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!!

a normal, hum-drum kind of miracle

something very strange has been happening around here lately...

Asher is growing up.

he's six-and-a-half now; he'll be starting grade two in september. and in december, he'll turn seven.

seven.

WHAT?!

i know. i can't believe it, either. *shakes head*

this time two years ago, i couldn't bring myself to say, "in a few months, he'll turn five." i suppose this is what "stable" feels like...

what normal lives like...

he was sitting next to me the other day, as he often does. he was playing on the computer, as he often does. and something about him in that moment...

he was playing with Bram the other day, as he often does. they were planning out lego star wars attacks on lego batman goons, as they often do. and something about him in that moment...

he was helping with grocery shopping the other day, as he often does. he ran ahead to grab the milk, as he often does. and something about him in that moment...

i caught a glimpse of him, as he will be

when he's older

when he's grown

when he's a young man.

and in those moments, those massive, insignificant moments, my breath caught in my throat, and i couldn't move, and i couldn't speak, and i couldn't take my eyes off him. there was such magic in those moments.

in the ordinary, everyday, inconsequential miracle of those moments.

in the day-to-day, ho-hum of life.

and in the living room, and in the play room, and in the grocery store, i knew

i knew

that Asher just might make it.

he could grow up, and live an ordinary life, and have a job, and drive a car, and break hearts date girls, and follow his passions, and make dinner, and tell stories, and hang out with friends, and drink coffee, and fall in love,

and change the world

and change a life

and live his life

however long that may be.

and it will be long enough,

however long it may be.

because, as he sat there, playing on the computer, he had no thought of his heart, no thought of his scars, no thought of his doctors and surgeon and appointments and hospital admissions and feeding tubes and meds and pacemaker.

he just wanted to beat that level of Candy Crush Saga (don't we all?). he just wanted Batman to destroy Darth Vader (for obvious reasons). he just wanted to help with shopping (because he's like that).

and this is what his life is now, and this is what his life will be like (for) now, and this is what normal life is like

all the time

for everyone.

each of us lives this kind of ho-hum, ordinary, day-to-day miracle.

the best kind of miracle.

the normal kind of miracle. when you go to sleep at night, and you wake up in the morning, and go about your day, and go to sleep at night, and wake up in the morning, and go about your day, and so on, and so forth.

that's Asher's life (for) now. and it's kind of amazing.

because it really, really isn't.

*****

i'm sure some of you are wondering what we've been up to since i last posted here. i'll post more about that on My Simple Life later, but for now, here's the Coles Notes version:

• we're homeschooling. (and Asher has been remarkably healthy since i took him out of school, so i really believe this is best for him.)
• like i said, he'll be starting grade two in september, Bram will be doing grade four, and Blithe will be in grade six, and i'll be having a mid-life crisis, because i'm not ready for any of them to be this old.
• i've started doing make-up, mostly for theatre, but also some bridal, and photography, and video. i'll be doing a couple book covers in the next couple weeks, followed hard upon by a show called DREAM, which is a re-imagining of Shakespeare's A Midsummer Night's Dream.
• Blithe has joined the music and drama teams in the kids' section of our church, and she's doing very well with that, especially the drama. that girl can act!
• Bram is obsessed with all things Lego.
• Asher has mastered an english accent, and uses it sometimes when he's telling stories that have more than one character.
• and the house is still a mess, and i still love cooking but not baking, and we still have two cats.

and there you have it. you're now basically caught up on our lives now. haha! i'm going to post more often here again now. i'll warn you, though: don't expect too many pictures. i wanted to share one with you today, but Asher didn't want me to, and since it's his blog, i will respect his wishes there. but seriously, he's so grown up, you probably wouldn't even recognize him! and holy cuteness!! i mean, i know i'm biased, but seriously! adorable!!!

anyway, that's it for now... talk soon! promise.

WOW!!! has it really been 2 months since i last posted?! CRAZY!!!!!

i can't really explain why it's been so long since the last post. not a whole lot going on, i suppose. just regular, normal life stuff, i guess, and really, who wants to read about the days passing in their swirl and whirl and swing and song... that's what My Simple Life is for (please don't click that link yet, lest you see how long i have neglected that blog, too! HAHA!) ok, on to the post!..

like i said, life has been moving along fairly normally over the last couple months, which has been delightful, to be honest. sure, there's been some blips, but nothing that had me in a tizzy or running to the blogosphere for support, so i think it's ok. ;) so i'll give you a bit of a recap:

the kids started back at school, and they're enjoying it. blithe is in grade 4, learning french now, and loving every minute of it. her goal for this year is to get A+ in every subject, and to get into a special arts school in the area for next year. :) she has been really enjoying being on the music and drama teams at our church. she's really blossoming into a beautiful person, and i'm really proud of her.

bram has started grade 2, and seems to be doing fairly well. his reading is really improving, and he's really working hard on focusing and paying attention. his goal for this school year is to "get the exact same grades as last year." his sense of humour, his gentle spirit and love of life are really endearing and inspiring. and in case you're extremely curious, yes, he still has a mohawk. he lets me shave the sides, but not the mohawk itself, which he also won't let me spike. his hair is now almost as long as blithe's at the front! just another one of his little quirks which make him so lovable.

as for asher... well... he's back at school, in senior kindergarten this year. he has the same EA (educational assistant) as last year, which is wonderful. we've all really enjoyed working with her, and asher thinks she hung the moon, so we're all really pleased about that. asher has a different teacher this year, which admittedly caused me a bit of uneasiness initially, but after speaking with the principal and after seeing how asher is doing in school, my concerns are all gone and i'm really happy with how things have gone thus far.

with one exception, which actually has nothing to do with the school itself. asher has already missed about half of the school year due to chicken pox. not that he had them, but in an effort to keep him as healthy as possible, we want to minimize his exposure to these viruses and illnesses. so, home it was for the littlest man. and while i really enjoyed getting to spend so much time with only him, it is so sweet to send him to school, to let him enjoy time with other kids his age, to study butterfly life cycles and learn to read and paint and play at the water table and so on. i am so thrilled that he has this opportunity.

