Sleep

There's this totally super cute saying I saw on Pinterest.  It's like word art, room decor for a little girls nursery.  It goes, "Let her sleep, for when she wakes she will move mountains."

It's actually derived from a quote by Napoleon.  Except he was talking about China.  I'm pretty sure most people re-pinning that cute scripture, ordering wall decals to lay out over a crib don't know that.  And it doesn't really matter, because it's cute, and it gives you hope that one day big things will happen.  Let her sleep.  Enjoy that quiet.  Allow bigger things to develop.  Because they will.

When Evie was born, I would watch her sleep for hours.  On my chest, on my lap, in her crib, in my bed...I could watch her sleep all day.  I would watch her go through the process of falling asleep: become heavier in my arms, her breath slowing down, little wimpers every now and then.  Have you forgotten about the infant startle reflex?  It's quite possibly the cutest thing to witness.  They grow out of it of course, so you kind of have to cherish it and pay attention while it's happening....I guess thats most things with kids though right?  Sleep holds an innocence, a sweetness...and all just feels safe and right. 

Sleep though, has taken on a Jekyl and Hyde persona (personas?) for me.  It's kind of the the good, the bad and the ugly all at once.  Sleep has become something that is ya know, only ok in doses...too much of a good thing never works out, ya know?  Sleep has become a sign of something developing, of something bigger, just not something good. There is an obvious difference between the good sleep and the bad sleep, obviously. This is something that happens daily, and it's not like I'm worried everyday (ok, well maybe a part of me is worried everyday, but that's just about anything, not this specifically).  So the normal, every day night time sleep...is good.  The bad though, the bad is when she just doesn't feel well.  Her cheeks are pale, her eyes are dull, her energy level is just enough to turn over on the couch and find a new comfortable position...before falling back asleep for hours. 

When Evie was 2 1/2 years old she drifted asleep.  It happened over a period of a few weeks.  I knew something was wrong, but it was such a gradual decline it was hard to diagnose.  It wasn't until I showed up in the ER for the 3rd time in 2 weeks, with a little girl completely out in her stroller, in her 18th hour of consecutive sleep that I got their attention.  Finally there was no denying, something was wrong.  The next time the sleep started I was ready for it.  Despite not being a "normal" symptom, I recognized it.  This was her pattern, and it was starting.  She was sleeping, had no energy...and I wasn't taking no for an answer, I knew better.

And so she went again from the scary, endless sleep, to the normal, relaxing, beautifully calm sleep again.  And as soon as the transition was made it was obvious.  It was just different, and it was better.  On the inside I could slow down, be comforted in the fact that my little girl was in fact just sleeping, and not drifting far away from me. She was just sleeping again.  And I could watch her, and dream of the bigger things to come.  The mountains she would move.  

Strange thing though?  I kind of get the feeling she's already moving them.

Evie Update #20

Well...do I have a story for you....

My 4 Facebook posts, with a combined 172 "likes" and 163 comments are a pretty good indication that social media works when you need to spread the word!  Believe me when I say that I saw, and read and smiled over every well wish - when stuck in the SickKids vortex it's really great to know there are people, and lots of them, on the outside thinking about us. Believe it or not, not everyone is on Facebook (Paul included), so here is a little explanation of what has happened.

Over the past month I have noticed Evie complaining about headaches.  Nothing overly serious, but every now and then it's come up and seemed to be a bit more earnest than some of the other things she complains about.  I generally give water, rest and if it persists would offer tylenol - but it's never come to that.  Time and Hydration have always seemed to work.  As January was booked full of follow up appointments, I noted down headaches and let her team know.  These headaches starting out fairly innocent, got worse near the end of the month.  On two occasions they brought her to tears, but again seemed to pass within 10-20 minutes.

Last weekend Evie woke up and wasn't well.  She threw up, and then slept all day.  So now, with a brief history of headaches, and vomiting in the morning after waking (both being notoriously bad signs for brain tumours), we took precautions and kept her home from school. And then for two days she was fine.  Last Monday and Tuesday, she was her normal self: no school, but therapy at Holland Bloorview, playing with toys, watching iPad, playing in the snow.  Nothing unusual at all. 

Wednesday morning was a different story.  Evie was not well, and was in a cycle of sleeping and then waking and vomiting almost instantly. I was told to bring her into the ER where she would be assessed and likely have some imaging done.  I spent the day there with her, and by 7pm that evening she was being admitted by the NeuroSurgery department.  Over the course of the day they had given her a CT, bloodwork and a shunt series X-Ray.  It was suspected that her shunt was malfunctioning.  We were told to expect surgery, either that night or the following morning. 

Thursday morning I woke to the entire NeuroSurgery team on their rounds, and was surprised and upset to find out the plan that day was to "observe".  Her imaging showed a potential problem, but it "didn't seem to be emergent so we're going to keep an eye on her symptoms today".  It sounded to me like it wasn't bad enough yet to fix...and I was right.  Over the course of the day though, it got worse.  Evie slept all day...very much like how she was 2 years ago.  She was awake for a few minutes at a time, and in those minutes was in a lot of pain (headaches).  That evening it was decided that she had declined a considerable amount and they no longer wanted to wait to operate.  Evie went into surgery that evening. 

I'm happy to report that surgery did the trick.  Evie's shunt was malfunctioning, and once the "broken parts" (if you will) were replaced, her symptoms simply went away....just like that.  By Friday morning she was tired and sore, but no longer suffering from excessive sleepiness or headaches. She had her routine MRI and an additional X-Ray, and aside from that we spent the day quietly recovering.  On Saturday afternoon we were handed our discharge papers.  What a whirlwind. 

We're home now and have had a quiet weekend.  It's a little strange to see how fine Evie is...if you saw her, you'd have no idea how bad it was just a few days ago.  I was talking to her today, and showing her some pictures and she really doesn't remember Thursday.  She remembers throwing up, but not the sleeping.  I had to explain she had surgery because she can feel the shaved patch behind her ear.  This is one thing I'm not used to actually...explaining to her.  Evie has always been so small, I never had to explain to her very much about her treatment.  In the last year, I've had to a lot more, and clearly it's only going to increase in the future.

It feels weird to update you otherwise, but as I said, January was full of follow ups.  She had a blip with her endocrine appointment and now requires an additional medication from them.  She also is currently back at Holland Bloorview.  She is getting therapy once a week to work with her Occupational Therapist on some "Developmental building blocks".  There is a bit of concern with her learning, not uncommon for kids with all of her medical history.  Thankfully Evie just loves "Bloorview school".  It doesn't hurt that I arrive early so she can play in the playroom!

...and that kind of sums it up...

Thanks again for your support.  We have always believed it takes a village, and it's just so reassuring to know we have so much support behind us.  Evie is taking a week off of school as part of her surgical recovery (and our lack of faith in the 20 other kindergartners), which means we will have a quiet week at home together.  I've included some pictures: Evie on Thursday (her excessive sleepy day), just prior to surgery, Evie on Friday morning, only 10 hours post op, and Evie today playing in the snow in our backyard with Isabelle.  I repeat: what a whirlwind.

xoxo,

Paul & Kristine

Isabelle and Evie

and though she be but little, she is fierce