesterday, even though she woke up with just trace ketones — yikes! It was a rough start, but got better from there.
After talking with the dietitian, we all agreed that Jade is probably running out of fat overnight, which causes her ketones to drop. Starting with supper last night, Jade will be getting an extra 25 calories per meal. (Her ketones were up this morning — hooray!)
The calorie increase means recalculating all the recipes, but the dietitian has already got a bunch of them done, and besides, it’s worth it to help keep Jade perkier. We all love perky kids, right? This is what happens when Jade is perky:
(Here’s the direct link if the above isn’t working.)
I’m so excited today! Michael had a chat with Jade’s neurologist last night and we got the go-ahead to drop the morning dose of Keppra. We have never liked this drug. Jade started it late in September. We knew it probably wouldn’t help, but she was in such a bad state at the time and we weren’t going to be starting the ketogenic diet until November, so it was worth trying in the meantime. Almost immediately, she started having those awful violent drop seizures that caused her so many facial and head injuries. We also thought it affected her behaviour.
I believe we mentioned our suspicions to Dr. Huh when we saw her in October for our earlier-than-anticipated start to the diet. Dr. Huh didn’t want to drop the drug just yet, though, because it’s generally a bad idea to change to many variables at once. If things get worse (or better), you don’t know what the most likely cause is.
Anyway, today’s the first day Jade got to skip her half pill of Keppra. And she’s had NO BIG DROP SEIZURES today. Well, maybe that’s a coincidence. But she’s also bright and energetic. Also somewhat emotional at times. But! I have great hopes that we’re seeing the last of the drop seizures. Wheee!
One of the most difficult aspects of Jade’s ketogenic diet has been her vitamins. The food she eats is not varied enough to supply her with all the nutrients she needs, so having the right supplements is essential for her long-term health.
Michael and the dietician decided to try out a specially-made supplement called “Phlexy-Vits”; they figured it would be the easiest option because it’s all-in-one. The trouble is, it tastes absolutely awful. The first time she was to take it, I mixed the powder into the cream for her evening meal. I gave it a taste. It tasted like the cream had gone sour. I dumped out the cream.
We’ve tried all sorts of ways to mask the taste. Sweetening it with stevia. Adding mint. Adding extra water to dilute it. The best way was to make it into a paste (as compact as possible) and sweetening it, but even still it was a struggle every day, with lots of tears from Jade, and heartache for us.
The alternative is to use vitamins available from the drug store, but it means giving her three different pills and an effervescent tablet. Three more pills!
One of them, though, are Bugs Bunny “Complete” vitamins. Since Jade was eating (and enjoying) chewable vitamins before she started the diet, I figured she just might go for these. We tried it for the first time today.
When I told her it was time for her vitamins, Jade said, “No!” Emphatically. I showed her the Bugs Bunny vitamin. She stared at it, then quickly plucked it from my fingers and popped it into her mouth. Then she asked for more.
I gave her the calcium-magnesium tablet next. These are not chewables, so I tried one. It didn’t have much of a flavour, but was sort of sour in the middle. I gave Jade hers. She chewed it up with no complaints. Then she got the Caltrate tablet and she did the same thing. I’d have thought that she’d spit out the non-chewable vitamins because they don’t taste very good, but I guess after the awfulness of the Phlexy-Vits, she doesn’t mind.
Why didn’t we try this sooner?
… but wireless Internet in Whitehorse hit an all-time low yesterday when apparently all of Navigo / NorthwesTel / Bell’s customers went without service for the entire day. Sorry to leave you in suspense! To summarize:
- No Nugget yet, but when Heather came to do my prenatal checkup yesterday, she said his/her head was so low that she couldn’t even feel it! Also, she says her practice tends to go crazy around new moons and full moons. There’s a full moon on Wednesday, so…
- After a couple of great days, Jade seems to be kind of crashing again, with lower ketones and more seizures. Michael and I are actually wondering if she’s not getting enough calories. There’s still so much learning to do.
- Medicine and vitamins continue to be a huge challenge. I try to coax and wheedle as much as possible, but we’ve had to resort to physically holding her and forcing them in a number of times. I can’t even express how much I hate doing this, especially on nights like tonight when meals are also a battle.
- The house is slowly being tamed as my mother works her awesome super-organizing-machine powers in between Jade-watching and cooking shifts.
- We moved all of Jade’s things into her new room today and she’s spending her first night in the big-girl bed. She’s had a few naps in there already, so we’ll see how tonight goes.
- I am exhausted. But I REALLY wanted to try baking a low-carb almond bread for Jade tonight. But it takes an hour to bake. Argh. Hmmm, maybe I’ll just weigh out the ingredients and bake it tomorrow. Then it will be ready just in time for Jade’s morning snack…
- I am SO ready and yet SO not ready for this baby to arrive. And, um, no, we still don’t have names picked out.