he, however, isn't always so thrilled. i know that, once he gets to school, he enjoys himself and has a great time, but he's really beginning to notice that he's different than other kids. he knows they don't have pacemakers. he knows they don't have EAs. he knows they go to gym. he knows they don't ride on a special bus. he knows. what he doesn't understand is that all of this is to protect him and keep him healthy and safe and give him the best possible school experience, and that we all work as hard as we can to give him as normal a life as possible. he doesn't understand the risks. or he does, and he doesn't like them, so he wants to pretend they don't exist. either way, it's hard to explain to him so that he accepts the situation for what it is. and what it is, is a lot of people who care deeply for him doing everything they can to give him a full, beautiful, Love-filled life. one day, he'll understand, and this, too, shall pass, and we'll get through. we're all aware of his PTSD and other emotional issues.  but when he's crying in the mornings because he doesn't want to go to school, that's really tough on me, especially. but this morning's tears only lasted about 15 seconds, so i'm hopeful it's getting better. when he's been in school for a while, he does better, but since he's missed so much this year, it's rough. he'll adjust and get back into the swing of things, too, and that will help.

as for us as a family, we are now official members at the Y, and we have been enjoying this thoroughly. the four of us go swimming at least twice a week (we try for three, but it doesn't always work out), and we're loving that! we're all in better shape, we're happier, and the kids are all becoming increasingly comfortable in the water. monday afternoon, we went swimming together. blithe and bram put on life jackets and swam all over the pool. asher, who grabbed himself a floaty-belt (don't remember the real name for them LOL), clung to me most of the time. in fact, he's attached to me every second that he's in the pool. but on monday, he relaxed a little, and actually held onto my outstretched arm, put his feet out behind him, kicked, and "swam" while i walked around the shallow end. he's making so much progress in the water! i'm so proud of him!!

blithe is taking Creative Dance, bram is taking Tae Kwon Do, and they're both enrolled in swimming lessons. i had thought of putting asher in swimming lessons, too, until... we went swimming together... and he had an absense seizure on the stairs. while i'm holding him in the water, there isn't a whole lot of risk. but if no one is holding him, and he's in the water, and that happens... yeah. he's not in swimming lessons. :( but i figure, if we go often enough together, he'll learn on his own. he may never be the most fantastic swimmer, but he'll do well enough. his endurance is getting better now as a result of this activity, so who knows. the seizures don't happen very often, so maybe in a few months, once i'm a little more comfortable, i'll sign him up again. because, to be honest, it was his first seizure in several weeks, and it had been a while before that, so i'm probably being overly-careful right now. but this is a new situation for us, so i'm holding it as "caution" and not "paranoia." haha we'll just wait and see how this goes for now, and just have fun all together, like we're doing. :)

um, what else has been going on around here?... well... i had been working quite a bit over the last few weeks while my boss was away on vacation, so that was good. exhausting, but good. i also took some giant steps to pursue one of my dreams. i was the "make-up designer" (that's what it says in the program above my bio!! yes, carrie, i have an extra copy, if you're interested) for Tuesdays With Morrie, which was put on in London last week. it was a beautiful production, and every show got a standing ovation. it was an incredible experience, i can't really say enough about it, and i'm thrilled, honoured and humbled that i was given the opportunity to be a part of it.

ok, now that you're all caught up on the normal real-life stuff...

asher had two clinics yesterday: nephrology and gastroenterology. nephro was awesome! as for gastro... well... nephro was awesome!!! ok, it's not that gastro was terrible. just a bit discouraging. so i'll cover it first, and then we'll part on a renal high note, shall we? (wink)

so, we saw gastro because asher is still suffering from chronic GERD (aka reflux, aka heartburn). it is bad enough that he actually says it hurts and prays that God will "help me feel much better." yeah. he's on meds, but they are really only dealing with the heartburn itself and i'd rather address the cause of the GERD, to be honest. so, off we trekked to the clinic.

what began as "simple" GERD (in quotes because, well, it's asher we're talking about, so "simple" is relative) became GERD with chronic constipation. now, since asher has potty trained, i'll admit, i don't keep track of his BMs. but... when doc asked how often asher poops (hey, it's gastro. what do you expect?! haha!), i stopped and thought about it, and i realized... asher rarely poops. and i mean... maybe once every few weeks. and then i started thinking even more... that would explain why asher doesn't eat much... and probably why he doesn't gain weight very well... and doc reminded me that, if he's full of poop, everything gets backed up and there's nowhere for the stomach to put anything, and that causes more reflux. i reminded him of the vagus nerve damage asher had had, which i believed had healed. but he confirmed that the vagus nerve could still be a factor, since it enervates the esophagus, and if the esophagus isn't getting the signal to send things back down into the stomach, reflux will be a chronic problem.

and the longer i think about this... asher has had issues with his esophagus from the get-go. he had a swallow study done when he was 4 weeks old, just days after being discharged from SickKids the first time. they found a total lack of swallow reflex. sure, stuff went down, and he wasn't gagging very often, but we all watched as the formula (the thickest formula) just kind of spilled down his throat as opposed to being pushed and prodded by the muscles. i mentioned to him that resp had done a CT scan recently and they had found "stuff" in his lungs. this might be due to infections or something, granted, but it's also possible that asher's throat issues have not, in fact, cleared up as well as we'd thought and this is, in fact, evidence of aspiration. sigh...

he prescribed increasing asher's lansoprazole to twice daily, which should help, but again, doesn't address the cause of the GERD. he also recommended a laxative, which might help, as well. if everything is cleared out and keeps moving (the laxative would be an on-going thing), we hope to see a decrease in reflux and an increase in appetite. so, we go back in january for follow-up.

the other issue that came up was one that i have actually wondered about idly over the last couple months: celiac disease. doc seems to think it's a possibility, but he would like to investigate the other queries first before looking into a radical life-style change. which i appreciate. haha but i just might begin working some gluten-free foods into our diet over the next little while, in case this is the issue, and then the change won't be quite so dramatic.

all that being said... as we were walking to the desk to book a follow-up, doc asked, "has asher ever had a study done to see how things work in there?" i told him about the swallow study at four weeks, but there really hasn't been anything further since then. he thought for a moment, then said, "sometimes kids with congenital heart defects can also have a twist or malrotation in their bowel. when he got his G-tube, did they look for that?" i said, "not that i know of. no one said anything to me about it." he is going to be talking to Interventional Radiology (they're the ones who put in the GJ-tube and then changed it to a G) to see if they ever looked, or noticed anything. if they haven't, we're going to look into this right away.

