it's a sad day today.

my post this morning was inspired by a post on Adventures of a Funky Heart, written by Steve Catoe. the entire blog is devoted to CHD, providing tons of information about research, treatment, goals for the future.

Steve was born with tricuspid atresia. it's similar to HLHS, only on the other side of the heart. he had the BT shunt when he was very young (i forget what age), he had an early version of the fontan, he had a pacemaker. he survived sepsis, endocarditis, gout, CHF. he was one of the oldest CHD survivors.

i shared many times, both on this blog and on facebook, from his blog. the writing is incredible, and the information is invaluable. so many times, i commented on his posts, and he would reply, not only on the blog, but often directly to me, as well, usually making jokes or vowing to find the information i was seeking.

today we learned that steve, at the age of 44, passed away sometime late last night or early this morning.

to say he will be missed is an understatement. he was a relentless crusader for CHD. he was a cheerleader for heart warriors and their families. he was a fount of information. he was funny, intelligent, and encouraging.

please. if you know a heart warrior, hug them today. Steve lived a long time by CHD standards. not all CHDers have his kind of longevity. but i will end with a link to his post from the other day. it sums up his mission and goal.

A Cure for Heart Defects!

RIP, Funky Heart. our broken hearts are breaking. you will be missed.

66 years ago today...

on 29 November, 1944, Dr Alfred Blalock, Dr Helen Taussig (yes, a woman) and Vivien Thomas (a black man) performed the first Blalock-Taussig shunt operation at Johns Hopkins in Baltimore.

the shunt was designed to help "blue babies," wee ones with a CHD known as Tetralogy of Fallot. in ToF, there are several issues:

1. pulmonary stenosis. the pulmonary artery carries de-oxygenated (blue) blood from the right side of the heart to the lungs. with PS, the opening to that artery is too small and restricts blood flow to the lungs.
2. VSD, a hole between the two pumping chambers. this allows blue blood to pass over to the left side of the heart and mix with the red blood and travel out to the body.
3. right ventricular hypertrophy. the right ventricle has to work harder than usual to overcompensate for the PS and VSD.
4. overriding aorta. this exacerbates the VSD and allows more blue and red blood to mix and travel to the body.

at this point in history, in 1944, there was no open heart surgery for these babies yet... that would come much later. and actually, up until this day, there was nothing at all that could be done for babies with severely wonky hearts. nothing. this procedure was the first of its kind, anywhere, ever. 

if you're interested in learning more about the surgery, including how to do it, click here. this will take you to a site which will teach you about ToF, and you can do the surgery yourself, in a cyberish kind of way. it's amazing, it really is!

this procedure is not what Asher had. Asher had a modified (or reverse) BT shunt, which went from his MPA (main pulmonary artery, right before it branches off to the lungs) to his proximal innominate artery, allowing most of the blood to by-pass his lungs and go out to his body.

but without this first procedure 66 years ago, Asher would never have survived beyond his diagnosis. there would have been no hope for him at all. and yet...

here he is.

almost 4.

(and for the record, i know of many people with ToF. you can click on Anniek's blog on the sidebar to read her story. and in addition to Anniek, there are two people at my church with tetralogy: a father and son. yes, the father has it, too. i've met him. he's an adult, and if you met him, you'd never know he has a wonky heart. simply amazing. and when you consider that these people would not be here today without this first surgery so very long ago... awesome. just awesome.)

how AMAZING!!!!

can you believe that

on thursday...

4 days from today...

ASHER TURNS 4!!!!!!!

honestly, i can't believe it! just thinking about it makes me cry. even the most faithful followers of this blog cannot fathom how miraculous this is, that

Asher is alive.

and

Asher is stable.

i'll admit, i never allowed myself to imagine him living this long. in fact, it's only been in the last month or so that i've been saying "he's almost 4." and yet... here we are... he is officially

ALMOST 4!!!!!!!

in case you were wondering...

recently, a friend of mine asked a question on her facebook: what are the "extra" expenses that you incur when caring for a medically fragile child, especially the expenses that you never expected or never thought about until you had this child?

great question, and WOW! did she get a lot of responses.

i know that i, for one, always believed that our health care system in ontario was fabulous... at least in that it covers so much. then asher was diagnosed. sure, i have never had to pay a dime for his care in the hospital, which is good (for example, the prostaglandins that kept him alive before and in the initial period post-hybrid, yeah. that one med costs $1500 per dose. at two doses per day. for 11 days. not to mention, the cost of the bed in CCCU - just the bed space, not the meds, surgery, nurse, therapists, docs, equipment, but just the bed space - is $2500 per day. and just in that first admission, asher spent 18 days in CCCU. and there were a lot of other meds, several doctors, heart surgery, tests, an MRI, oxygen, bloodwork, etc etc etc etc etc... yeah, thank the good Lord for Tommy Douglas, because there is no way we could have afforded to keep asher alive for just one day in there). most of asher's meds were covered, either partially (80%) or entirely, that sort of thing. i've never had to pay a doctor or a surgeon (thank God!). i didn't need to pay for his first feeding pump, although i would have had to pay for the replacement pump were it not for a generous gift from some charity (i still don't know which one).

