Archive | October, 2008

Home free

31 Oct
Ready to go out

Ready to go out

God, it feels good to be home!  I was discharged from the hospital on Wednesday afternoon, having apparently passed the kidney stones (and also, apparently, averting the desire of one of the OBs to INDUCE LABOUR — he must be INSANE to think I could go through childbirth without first recovering from the kidney stones!) and spent the rest of the time in Vancouver running around to grocery stores and hospital appointments and cooking fiddly recipes full of cream and butter in which each ingredient must be weighed to within 0.2 grams.  So this is the first time I’ve had a chance to get back to the blog, even though I originally fully intended to keep it up to date during the whole diet initiation phase.  Yeah well, the Universe had other plans.

[Paranoia aside:  I worry that those of you who don't actually know me in real life will start thinking that we're making up all this stupid drama in order to get attention and sympathy.  Because I hear there are people out there sick enough to do that.]

So, I missed half the training at the hospital because of the damned kidney stones, but since we’d done so much research ourselves before going down, it really wasn’t a big deal to catch it all up in the one session I got to go to on Thursday.  Plus I got a chance to ask the questions I had.  The whole week became more about making sure Jade got a good start than it was about teaching us.  The keto team was pretty darned impressed with Michael.  (Sadly, it seems they don’t have much faith in fatherkind.  They said they get nervous when dads come without mums to keto initiation, but they didn’t say anything about mums coming without dads, which probably happens a lot more often.  Lucky us that Michael is such an awesome dad.)

As for the kidney stones, I hope to hell it’s something I never have to go through again.  Besides the joy of having to pass all your urine through a sieve (to look for stones), staying hooked up to an IV (to pump the body full of fluids), and spending your time in one of those gorgeously fashionable hospital gowns with your ass hanging out the back (because who has time for underwear when all you’re doing is sleeping and peeing?), there is the pain.  No two ways about it, the pain is awful. I spent a whole night and day on morphine — I’ve never slept so much in my life.  Every time I asked for a shot, it was after struggling with guilt and fear and going for as long as I could stand it.  If I get morphine, it means Nugget gets morphine, and I really don’t need another drug addict baby around here, yanno?  But let me tell you, I needed something to stop the pain, if only to stop all my other muscles from tensing up (my abs were very sore by the time the kidney stopped hurting).  People, I tell you solemnly, I WOULD RATHER BE IN LABOUR!

Tail dragging in the snow -- I love that this costume allowed Jade to wear warm clothes underneath!

Tail dragging in the snow — I love that this costume allowed Jade to wear warm clothes underneath!

There were some nice things about the hospital stay.  I met some very nice doctors and nurses (I LOVED the admitting doctor at Emerg).  And the hospital was close to the New Westminster waterfront, so I got to hear train whistles blowing, a romantic sound when it’s just heard from a distance.  And they did an ultrasound to check out my kidneys, ovaries, and appendix (couldn’t see the appendix because of the baby in the way), so I actually got to see Nugget’s face!  Being so late in pregnancy means there’s a lot more detail, and my sister got to see it with me.  We even watched Nugget make sucking motions with a hand in front of his/her face.  Nope, still don’t know the sex; I specifically told the tech I didn’t want to find out.

This whole week has been such a roller coaster, it’s left me extremely hormonal and emotional.  I will cry about practically anything.  The idea of other kids being sick like Jade.  The idea of other families being normal and not having sick kids like Jade.  Watching Jade hit her head yet again with an ill-timed drop seizure.  The fact that Michael had a Nanaimo bar dessert on the plane even though Jade was awake, because I really wanted one but it wouldn’t be fair for both of us to have one and not give one to Jade when she can SEE them and is asking for them.  Somehow losing my coat in Vancouver, even though I never actually wore it there.  Jade not finishing her meals, when it’s so important that she does.

I really hope a good night’s sleep will fix me up.

In the meantime, it did my heart good to watch Jade out trick-or-treating.  The neighbours were great about giving out our special non-food treats, and one of them even bought her an extra gift that Jade absolutely loved — a kit containing an activity book, paints, brushes, glitter glue, and other crafty goodies.  Plus, one of my bloggy Whitehorse friends went out of her way to find us some of the harder-to-find ingredients that are important to Jade’s new diet (36% cream, coconut oil, old-fashioned-no-sweetener-added Kool-Aid) and she’s dropping them off tomorrow morning.  And Crook and Nanuq were both well looked-after while we were away.  And my girlfriend down the street reminded me again to make a list of people to invite to a food shower she wants to organize to fill up our freezer for when Nugget arrives.  People are so good to us.