so, what started as "simple" GERD has become something much bigger. and my heart hurts a little bit more today. :( i know it's not the end of the world, but things had been going so smoothly, and then to find out that he might have further issues just leaves me feeling sad. so prayers/vibes/crossed crossables would be very much appreciated.

and now for something completely different.

after gastro and a quick trip up to Tim Horton's (we hadn't eaten all day - stupid ultrasounds! haha), we saw nephro. asher's BP was low by all standards except nephro, because they like low BPs (81/55, anyone?). they say that's "perfect." ok... i'm going with it, since there really isn't much you can do to make his BP go up, so whatever. haha doc looked over the ultrasound from that morning and said, "wow! this is dramatically improved over last time! if you didn't know to look for anything, this would be taken as normal!" i picked myself up off the floor, resisted the urge to hug him, and said, "really?!?!" apparently, there is a small cyst in the left kidney, but it's been there all along, apparently, and hasn't changed size, so doc's not worried about it. in fact, i suspect he would have discharged us completely but for the UTI asher had a few months back, so we go back in a year. that's right, 2012!!!! i don't remember the last time i was so happy leaving an appointment!!

so, to recap, gastro was upsetting but eye-opening and at least we have a plan, and nephro was AWESOME!!!!

and now you're caught up.

have a wonderful day today! i'm so sorry about the length of this post. i'll try to post more frequently to avoid posts like this in the future. :S

you are Loved.

wow, where do i even start?!

it's been quite a month around here...

um...

we met with our CCAC case manager who was, in a word, the best CCAC case manager i've ever met! so nice, so helpful. she actually listened to me, and she offered supports and services that no other case manager i've ever met has offered. simply incredible! total gift!

she set us up with a social worker. actually the social worker was here this afternon. she is so nice. she's going to look into things like respite care for asher, a YMCA membership for the kids and me, some funding, and she offered to come with us next Tuesday for our respirology appointment. how wonderful is that?!

in fact, over the last month, it's just been one blessing after another. it seems like every day God shows up and dumps goodness onto us. sure, asher's still sick. his energy level is decreasing, and he's occasionally short of breath for no reason or with very little exertion. so yes, that sucks. but let me tell you about a couple other things that have come about that i would never believe if it weren't my life!!

• i'm going on vacation. much needed, i might add. i'm going to florida for five days in february with some friends. and we're all leaving our kids at home. i'll admit, i was an emotional mess a week ago, but once i decided to do this, i haven't cried nearly as much, i've been able to cope with life's little challenges... just knowing that while all you suckers poor saps walking popsicles gentle readers who live north of the border or in other winter-prone locations are shovelling snow and shivering and complaining that you're out of marshmallows and how can you have hot chocolate without marshmallows this isn't cool for the love of everything holy and good this isn't cool!!!!!!!!!... i'll be in miami, sitting by the pool with a book and window shopping with the girls. i can't wait!!! i haven't been on vacation since before blithe came along, and before that it had been... wow... years. so yeah. i can't wait!!!!!!!!!!!!!!!!!!! {happy dance}
• yesterday after church, i was chatting with a friend. i was telling her about our upcoming appointments and how nervous/scared i am... anyway, yesterday evening, her husband, one of the pastors at our church, saw that i had posted asking if anyone would care to join me on friday morning while asher's in having his CT. he, then, posted this on his profile:  There is a mom in our church community who needs someone to sit with her at the hospital while her son undergoes tests this Firday- if you are available please contact Heather Heywood I know that she would appreciate it very much. i kid you not, within five minutes, a friend offered to join me and she will be the coffee wench and we shall drink coffee and i shall not worry about asher being put under to undergo a test that could very well lead us to yet another horrible diagnosis. anyway, the whole point of this is... community. it's such a gift. and as i said on FB yesterday, the support that the kids and i have received has been overwhelming and humbling and beautiful and the picture of grace and Love. 

um, i can't really think of anything else going on in our world right now... blithe and i picked out her outfit for the first day of school, and let me tell you, this girl has some kinda style. also, we're trying to figure out where to go on a wish trip... so far, the choices are "wal-mart and mcdonalds," the island of sodor, take a train to toronto and take the subway to a hockey game, or disney world. so far, wal-mart and the hockey game are winning. HAHA

so that's the world according to asher... as told by me... for today, anyway. haha 

you are Loved.

so much sweetness

today i let the morning routine slide. (yes, i know, it's only day 3, but i think it was worth it. teehee)

i got up a few minutes late, but i got dressed. came downstairs, took the fresh loaf out of the bread maker, poured myself a cup of coffee that had already brewed (mmm... programmable coffee maker...), and started pondering lunches.

i went upstairs to check on asher, who, unlike blithe and bram, was still asleep.

soundly.

lying on his back, sprawled out across his bed, mouth open with his sucky dangling precariously from the corner of his lips.

i stood there and watched him for a moment or two...

and let him sleep in.

blithe and bram got ready for school, and i watched them walk to the bus stop. they're so delightful, you know? they walk along, so young and fresh and yet also somehow so grown up... blithe has her uber-girlie walk, and bram with his little man gait. they were chatting and laughing and waving to me when they looked for traffic before crossing the street. and they got to the bus stop and chatted with their friends.

i went back inside and went upstairs to check on asher again.

he was just climbing out of bed, his crazy hair all crazy messy, sucky securely popped back in his mouth, and he flashed the brightest smile when he saw me come in the room.

i got him out of his grinch pj's, and helped him pick out his outfit for the day, and he told me all about his cozy and comfy and warm socks that he picked out a long time ago.

as he walked into the bathroom, i marvelled that just a couple months ago, he was still in diapers, and now here he is, completely potty trained.

i watched him put on his rubber boots on the wrong feet, and smiled.

i offered to help him put his jacket right side out, but he ignored me and kept working on it until the sleeves were right. he put it on by himself and made a zzzzip! when he pulled up the zipper.

he tried to open the front door, which i then unlocked, and he walked outside and waited on the porch while i locked the house.

he climbed up into the truck and plopped himself down in his car seat and chattered away while i buckled him in.

off we went to school, and we held hands as we walked through the front doors and down the hall to his classroom. he showed me his pictures on the wall and door, and told his EA all about his hospital dolly.

