normalcy... and asher's normalcy...

ok, ok, i know i need to post more often. i know.
but the thing is...


I.
asher's been stable.
and normal.

he's eight years old now.
eight.
seriously.

he's back at school.
grade 3.
but he still asks to be homeschooled again.

he still loves his stuffies.
current faves are Bjorn, Bjorn, and Bjorn, the swedish mice.
(my dad bought him three mouse stuffies at ikea. hence swedish. haha)

he has a favourite sport:
golf.
it's a sport he can actually do.
and he'll get some lessons this summer, and he'll be awesome.
there's quite a bit of power in that swing of his.

he doesn't like chocolate (whose kid is this?!).
he loves coffee and wishes i'd let him drink it.
yesterday he complained that there were no baby carrots for his lunch.

the other week, he made a lunch for school that consisted solely of M&M's and a cookie.
i was not impressed.
but i was amused.

he runs and plays and laughs and jokes and winks and runs and snuggles and giggles and talks and runs and loses his temper and plays with lego and hugs his stuffies at bedtime and runs and smiles and wishes his skeleton bedspread glowed in the dark.

ah, normalcy.
it doesn't make for a thrilling blog post, i'll admit.
but it sure makes for a wonderful life.


II.
we've spent too much time in emerg lately.

five or six trips last month.
all for the same thing:

asher is having blue spells.

his sats don't change, his blood pressure doesn't change, his bloodwork doesn't change. his mood doesn't change.
his chest xray is perfect.
his mood is bright and bubbly.

his face is pale.
his nose and mouth are blue.
his forehead is grey.

his hair is damp with sweat, and he's short of breath.

cardio said, "this is normal for fontans. they turn blue all the time."
i said, "if he'd been doing this all along, i'd accept that. but he hasn't had a blue spell in years. literally, years. so i don't accept that."

they did an echo, and i haven't heard anything, so i'm guessing it didn't show anything unusual.
(which, if you recall some of his history, can mean very little.)

now we have a cardio memo (cardiac event recorder) that he carries around till early June.
he's to place it on his chest and record his heart when he's having symptoms.

i'm not sure if i hope it shows something...
or if i hope we're wasting our time.

i mean, things have certainly been worse in asherland. i'm the first to admit that.
but...


III.
it's january 2009.
asher just had a stent placed in his ASD a week ago.
we're at the cardiology clinic at HSC (SickKids).
i ask our cardiologist, "so... what can we expect...  you know... long term?"
she answers immediately, "oh, he'll need a new heart by the time he's ten."


IV.
asher is eight.
almost eight-and-a-half.

asher is having blue spells.

and i'm trying to keep my mind from wandering to dark, unhealthy places.

because yeah, he had two blue spells before 9:15 this morning.

but he felt nothing.
and he resumed playing right after the memo.


*************

and a quick update about the rest of our lives:

Blithe's in grade 7 now.
she's fairly obsessed with acting, and she loves make-up.
she's smart, and compassionate, and believe me when i say,
she's the strongest woman i know.
she's 12.
turning 13 in august. (WHAT?!?!?!)

Bram's in grade 5.
he loves acting, and reading, and Simon & Garfunkel.
he's loving, and kind, and serious, and very very smart.
he has the sweetest soul i've ever encountered.
he's 10.

I'm not in a grade.
i'm still working as a make-up artist,
and i'm still obsessed with theatre.
i'm starting out on a new part of my journey, and it's exciting.
sometimes i miss homeschooling,
other times, i enjoy the freedom to have lunch with a friend,
or... say... sit in a coffee shop and write a blog post. ;)

beyond that, there really isn't much to report. i still love coffee (nectar of the gods, black liquid of life, call it what you will. it's beautiful), the house is still a mess, and we all love sushi (possibly more than life itself).

so, now you're all caught up. some exciting normalcy, some worrisome symptoms, but all in all, we're doing well.

and i promise to post more often.

OOOOH! and i now have the blogger app for my phone! so yes, i'll be posting more often!! you just might get sick of me, actually. MWAHAHAHAHAHA!!

well, our streak has come to an end... but now we get to start over! tomorrow is Day 1. ;)

that's right, folks, it's been a delightful 13 months, but as they say, all good things must end...

asher was admitted to hospital last night.

now, before you panic or get upset or worry (haha!!), it was just for observation and we've already been discharged, so it's all good. {thumbs up} here's the deets:

yesterday morning at church, asher was... um... how shall i put this... asher was being asher-ish. which actually says quite a bit for those who have been around for a long time. haha but for those who haven't...

asher spent the morning trying on all sorts of funky shades of blue, and a bit of grey thrown in for fun. oh, sure, he had his pink moments, but for the most part, he was blue and/or grey. he was also dizzy and lightheaded and kept saying that his "ears feel like day have cottonballs in dem." i'm pretty sure there were a few times that his ears were full of that rushing sound, because there were a few times that i'd look at him and he just wasn't focusing on anything and he wouldn't respond when i spoke to him. (i know what some of you might be thinking, but i doubt it was seizures. i might suspect that if he hadn't had the other symptoms, but given everything altogether, i'm going with the rushing sound.) so i called our paeds, hoping i was being paranoid, and whether i was or not, she said that he should be checked out when we get home. so, it wasn't urgent. yes, he needed to be seen, but not right that minute or anything.

anyway, we got home, ed picked up blithe and bram, and asher and i headed off to emerg. his triage vitals: HR 81, sats 93%, BP was 100/60-ish... his norm, anyway. but those sats... ugh... his normal is - believe it or not - real normal, sitting between 96 and 98%. lately, though, he's been 92 to 96%. not a huge drop, but i don't like it. i'm actually kind of glad we'll be seeing respirology. speaking of which... oh, wait, i'll get to that...

ok, so they decided, based on the number of blue spells etc that asher should be admitted. just overnight, and just for observation. no biggie. still sucks, but it's ok. close to home, just for one night, and nothing major planned. just a regular admission.

overnight, he was good. no major episodes... some hints that he might change colour, but nothing substantial or concerning, really.

there was a little bit of excitement this morning, though. ash and i were going to head down to the playroom, so i put a sat probe on him (doctor's orders)... he was a delightful 93%... and his heart rate was 74. i know what you're thinking: isn't he set at 80?!


yup.

so he had an ecg and yup, 74 to 77 bpm... paced. wha-?! but dr b sent a copy of the report (from a regular ecg and a 10-second test) to cardio in london. cardio said that it looks like the pacemaker is working well and they're not concerned. "so, it's ok for him to be sitting with a heart rate in the 70s?" apparently, it is. {shrug}

a couple other points of interest: asher's chest xray from last night looks a little bit like he might have RSV. again, wha-?! but this is asher, and even though he's a little old for that (and it's summer!!), that might be what's going on. either way...

respirology was consulted. they are going to rush him in (resp doc is off during the first week in july. she's going to make sure he is seen during the second week in july). she is also booking him for a lung CT. apparently, there's a 1-month wait for that test, so if she books it now, it will get done as quickly as possible. and this way, if asher doesn't need that test, it can just be cancelled and no harm done.

in the end, we came home around 11 this morning.

it's good to be home, i gotta say. yes, it sucks that his streak has come to an end, but it was great while it lasted, and it was just for an overnight admit for observation, at our local hospital instead of children's or sick kids, so i'm happy. :)

besides, i didn't have to cook! can't complain about that, if you ask me! {wink}