but it's those other expenses... the ones you never think about... those are the ones that destroy you financially. things like transportation, parking and gas for appointments. food for the parent who stays with the child during admissions. food for the rest of the family when i'm away or just plain exhausted at the end of a looooooooong day (because that has usually ended up being "convenience" foods or take-out). it's things like special tape and tubes and syringes and formula. its the "special diet" asher required to gain weight, things like ice cream and whipped cream and tons of cheese and butter and mcdonalds. the "stuff" you buy for your other children in an attempt to compensate for your absence or consuming focus on the other child. it's the phone bills, as you try to contact (and/or co-ordinate) doctors and therapists, the cell phone that you must have at all times in case of emergency, and long distance calls when you're in the hospital or clinic far away from home. it's the internet access, so you can educate yourself on your child's condition, and so you can stay in contact with family and friends while in the hospital (and that's expensive). it's utility bills incurred because of your child's condition: asher needs the house warm in the winter (21-23C is ideal for him), and very cool in the summer (our a/c is set at 18-20C in the summer); when asher was refluxing all the time, it added up to a lot of laundry; hydro to run the feeding pump 20 hours a day, etc.

and with the boys' birthdays coming up, i just don't have the money for the party they really want (at a bowling alley), so we're going to do something fun here. and it's gonna be uber cheap. and i want to give asher something awesome because, well, he has survived four years! but um, yeah. not gonna happen. and i want to give bram something awesome because, well, he's awesome for putting up with this life. but um, yeah. not gonna happen. i'll figure out something good, i'm sure, i always do, but in the meantime, there's the guilt and panic. which leads us to...

the non-financial issues: the stresses on relationships and friendships. the guilt of "ditching" the other kids when asher gets sick. the stress of money-less-ness. the chaos and unpredictability. the feelings of freaxia and of being overwhelmed... i could go on,

getting the idea?

and asher is one of the cheapest and least complicated medically-fragile children i know of.

seriously.

i want you to check out my friend's post. she wrote about this subject the other day (and did it better than i just did, i might add).

it will give you a clear picture of why SN/MF families struggle.

and so, since it's thanksgiving today in the states (asher has a lot of followers south of the border), and with the holiday season fast approaching, i'm asking you, gentle readers, to do something.

i know that a lot of people look for registered charities to give to at this time of year. if that's the case, i would ask that you donate to cardiovascular research at SickKids. if you decide to go that route, that is.

but i want to suggest something a little different, too. something you may not have considered. and of course, since i'm writing, it will involve a little story.

christmas for the kids and i is taken care of this year. i mean, i don't have to worry about anything. someone (whom i will not name, but rest assured this person is amazing) emailed me the other week to say that their family (including their parents) are giving us christmas this year. i don't have to buy a single gift for the kids. we will also be given groceries and gift cards, because they know that i'm low on funds (shocking, i know), so i won't need to worry about anything like that. honestly, just the thought of this gift is enough to make me cry. i'm tearing up right now, actually. this is such a wonderful gift for the kids and me, and even i cannot express how grateful i am for their generosity.

so here's where you come in:

we all know families with chronically ill and/or medically fragile and/or technology-dependent children. why not help out one of those families? you don't need to play Santa like my friend is doing. but you might think about buying a gift for each of their children (please remember the siblings). and/or something for the parents. or you might want to give something simple like grocery store gift cards. or get the oil changed in their vehicle. or rake their leaves/shovel the snow. offer to watch their other children while they go to an appointment. take a couple meals to the parent in the hospital with their child. whatever. just please, do something. you can't imagine how stressful this time of year can be for families in this situation (well, maybe you can after reading these posts... at least, i hope you can). please help someone this holiday season. even something small can make a huge difference in their lives.

Whatever you do for the least of these, you do for Me.     ~ Jesus

dude, you are such a dude!!!

so, this morning, i picked up asher from his sunday school class, and he and i meandered down the hall to get blithe and bram from their class. as we're walking, he saw an older kid he knows. (rowan is 13 and helps out in asher's class sometimes. asher loves him. so cute!) anyway...

rowan is walking down the hall with a bunch of his friends. asher sees him, does the little nod-thing, and says, "hey rowan." rowan looks over, does the nod-thing, and says, "hey asher."

and they both just kept walking.

because they're just. that. cool.

look what my baby can do!!!!!!!

that's right, asher fans.

HE CAN WRITE HIS OWN NAME!!!!!!!!!

and he's not even 4.

yup. he rocks.

and those faces... those perfectly (for a kid) drawn faces... you guessed it, asher drew those, too. he's awesome.

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.