and as i left him there, i thought,

how is it possible to be blessed with just so much sweetness in my life?

and i smiled.

christmas 2010

yes, this post is late, and no, i don't have any pictures. :( i've lost my camera, which makes me very, very sad. so you're just gonna have to imagine all that i'm going to share with you. which is, without a word of a lie, miraculous.

the kids and i were gifted with the most unbelievable christmas ever. "santa" came. and stayed until "he" had delivered 3 garbage bags full of gifts. the boys got all the transformers they had asked for and batman pyjamas (complete with cape). asher got a new elmo stuffie, an elmo watch, elmo duplo, elmo play-do, and more that i can't even remember, there was so much stuff. bram got lego galore - pieces, kits, and books - and again, a ton other stuff. blithe got all things bieber - sheets, singing doll, book, CD. she got a lalaloopsy doll and an easy bake oven. and again, there's more. literally, everything they asked for. ever single thing.

for the four of us, we were given 8 movie passes, snacks for our nights out, and 2 free blockbuster rentals.

i got more for this christmas than i have received in at least the previous 3 years combined. i don't usually ask for much, a couple little things, and that's it. i really don't need anything. i got gift cards for chapters and starbucks and shoppers (my happy places, in case you're wondering, haha). i got a beautiful card and note from "santa" (which i now carry in my new purse from the kidley-winks). it was...

stunning.

we were also given 6 boxes of dry goods for the panty, and grocery gift cards. so i don't have to worry about that for quite some time. i can't tell you how much that helps us.

and then there's the stuff from my parents, my brother and his girlfriend, and the beautiful picture of my grandparents (my grandfather passed away in October 2009, while asher was admitted with H1N1). everyone in my extended family (other than one of my uncles and his wife) were at my grandmother's for brunch, including my aunt's husband and my cousin's husband, who got the day off work for the first time in over four years. everyone was there, and it was beautiful and loving and warm and joyful. truly miraculous.

i was also blessed with the opportunity to gift one of my aunts with something small (but very cool... she's lucky she got it, since i loved it so much, haha), and a note which made her cry (in a good way).

this was truly the most beautiful christmas i have ever experienced, and i am holding this close to my heart.

i hope your christmas was just as beautiful as ours was. i hope you experienced all the love, grace and peace that is the spirit of this holiday.

the times, they are a-changing

well, asher is stable now. it has been over 5 months since his last admission, and even last month when he had that little "hiccup" he came out of it quickly and on one less med (leaving only aspirin!). so, yeah, he's stable now. kinda weird, no?

not that i'm complaining.

anyway, since asher is doing better now, i knew that it was time for some things to change around here. namely,

i can get a job.

so last week, i began sending out my resume. and on wednesday this week, i went out around town, handing out resumes and applying for jobs. i wasn't picky. so out i went.

the first place i went to, i asked if they were hiring, and lo and behold, they were! in fact, the woman asked me right then and there if i could come in for an interview the next morning.

that's right, folks, the first place i went to invited me back for an interview.

so i went for the interview the next morning. my first interview in about 9 years. and guess what!

i got the job!!!

so i went for my first day today. i'll admit, it was a bit weird. and i'm exhausted. but it was good. and i enjoyed it. yes, at the end of my shift i was very ready to go home. i haven't had an actual job since my contract with the Canada Games ended in august 2001, so this whole working thing will take some getting used to. but i'll manage with all that.

as for the kids... yeah, it's going to be an adjustment. for all of us. the hours at my new job aren't great, so there will be a lot of child care involved, but we'll get used to it, we'll adjust, and we'll get through. and we'll be ok. blithe prayed last night,

God, please bless mommy in her new job. please be with her and help her, and don't let them make her work too hard, because i don't want her to work too hard. please be with her on this journey. and please be with me and bram and asher on this journey, too.

yes, those are her words. we're all excited about this new turn in our journey, even though it's scary. but blithe knows... God is going through this with us, and we're not dealing with it on our own. so we'll be ok. i told the kids last night, "we'll get through. we'll adjust, and we'll do what we have to do." and bram agreed just as loudly, shrill-ly and enthusiastically as you would expect. asher just kept playing with chicky and elmo-y (who is not, in fact, the Elmo, but rather a yellow bunny). blithe said from her room, "yup! because that's what the heywood family does, right, mommy?"


anyway, i thought i would update you on the goings-on over here, even though they have nothing to do with asher's health. but it's all part of our journey as a family. if you wouldn't mind, please pray for us in this new part of our journey. it's unfamiliar territory we're treading here, so any prayers, good vibes, crossed crossables would be much appreciated.


and since you're praying/vibing/crossing...


don't forget to keep praying for shawna and her family. they need it.


also, little ella in australia, who had a stroke the other night. she is still in the hospital. and not only is it a hard time for her, it is really hard on her mom, shannon. she is heartbroken. please continue to pray for ella, shannon, and dad neil.

crystal balls, looking back, and the unanswerable questions that break my heart

a friend of mine has a blog about parenting a medically fragile child. her daughter's condition is different than asher's, but our journeys as mothers have often been very similar. and so her post today broke my heart. i'm not going to summarize it here; you can check it out for yourself, if you're interested. but i want to share my reactions to it. and please know, i don't always think about these "unanswerable questions"... in fact, i very rarely do. i know that i don't know the future and i'm ok with that. except today, it would seem. but it's part of the journey, so i'm sharing it.

when a family has a special needs or medically fragile child, suddenly, the entire family dynamic changes. in every imaginable way. we went from "ed, heather and the kids" to "asher and heather... and aren't there some siblings in there, too?" since 10 december, 2006, my life became centered around asher. asher became my identity. even my email addy is "wonkyheartmom" for crying out loud! his wonky heart became my wonky heart.