It took a few houses before Jade got brave enough to actually say "Trick or Treat". Notice Michael's clawed face. What a vicious lion.

It took a few houses before Jade got brave enough to actually say "Trick or Treat". Notice Michael's clawed face. Vicious lion...

Mr. Fawnahareo reports:

28 Oct

Fawn is in the maternity ward at the hospital.  She is delivering a…

…kidney stone.

You can read about her latest adventures here, here, and here.

Jade and Halloween

25 Oct

We’ll be home from Vancouver on Friday, just in time to celebrate Halloween!  Yesterday I hit the Dollar Store and picked up some goodies, which I will be distributing to the neighbours along with this note:

Greetings!

As you know, Jade has been having seizures since the end of May.  In the last month, the neurology team in Vancouver has concluded that she is not responding to anti-seizure drugs; since she has now “failed” three drugs, the chances of any other drug working for her are very slim (less than 10%).

This week, we are travelling to Vancouver again to start Jade on a special therapy called the Ketogenic Diet.  This diet has a very good chance of helping her to control her seizures, so we are excited to give it a try, but it does mean some big changes to what she eats.

One of the big changes is that she will not be able to have any sugar, which of course means no Halloween candy.  We think she can still enjoy the fun of Halloween, though!  When we come to your door, we’d love it if you could give her the enclosed non-candy treat.  (We’re sure you won’t have any trouble recognizing us, even though she’ll be arriving as a lion.)

We’ll be leaving on Sunday morning and will be back on Friday afternoon, just in time to take part in Halloween.  Hope you have a great week!

Thanks in advance for your help!

Fawn, Michael, Jade, and “Nugget”

Here are some shots of Jade discovering her costume for the first time a few weeks ago.  (Thanks to Tim for most of these pictures.)  Click on the photos to enlarge them.

Goodbye, “my Kim”

24 Oct

Michael’s brother Tim loaded up his trailer today and left Whitehorse for the sunny shores of Ottawa.  (What?  There are rivers there.  Rivers have shores.)

He says he’ll be coming back to Whitehorse, but he’s been known to change his plans, so he put up with a lot of ribbing today as he was transporting his bed, his dresser, his tools, and all the rest of his life into the trailer.  None of us knows if he’ll really be back.

One thing I do know: I miss him already.

The Glad Post

22 Oct

This is the post I was originally going to write yesterday, a post that betrays my inner Pollyanna and attempts to alleviate the recent somber mood of this blog. It’s important to take stock and count our blessings when everything seems to be going wrong. But the opportunity to put Jade on the ketogenic diet a month early was a better restorative than any pondering of good fortune. I was practically myself today, able to work and not bursting into tears any time someone asked me how I was doing.

Anyway, here are some of the things that I am GLAD for these days (in no particular order):

On our date last Saturday. Yeah, we needed a break.

On our date last Saturday. Yeah, we needed a break.

1. My hubby. We’ve been together for over 10 years now, and we’ve had our ups and downs, but when push comes to shove, he is an absolute rock. He’s been the one spending uncomfortable nights in the hospital with Jade and travelling with her for her appointments. He always manages to find new games to play with Jade when I’m out of ideas, and she absolutely adores him. The last time he was out of town for a week, she asked for him every single day.

2. My family. My parents live in Germany, Michael’s parents and sister are in Ottawa, and my sister is in Vancouver, but everyone manages to support us emotionally through phone calls, Skype video calls, IMs, Facebook, and e-mails. It may seem like a small thing, but hearing Michael’s mom say, “You guys are amazing,” or my mom say, “You are so special,” is amazingly uplifting.

Having Tim living with us has been a huge blessing. Particularly because all the rest of our family is so far away, it’s been wonderful to have Jade’s uncle and godfather right here. Jade calls him “my Kim” and she wants him to pick her up whenever he comes in the door; I can’t think of a better way to illustrate how much she loves him.

3. Friends. We have friends who are willing to listen to us unload our troubles without ever reproaching us for talking too much about ourselves. Some friends have offered us food, offered to look after our animals when we go away, even offered to come watch Jade to allow us some time to get away.