as for blithe and bram... sigh... (please bear with me in this post. my heart is breaking and i'm in tears, so if there's typos, it's because i can't see them.) it's like there are two sets of children in my life now. there's asher, and there's "the kids." and "the kids" are blithe and bram. yes. they're separate. when asher is in the hospital, or he's in emerg, or he's sick at home, i need help with "the kids." and that never means asher. that means blithe and bram. i mean, think about it: people ask me all the time how asher is doing. occasionally, they'll ask how i'm doing. rare is the person who asks about blithe and bram. and by "rare," i mean, i don't remember the last time someone asked about them. here's just two examples: a book is being written about life with a single ventricle kid, and ours is one of the families being "showcased" (for lack of a better term). the authors wanted to know about asher and his parents. the kids? mostly overlooked (because we did discuss them, but not in depth). and when i was asked to share at church about our journey, they asked about asher and me. again, there was no mention of blithe and bram, other than that i have three kids. i'm not blaming anyone here; it's natural to focus on asher, because his part in this is so obvious and dramatic. but still... i have two other kids whose stories don't get told.

and how have blithe and bram responded to all of this? generally speaking, they deal with all of this wonderfully. a SN/MF mother's dream. they are strong, joyful, resilient, compassionate. they just roll with it. "asher's in the hospital again? hooray! that means we get to spend time with nana!!" but then i wonder... you know... in the bigger picture...

blithe knows way too much about asher's condition. and i don't just mean that she knows about all the defects in his heart and she can tell you about the surgeries and she can find the aorta on a picture of a healthy heart (b/c there isn't one on the picture of asher's heart, and she knows that, too). i mean... she knows. she knows he's fragile. she knows that there is no medical explanation for why he's still here. she knows that he could pass very quickly, with very little warning. as for bram... he was so young when asher was born, to a large extent, this is the only kind of life he has ever known. the instability and unpredictability and stress and chaos and unknowing. up until the other week, he assumed that when he was asher's age, he had all kinds of scars on his torso, too.

and then there's the non-asher factors that go with this life, which are inextricably intertwined with the journey. asher's care is expensive. so um... yeah. i'm usually broke. and the kids know that. we don't get to buy new clothes very often, and when we do, they're not super cool. they're super cheap. we don't get to eat out very often. a full tank of gas is a luxury. the kids are aware of this. they don't get the cool toys that they see advertised on TV. nope, they have to make due with the same broken toys they've had for years, unless their dad buys them something (which is also nothing expensive). i mean, seriously, right now, asher needs a new pair of everyday shoes. and can i buy him a pair? nope. he's just gonna have to make do with these shoes that don't stay on his feet, because i just don't have the money for a new pair. as for groceries... the kids don't get lunchables or special treats, they don't get their favourite cookies. they get homemade cookies. and sandwiches on homemade bread (other than today, because my mother bought a loaf of bread for us on saturday)... i'm not trying to say we're starving or anything; they're fed, don't worry. but my point is this: the kids have to sacrifice a lot.

and it's not just sacrificing material things, either. as joyful and gracious as blithe and bram both are, there are those tell-tale markers of this life: they both struggle a bit with anxiety. granted, some of that is genetic. but it doesn't help that they have very little control or predictability in their lives. i'm working on getting some sort of routine now, but it's hard. we've been without it for so long, i feel like i have no idea how to do that anymore. but even developing a routine now is a huge change for them, and that causes them stress.

the point i'm trying to make is this: having asher in our lives has been very difficult. yes, it's wonderful, he's an amazing boy, and i love him more than i ever imagined i could ever love another person, and he is a gift and a blessing in innumerable ways. don't misunderstand me. but... sometimes...

and i'm just being honest here...

i ask myself, "if i could go back, knowing what i know now, what would i have done?" if i knew the cost to us as a family, if i knew how he would suffer, if i knew how blithe and bram would suffer...

would i change anything?

and again, i'm being honest here.

knowing what i know now, both about the condition/treatments/odds/etc and about the life itself,

i would still have made the same decision.

but i would not have brushed off some of the options quite so quickly. i would have at least entertained the thought for a few minutes, instead of snapping at the cardio. i would still have chosen the hybrid. i honestly would not change a single thing that i have done over the last nearly 4 years. but i would have given more thought to the impact of my decision on the other kids. again, i'm not saying that i would have chosen comfort care. i wouldn't have. it's not mine to decide how long another person lives, so i wouldn't have chosen that. i would still have chosen the hybrid, too, even though a couple complications along the way were directly because of that surgery.

and then there's the other unanswerable questions...

how will this life impact blithe and bram as they grow up? what kind of adults will they become? what kind of parents will they be? or will they even have children at all, too afraid to risk having a child like their brother? will they hate me and resent the life i chose for us? will they hate God for giving us this life? or will they grow up to love God? will they find comfort and refuge in Him and His promises? will they be compassionate toward other people? will they have learned to embrace today instead of fearing tomorrow or regretting yesterday? will they see God and Beauty and Light where others see darkness? or will they be consumed by fear and anxiety and mental illness?

if i'd had a crystal ball back in the day, even before asher came onto the scene, i think i would have made pretty much all the same decisions i've made anyway. and in the meantime, "all" i can do is to do my best, love them unconditionally and completely, and trust that God has plans for them, plans to prosper them and not to harm them, plans to give them hope and a future. it's just...

sometimes it would be nice to know ahead of time...

happy hallowe'en!!!

yes, yes, i know. it's already november and i still haven't posted about hallowe'en. bad asher's mom, bad bad asher's mom. and so here we go: the long-awaited post.

asher got his costume a couple weeks ago, and so he wore it. a lot. everywhere. all the time. yup, he LURVS his costume.

alright, fine, twist my arm. here's a pic:

that's right, folks. he was ELMO!!!!!!

(funny story: so, you may or may not remember how i got through his diagnosis and first admission. when i learned that he would be blue, i thought, "well, that makes hallowe'en easy. he'll be grover." so, now that he's pink, he doesn't need to be anyone blue. nope. asher almost blends in with the costume now!!! WOOHOO!!!!)

so, i'll tell you about hallowe'en now. i got all the kids dressed. you've already seen asher.

bram was Sheerluck Holmes, from VeggieTales. Sheerluck is their version of Sherlock, and is played by Larry the Cucumber. hence the green face and buck tooth. how cute is he, eh??

blithe was Mina Harker, from Dracula. look at her working that costume. i'm actually quite proud of this one.

here's the close-up of the make-up. now, i don't usually allow the kids to be anything evil or scary, and blithe wasn't supposed to be. this started as a medieval princess, which blithe understood to be an evil princess, and well, it went from there. and then i was having so much fun doing her make-up, and i guess i got a little carried away. but she looks fang-tastic, wouldn't you say?

anyway, the kids got all costumed, and out we went.

with bram's bestest buddy nicholas. nicholas' mom lori took us all around her usual "haunts." we left their place at 6:00, and didn't get back till almost 8. and you know what?

asher walked.

the whole way.

the whole time.

sure, he was a little slower than the other boys, but that's because they are two years older and have longer legs.

not because asher was tired.

yes, you read that right.

asher walked.

and ran.

and jumped.

and carried a pail full of candy etc.

the

whole

long

way.

for two hours.

and he wasn't even winded.

just a normal kid doing normal kid stuff at a normal 3 year old pace.

extraordinary, no?

i love it.

(and you're gonna laugh... i told him he's allergic to chocolate. and i got blithe and bram in on it. so he handed me every chocolate bar he got. mwahaha)

(and yes, i have some ideas about future costumes. next year: a robot. {wink})

WHA-?!?!

today we went for our regularly-scheduled cardio appointment in london. and all in all, it was... um... interesting. but in a good way, don't worry. {wink}

first, we went in for the pacemaker check. no problems there. awesome.

then, the ECG. which asher did himself. he got the leads, attached the stickies, and put them all on his chest, legs and arms. sure, the tech told him where to put them, but he put them on. you know you spend a lot of time in hospitals when... haha

then the fellow came in. he's working toward becoming an adult cardiologist, but to become an adult cardio, you have to do a two-month rotation in paeds because, in the words of a fellow from a couple years ago, "some of these kids grow up, and we need to be prepared for when they do." frankly, i prefer buffo's explanation: "if neither of us [paeds cardios] is available, the adult docs can come and check him out, and they'll have some idea of what they're dealing with." a much more palatable explanation, if you ask me (and yes, i'm choosing to ignore the idea of all paeds cardios being unavailable). anyway, dr chew asked a bunch of questions and listened to some of my answers, and listened to asher. and before you ask, yes, he heard the murmur, but said that it wasn't very loud, so it's not too concerning. um, ok... anyhoo...

then he went and got dr w, our cardiologist. she came in and checked asher out, and said that he looks pretty good, and since HCT is for failure, she's comfortable with dr russell's decision to stop it. i told her that dr russell had said that, if he got too puffy without it, he might be one of those kids who needs it every other day, and that since asher, having missed two doses, is now getting pretty puffy, i'm going to do the every-other-day thing. so she looked at him and said, "yes, his eyes are looking a little puffy." and she didn't argue with my dosing decision, so i'm going ahead with it.

and let's see, what else?... hmm... i was sure there was something else to report about the appointment... what was it again?... oh, yes, i remember!

ASHER DOESN'T NEED TO GO BACK FOR SIX MONTHS!!!!!!!!

this, my friends, doesn't happen in asherland... at least not in cardio province. and yet... here we are!!!!! is anyone else doing a happy dance right now, or is it just me??

so we got back in april for an ECG, echo, pacemaker check, and holter. ugh, the holter. the bane of pacer-life. i hate holters. pain in the arse, they are. but, ah well. so it goes. i do what i have to do, and hey, it's not for six more months, so really, WHO CARES?!?!?!

after the appointment, i had to rush to make it to an appointment for myself. i've been having some health issues of my own lately (nothing too major, but needs to be dealt with... blerg). so we flew back to st thomas, i dropped asher off at his dad's, and raced to my appointment. i got there a few minutes late, and then waited for the doc to arrive. once she did, she was very nice, and well, i'm heading back to her office on tuesday for an ultrasound, bloodwork results, and hopefully, a plan.

so when you're praying next time (and whenever you think about it thereafter), please thank God that asher has improved so much in just a few days. sure, the murmur is still there, but cardio isn't concerned about it, so that's wonderful! and then, when you're done with that, please pray for me. i'll admit, i'm a little freaked out right now, so please pray that i'll have peace and that doc will have some answers for me. also, please continue for my friend shawna, who is having some pretty major health issues in and of themselves, but now she has also been diagnosed with some complications with her pregnancy. please, please pray for her and the baby. it's a scary situation, so please pray for her, the docs, her husband and their children, including the one on the way. thank-you.

even *i* cannot come up with a clever caption for this pic! LOL

asher's dad just sent me this pic. asher likes to cuddle in his sleep, can you tell?

Asher. A Play in 3 Acts.

Act 1
Monday morning. it's early. I am not at my best or most compassionate, being half-asleep and not thrilled with being awakened by a tattling preschooler. hey, at least i'm honest here. 

Asher {runs to me, throws arms around me, weeping}: Mommy, blivey punched me on de head!

me: what were you doing when she did that?

Asher: nothing. she punched me.

me: are you sure? what were you doing right before she punched you?

Asher: i was hitting her. but den she punched me!!!

me: sorry, dude. you shouldn't have hit her. go say sorry and don't hit her again, do you hear me?

Act 2
Monday afternoon. i am in bed, trying to cuddle bram to sleep (and get some rest, myself).
Asher {running into room, burying head in hands on my bed}: Mommy, i need you! blivey punched me on de back. {weeps bitterly}
me: oh, no, sweetie, are you ok?
Asher: yeah, i ok. but i not like blivey anymore. i just like brammy. not blivey. she punched me.
me {calling pleasantly so as not to get blithe's defences up}: blithe, can you come here, please? just for a minute, hun.
Blithe {enters}: yes, mommy?
me: did you punch asher?
Blithe: yes. but he was throwing rocks at me. i told him to stop but he didn't, so i tried to stop him.
me: asher, were you throwing rocks?
Asher: yes. but blivey punched me!!
me: ok, first off, blithe, there is no punching. that is not the way to handle disagreements, so that's not ok. and asher, there is no throwing rocks in the house. ever. do i need to take the rock collection away?
Asher {sniffling}: no. but blivey punched me. i not like blive anymore.
me: alright, blithe, can you apologize to asher for punching him?
Blithe: asher, i'm sorry for punching you.
Asher: i forgive you.
Blithe: huggies? {they hug. Asher begins to walk away.}
me: Asher, you need to say sorry to Blithe now.
Asher: Blivey, i sorry for throwing rocks at you.
Blithe: i forgive you. {Asher begins to walk away.}
me: Asher, you need to give huggies now. you have to fix your relationship. {they hug, though Asher is standing as far from Blithe as he possibly can.}

Act 3

Tuesday morning. 7 am. nuff said. Asher is crying and climbing up the stairs. he enters my room, weeping like the world is coming to an end and fire and brimstone have destroyed his favourite stuffy. he buries his head on his arms on my bed.