Last Saturday, our friend Linda, who is an angel on earth, phoned up and insisted on coming over that afternoon to give us a few hours off. She instantly understood all about the seizure log, didn’t bat an eyelash at the lesson on using rescue medication, and was just so obviously comfortable with Jade and Jade’s seizures that we never had even a moment’s worry when we headed out the door. I actually started a blog post about her that very evening, but I didn’t get to finish it and that night was such a bad one for Jade that I didn’t have the heart to finish it next day. But boy, did it ever feel good to go out with Michael for just two hours and have a bit of a date like a normal couple.

Mmmm, apple streusel

Mmmm, apple streusel

Belly at 36 weeks. On our date outside the Yukon Artists @ Work Gallery.

Belly at 36 weeks. On our date outside the Yukon Artists @ Work Gallery.

4. My laptop. I know this sounds ridiculous, but I am sooooo happy to finally have my laptop back, thanks to Ryan. (E-mail! Blog entries whenever I want! By blog reader!) It’s re-Vistafied (because apparently it was impossible to downgrade the BIOS to one that could run XP) but it is working much better so far. Despite the fact that the thing was basically a corpse when he got it, Ryan wouldn’t let me pay him for the time it took to get it working again. (But I’m not going to let him get away with it…)

Jade's teeth at 32-ish months

Jade's teeth at 32-ish months

5. Jade’s new molars. Even though they may have contributed to the recent bad time Jade’s been having with her seizures, I’m so glad her last molars are finally coming in so that we can get this darned teething thing over and done with at last. Jade’s teeth have all be slow to erupt (with her first one coming at age 15 months!) and the last time she had any teeth come in was in March.

6. Great kids. When we do see her come out of her medicated fog, Jade is such a happy and loving child. She delights in meeting people, and she isn’t shy to join in on games wherever she goes. She truly makes the best of things.

Nugget has been great, too. I sure haven’t been spending a lot of time worrying about him/her, with all the worries we’ve had about Jade, and s/he’s been so accommodating by kicking lots to let me know s/he’s doing well, getting into place so that I don’t have to worry about a breech birth, and not being resentful of having so few pictures taken of him/her while in utero.

Jade happy in her helmet

Jade happy in her helmet

7. You. You have no idea how much it means to me to have you share our joy and our burdens. Your comments, words of encouragement, prayers, and offers of help are such a blessing and really fortify us in our time of need. Thanks for being there for us.

Stunned

21 Oct

The world got turned on its head this afternoon and I’m still rather stunned.

Last Wednesday, I sent an e-mail to the neurology team at BC Kids asking some urgent questions about what to do about Jade’s constant seizures.  Because of a mix-up, we didn’t get a response until today, even though Dr. Huh actually wrote her response before the weekend.  We had one of the worst weekends of our lives (as you all know), and I called again this morning hoping for some answers.

We ended up getting four phone calls from neurology.  The second one is the one that’s left me stunned.  That’s the one where they told us that a space opened up and they can put Jade into the ketogenic program next week.

!!!!

The question really wasn’t whether or not to get Jade down to Vancouver next week.  We’ve been asking ourselves how we could possibly survive another month like the last couple of weeks, so getting Jade into the program right now is truly an answer to our prayers.

The question was whether or not I should go down, too, given how pregnant I am.  I want to be there.  It’s important for me to be there to learn how to calculate the meals and implement the diet at home.  Also, let’s face it, if I had to stay behind, I would go absolutely insane.  Jade’s doctors want me there, too, if at all possible.

The good news is that my “official” due date on the doctor’s records is later than what I’ve been writing on the blog because it was never corrected based on the ultrasound.  So after talking to midwife Heather (and getting some Vancouver midwives’ phone numbers just in case) we’ve decided that it would be best if we can all stay together, if it can be arranged.

Jade will start the diet on Monday.

UPDATE: Yukon Medical Travel was in touch with Michael this afternoon to say we can pick up our itinerary from Marlin Travel tomorrow afternoon.  That means we’re all going for sure!  Yeee-haw!

Finding Jade

19 Oct

Can anyone tell me where my daughter has gone?