Asher {between sobs}: mommy, dare no cheese!! i want cheese, and dare no cheese!!

**author's note: i'd like to point out that discipline is usually a little more involved than just apologies. but i haven't slept well in a couple weeks, i'm exhausted, and frankly, in this heat, close physical contact with another person (eg, a hug) is punishment enough. also, yes. the boys have a rock collection. all grey gravel-type rocks. what of it? haha

a song

(to be sung to the tune of "i'm a little teapot")

i'm a little robot and a boy,
i am real and not a toy
i can run and jump and laugh and play
i'm growing bigger every day.


my dad wrote this for asher when he got his pacemaker, and the kids were singing it this morning, inspired by the new look here. :) so i thought i'd share it with you.

so... is THIS what they call "normal"?

well! the last few days have been... interesting...which probably sounds negative, now that i'm reading it there. but i don't think it is... per se. it's just that, i mean, well, i don't get it.

we're all familiar with the ups and downs of life in our home. between asher's heart (etc), blithe's ADHD, bram's bram-ness (check his blog, if you're unacquainted. then you'll know what i mean), and my, um, "me-ness" it's pretty unique in these parts of the universe. and i'm ok with that. in fact, i love it. we're a quirky bunch, that's for sure, and (most of the time) i wouldn't have it any other way. but now...

i just don't get it.

and i don't quite know how to describe it, so i'll just fill you in, and you be the judge.

asher is healthy. and energetic. and happy. and pink. ok, granted, he's still a bit on the pale side, but his heart is only beating right now because there's a machine forcing it to; left to its own devices, it would be happy chugging away at a whopping 30 to 50 bpm. so i'll take the 80 now, thank-you very much. but with this "increased" heart rate comes... you guessed it... energy! i mean real, honest to goodness energy! today he ran around the house laughing and playing and - get this!! - keeping up with blithe and bram!! honestly, i couldn't believe it! he's happy, he's playful, he's eating, he isn't sweating or blue/grey or short of breath or fainting or dizzy or anything! in fact, the kid can outrun me now! (yes, i know, not much of an accomplishment given that i don't run. but still!!) he definitely has more stamina than i do! i'm still recovering from march and (most of) april, and he's running around as though there's nothing wrong with him! in fact, no less than twice today did i look at him and completely forget that there's anything wrong with him! this is incredible! someone, quick! pinch me! no, wait. don't. just in case this is all some wonderful dream. i don't want to wreck it. haha but wow! a 3-year-old with energy! who'da thunk! (i'm almost wishing dr c had taken me up on the whole "before we go ahead with this surgery that's going to give asher more energy, how about he moves in with you for a week. then we'll discuss whether or not the fontan is really in everyone's best interest." he (asher, that is. not dr c) is not "tazmanian devil" crazy yet... but i'm sure in a few weeks he will be.

save me. please. no, wait. don't. because apparently, this is exactly what we've been praying for all along. for a healthy, happy, playful asher. so i think i'm going to enjoy it.

and the other kids have returned to their own school now, having spent most of march and april at school in hamilton while they were staying with my family. (fyi, blithe won the Principal's Award for Outstanding Achievement in Class while in hamilton. and there was a bonus sticker on the certificate which said, "most improved." HOW PROUD AM I!!!!!) but they've settled nicely back into the routine of school at home. they rode the bus, they played with their old friends. bram was especially delighted to see nicholas, his best friend. all i hear about is "nicholas and me play transformers" day and night. i mean, really, if he didn't come home with completed work in his backpack, i'd swear he just plays transformers all day!

and then there's me. i've decided that, now that asher is stable (and believe you me, he and i have had a chat or two about not going back into hospital for a looooooooooong time. i have declared him stable, and stable he shall be!) i need to find me a job. so! i went a-looking this week. or rather... i posted on FB that i was going to look for a job. someone (not mentioning any names... tanna...) immediately suggested cardiologist. i'll admit, it made me smile. but i need to pay bills now. i'm pretty sure rogers and the hydro people aren't going to go for me waiting another 20 years to pay them. just a thought. but! because of a comment someone else made, i have a lead on something real, so i'll be sending in my resume there. and then the next day i was approached about another really exciting venture that i love, and it looks like that one is a go! we just need funding for it, so that will take time, i'm sure, so i'm still looking. but i also went in for some help because it's been so long since i've had a "real" job (not since my contract with the canada games ended in august 2001! yikes!). i just needed a couple pointers, tips on resume-writing, that sort of thing, and the woman directed me to a job bank that is used by canadian non-profits, which is exactly the sort of work i would LOVE to have, so that's exciting! so the job hunt is under way and looking promising and i'm hopeful that fairly soon i will be employed, bringing in some money, and so forth.

and of course, because there has to be something going on in my world, the battery on my truck had died from not being used for so long. so that was stressful, because we tried to boost it and it wouldn't start and i thought i'd have to get a new battery for which, of course, i don't have the money and how am i going to get to church in the morning if i can't start my car? ok, i wasn't freaking out nearly so much as that last sentence might imply. but it's a post on asher's blog, so you must be expecting some sort of potential catastrophe, right? haha but some dear friends came over and gave me a boost and now slimer (the truck's name, because it's the same green as slimer from Ghostbusters... only cooler, of course) runs beautifully, so once again, all is calm in our little corner of the cosmos...

and i'm still left scratching my head, wondering

what is going on here?!

i'm not complaining, mind you. i quite like it this way. but seriously! is this really what "normal" feels like?!

because i could take more of this!

oh. dear. me.

whatever happened to my sweet little boy, who was all cuddles and kisses and giggles? someone has taken him away, and replaced him with a hellian. sigh.

exhibit #1
he is now obsessed with drumming. on everything. the table. the floor. the couch. the dog. his siblings. the wall. the oven. his plate. his bowl. (and note: these two are WHILE THERE'S FOOD ON THEM!!!!) to give you an example, this morning i was changing his diaper, and singing him a lovely little song. ice cream by sarah maclachlan. cute ditty. anyway, i'm singing away, trying to get his wiggly legs into the leg holes, and i notice... he's drumming. keeping a perfect beat, doing creative little fills between lines - and keeping the beat at the same time, even! and what was he using as his drum, you ask? his bum. yeah. funny, granted, but still, HE DOESN'T STOP!!!!!!