For two weeks now, Jade had been waking early in the morning with clusters of seizures we’ve had to break by using emergency medication.  Up until last week, that was Valium.  But that drug has to be administered rectally (not fun for any of us, least of all Jade) and we’d been noticing that it was becoming less effective.  It used to be that once administered, she’d go for a whole day with no seizures at all, since the Valium was still in her system.  Now it still seems to stop the clusters, but she continues to have seizures.  All day long.

While we were in Vancouver, we asked about an alternative and Dr. Huh gave us a prescription for Midazolam.  That’s the same drug they tried to use for Jade’s first spinal tap, the one that didn’t sedate her but made her loopy, instead.  The good thing is it can be given orally, so we’ve tried it a few times.  Who cares if it makes her loopy if it stops the seizures, right?  Since we’ve gotten home, she’s had the Midazolam about five times, including twice today, the first time we’ve ever used emergency medication twice in a day.  In fact, she’s supposed to be sleeping right now, but she’s so wired from the Midazolam that she’s upstairs with Michael, who is trying to feed her since she’s hardly eaten all day.

This whole cycle scares the crap out of me.  There’s a very real and very scary chance that she could suffer brain damage if we let her seizures go on for too long.  That fear tortures me.  But the more we use the emergency meds, the less effective they are.  We have a two-year-old whose body is already addicted to drugs.

For the past few days, it feels like Jade has been disappearing.  She spends a lot of time tired and emotional and asking either for a bottle of warm milk (she has gone through 8 litres this past week!) or asking to sleep. When she tries to sleep, she has seizures that wake her up.  Sometimes she seems to be in a fog (Michael describes it as being “drunk”) and other times she just collapses on us and cries and can’t verbalize what she needs or wants, as if she’s forgotten how to talk.

When she’s actually alert, she’s been getting into everything and testing us, like pulling Crook’s tail repeatly after being told not to.  Granted, that could be her being a toddler, but to me, it’s just not like the child I know she is.  I can’t explain it, but it’s just not her.

Every once in a while, we get a glimpse of her real personality, and it’s like a burst of sunshine in cloudy weather.  I think, “Hey, look, there’s Jade!” and I wish I knew how I could keep her from slipping away again.

The breaking point

19 Oct

When I was in junior high, I read a book about a girl whose father had a mental breakdown.  I’d never heard of mental breakdowns before and found the topic rather intriguing.  My parents are extremely hardworking people, and I remember asking my dad, “What if you had a mental breakdown?”  I still remember his response clearly, delivered with a dismissive snort: “That’s not my style.”

I don’t think it would be too contentious to say that there are people who really are mentally tougher than others, some who are more prone to panic, some who are more stoic.  I also think that if you put anyone under enough stress for long enough, there will be a breaking point.  But I am thankful that I seem to be cut of pretty sturdy cloth.  Like my dad, I’d rather hope for the best, look for solutions, research, analyze, whatever it takes to get through things.  (Unlike my dad, I’m a lot more likely to actually express my emotions while I’m doing it — but then, I don’t have the burden of a Y chromosome.  Ha!)

Over the last couple of months my standard response to, “How are you?” has become, “I’m hanging in there.”  I can’t lie and say things are great, but at least it’s true that I’m doing what I can.  The standard response to, “You are so strong!” is, “You do what you have to do.”  What else can we do when we have no choice but to live the life we’re given?

Well, my friends, the truth is, I have reached a breaking point.  Maybe not the breaking point, but I can feel my strength ebbing.  The last couple of weeks have been pretty nightmarish (more about this in another post) and I am starting to crack.  I was on the brink of tears all day today.  I am bitter and angry and even resentful of well-meaning remarks, which is totally unfair.  A few days ago I thought wryly that maybe we’re going through this now so that when we finally get to start the keto diet — and we immediately see miraculous results, of course — it will seem easy to deal with by comparison.  But right now, I don’t know how we can possibly go through another month of this.

Sew’onderful

18 Oct

These past two weeks have pretty much chewed me up and spit me out.  The proof is that I finally went to the doctor to get a note about going on stress leave.  But I really don’t want to turn this blog into the All Epilepsy All the Time Channel, so today I’m going to talk about my birthday present.

The truth is, my birthday isn’t happening for a month yet, but I, um, went and bought myself my present yesterday.