exhibit #2
when blithe was wee, she got a little finding nemo riding car thing for her birthday. then it was handed down to bram. and now it's asher's. and asher loves it. i mean, LOVES it. he plays with it all the time. his favourite game is pushing the car around the house... chasing charlie. needless to say, charlie freaks out, running away from asher, fleeing for his life. you can almost smell the panic coming off my poor little doggie. asher, meanwhile, is killing himself laughing. to him, this is the funniest thing EVER! he only stops when charlie runs upstairs, which granted, takes longer than you'd think. charlie's absolutely adorable... and dumb as dirt.

exhibit #3
neither of my older children was a thrower. well, no, i lie. blithe used to throw her food on the floor when she was done eating. it was her little signal. lovely. and bram did the same thing. that's it. that's the extent of throwing in our house. until now. why, just 10 minutes ago, asher was throwing his cars and trains (all metal and heavy, mind you) across the living room. isn't that just special.

exhibit #4
this afternoon, i had to take care of some business at our MP's office. on the counter was a box full of chocolate bars to raise money for some charity. bram asked for one. i said no. so he went and sat down and read the book he had brought in with him. then asher spied the chocolate bars. he asked for one, very politely, mind you. i have to give credit where credit is due, and he does have very good manners. most of the time. anyway, asher asked for a chocolate bar, and i said no. now, forget everything i just said about his manners. because he flipped out. and i mean, he stood in the middle of the office and was sobbing. we're talking, weeping and wailing and gnashing of teeth. tears flowing like niagara falls. unbelievable.

exhibit #5
right now he's stomping through the downstairs insisting that everyone follow him in some sort of military parade celebrating wonky hearts?? i don't know.

exhibit #6
last night at bedtime, asher made one little joke. not even a funny one. not up to his usual standards anyway. well, the other two, being very tired, thought this was the most hilarious thing EVER and were nearly falling off the bed laughing. i'm not even exaggerating. so, of course, asher kept it up. kept repeating whatever it was over and over and over and over and over and over and over and over and over... yeah.



by the way... asher's surgery is 4 weeks today. not that i'm counting or anything.

another day, another trip to emerg

ok, on sunday i posted that ed took asher to emerg with (another) tube infection, and they prescribed clavulin. well, on monday, asher was febrile (low-grade fever), puffy, lethargic, somewhat irritable, and a really bad shade of blue/grey. so i took him to emerg. we saw dr joubert, whom i informed of the infection, and he was concerned, because, well, he knows asher by now. whenever we're in emerg and he's one of the attendings, we deal with him. it's lovely. i really like him, and the fact that he knows cardio better than any of the other emerg docs is reassuring. so he ordered bloodwork (CBC and culture) and a chest x-ray, just in case. but at the end of the day, there's no obvious signs of failure, and the bloodwork was a little off, but that could just be the tube infection. so he sent us home, promising to call if the culture was positive. he hasn't called. so i'm happy.

on another, non-asher note, i have now been admitted to hospital. i went to emerg in st thomas on tuesday night, thinking i had an ear infection that was affecting my throat, because the glands were swelling and i was having really trouble breathing. i was sent home with liquid codeine for the pain, and something to gargle. but how can you gargle when you can't tilt your head or breathe?? and liquid codeine would help... if i could swallow, which i couldn't. nice. my condition continued to deteriorate, and i couldn't sleep, couldn't breathe, couldn't swallow my own saliva, and my neck was so swollen i didn't have a chin anymore. my dear friend annie took me to emerg in london, where i was rushed in (within an hour, instead of 7-8), and quickly diagnosed with supraglottitis (an infection of the epiglottis, which causes it to swell and block the airway... yeah, it's potentially fatal. i have a tracheotomy kit beside my bed right now, and i was minutes from going to the OR to be intubated.) it was really scary. now i understand a bit of what asher goes through: no oral feeds, IVs, constant sat monitoring, bloodwork, stuck in a hospital all the time, trouble breathing, irritability and anxiety. yeah, it's scary. but now today, after several doses of IV steroids and antibiotics, some oxygen therapy and lots of fluids (when i'm allowed anything), seems to be doing the trick, and today i feel better than i've felt for days. oh, and let's not forget the pain meds. mmm... pain meds... although when you're NPO and have the munchies, it's not so fun. LOL

so that's an update for this week. hopefully there will be nothing else to post any time soon.

oh, no, i spoke too soon, but i'll put it in another post.

awww.... how sweet is this?!?!

asher and charlie are absolute best friends. they go everywhere together... including dreamland, it seems.

because it's not enough with asher's stuff...

so much has happened recently around here...

asher's tube is still (or again) infected, quite badly. doc put him back on clyndamycin for another week. i'm hoping this will clear it up, because he spent wednesday, thursday and part of friday crying because his tube hurt so badly. he hasn't been crying this weekend, so i think it's on the mend.

i'm going to try something new with him once this course of antibiotics is done. i'm going to try giving him some probiotics. he's been on antibiotics since early august, with only a few days here and there without them. and given that, after the staph infection earlier this month, he ended up with a fungal infection in the tube site, i really think this has the potential to help him immensely. (for those who don't live in paeds clinics: antibiotics kill bacteria. that's what they're for. and they do a good job. but the problem is that they kill all the bacteria. our bodies still need some bacteria to keep everything balanced. but when the good bacteria is gone, it disrupts the balance, and things like yeast and fungus can begin to cause problems, which explains why some people struggle with yeast infections while on antibiotics. probiotics help restore the balance to the body, by promoting the growth of "good" bacteria.)

on another non-asher note... blithe was diagnosed earlier this week with ADHD. and, i know this will shock you, so make sure you're sitting before continuing to read this sentence... sitting?... good. i've started a blog. it's called My Girlie & Me, and in it, i'm going to write about how blithe is doing, medical and non-medical ways of dealing with this condition and how blithe is doing with it all, and resources i've found on the subject. feel free to check it out: http://adhdmomandkid.blogspot.com/ i just set it up today, but rest assured there will be more posts coming. (as if there was any doubt about that! LOL)