It all started a couple of weeks ago when I decided to sew a body pillow for myself.  Michael has complained about the many pillows taking over the bed and I thought maybe a body pillow would make a good substitute for a few of them.  One pillow instead of three!  The body pillows I found in our local stores weren’t long enough, though, so I bought a body pillow case instead and I stuffed it with some leftover pillow stuffing that I’ve had sitting around for, oh, five years or so.  To stitch it shut, I hauled out my very old sewing machine, a lead-bottomed beast that once belonged to my mother.  It’s so old that the plastic body is crumbling.  I’ve often thought that I would sew a little more often if the beast weren’t so awkward to haul out and if it weren’t so temperamental.

How temperamental?  On the evening in question I plugged in the machine and started stitching.  Every time I pushed down on the foot pedal, a little puff of smoke would emanate from the motor.  (This is actually not new, but it does make me rather nervous.)  Every few inches, the light would go off and the machine would stop working — no power was getting to the machine, but I couldn’t tell why.  I’d advance the needle manually by turning the handwheel (still faster than stitching by hand, anyway), and then after a minute or two the light would come back on and I could use the foot pedal again, generating yet another little puff of smoke.

In the end, it took about ten minutes to stitch up a foot of fabric, a job that would’ve taken less than a minute with a non-delinquent sewing machine.  Also, instead of a nice neat line down the end of a pillow, it wobbles and doubles back on itself; a drunken sailor could have done a better job of it in the middle of a storm.  The whole experience left me so paranoid that I decided then and there that this sewing machine had absolutely had it.  In fact, when the power went out 10 minutes later, I thought maybe I’d tripped a breaker somehow, even though I wasn’t even using the thing anymore.  (The power was out in the whole neighbourhood, though, and even at 12:30 at night and sleep-deprived I’m not paranoid enough to think I can shut down an entire neighbourhood with a faulty sewing machine.)  I told Michael the next morning that I wanted a sewing machine for my birthday.

Yesterday I went out with Jade to find a few things for her new room, including blinds for the window.  I couldn’t find anything the right size and decided that blackout curtains would work better, but they require a bit of alteration.  Which requires a working sewing machine.  Since I was at Wal-Mart, it was simple to pick one up while I was there.  Jade was too restless to stay in the shopping cart, so she wandered around the fabric section while I tried to read the features of the different machines while keeping an eye on her.  (She’s having so many seizures these days that I don’t dare let her out of my sight for more than a few seconds.)  I decided on a machine fairly quickly, hauled it into the overflowing cart, and hurried home to feed Jade some lunch.

The machine isn’t actually out of its box yet, but I have read the instruction manual, and I am revelling in the sleekness and non-crumbliness of it.  The only thing I regret is that when I picked Michael up from the airport yesterday (he was in Yellowknife all week) and told him about my birthday present, he said, “Oh… what did you get?”  He sounded a slightly amused and slightly put out when I told him.  Apparently, he’d already spent some time researching sewing machines in anticipation of buying me one for my birthday.

But isn’t it wonderful to know that he was really paying attention?

Fighting the mold monster

16 Oct

Once upon a time, we bought a washer and dryer.  They were front-loaders.  They were stackable.  I was in love.

We just finally got them stacked last week.  While we were in Vancouver, Tim did a laundry room renovation that makes the teeny room seem twice as large as before.  I was ecstatic!  It really is a great thing, but it’s not what this post is about.

I’ve been noticing for a few weeks that the washer has a moldy, mildewy smell in it.  And some of our towels seem to smell that way, too.  Although I never did before (for safety reasons), in the past few weeks, I started leaving the front door of the washer open to let it air out.  And since I can access the machines more easily in our now-spacious laundry room, I gave everything a good wipe earlier this week.

Then I read this post on the Home Ec 101 blog.  I had never ever heard that front-load washing machines are prone to mold growth.  Since it’s apparent that the machine already has a mold problem, I did a search on how to resolve the problem.  It’s scary, but from what I’ve read, it’s not necessarily an easy fix.  Although I’ve been noticing the mold smell only for the past few weeks (and I thought it was because SOMEBODY had left wet loads of laundry in the machine for SEVERAL DAYS, but I’m not saying WHO…) it’s possible that this is a problem that’s been building up for a while.  That scares the crap out of me.  What if this is what’s been causing us to get so many colds.  Or if it has something to do with Jade’s seizures?

I literally found out about this issue just now, so I haven’t actually tried to check out the machine to see where the mold might be yet.  I’ll let you know how the battle goes.  And if you have any tips for me, please let me know.

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