it's a good day. for sooooooooo many reasons. :)

asher started school today, although if you've been lurking here lately, you knew that already. [wink] so here's how it went:

i got to the school at noon to pick him up. i went down to his class, where asher's bag was already packed and waiting for him at the door. i met the ECE (early childhood educator, who is standard now in the full-time kindergarten classes in ontario) who was lovely, and the EA (educational assistant, for asher because of his special needs), and she, too, is delightful. they were all very happy with him today. hooray!

they said that he was very good, he was well behaved, including tidying up as soon as the bell rang. (as an aside, i am now considering getting a bell to have at home. pavlov might have been on to something, methinks.) he played with lego, blocks and cars, and when i asked him if he made any friends today, he said, "yeah, brammy's friends are in my class." see, in our neck of the woods, junior and senior kindergarten are blended; bram was in mrs b's class for two years, and he had friends last year who are now in asher's class. i like this. since asher has heard all about these kids for so long, they're somewhat familiar to him, and i think this will help him to transition a little bit easier. he had a wonderful time, which thrills me to no end and makes my heart go way up.

asher wore his special vest under his shirt with his pacer protector. i had sent along a note explaining that the pad was to be worn on the bus and playground, in the gym, and during any activities during which there is a reasonable risk of his pacer getting bumped. the rest of the time, it can simply be removed and kept in a safe place. and they did that. and i was happy.

the EA said to me at one point, "i kept him in while they went outside. i hope that's ok." "oh, yeah," i reassured her, "that was part of the plan we made in june, so i fully expected him to stay in today." "oh, good," she sighed, "i'm a bit paranoid when it comes to him." i laughed and said, "probably a good idea."

i'm not sure which one of them will be joining us for the (second) intake meeting tomorrow morning. but i'm hopeful that tomorrow's meeting will be productive, that we will all be on the same page, and asher will have the best year of junior kindergarten possible. i'm not worried about the meeting; asher's dad and i will both be there, as will his paediatrician. this makes me happy, since asher has now dealt us a new layer of complexity (epilepsy). this will seal the deal on things like phys ed, the playground equipment, that sort of thing. that will be too bad for asher, but he will also have the opportunity to make friends in the other kindergarten classes and enjoy books (which he does already. how proud am i, eh?) and learn to use the computer. again, i'm hopeful that the plans we make tomorrow will allow him to thrive in a safe and creative environment for him, one in which he will not feel too centered out but in which he can just be one of the kids, all normal and happy and sparkly like he naturally is.

so there you have it. the full report on today. and now, i'm off to watch the end of MasterChef. fingers crossed for sharone. LOL

ASHER'S FIRST DAY OF SCHOOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

his bumblebee backpack. it's so huge on him!

look how proud he is of himself.

LOOK AT MY LITTLEST MAN!!!!!!!

this is asher, waiting for the school bus. he was soooooooooo excited to go to school today!!!

right now, as i'm typing this post, asher is at school. his first day of JK. my little man is growing up!!! one of the moms at the bus stop asked if i was going to cry, and i'm going to be honest here, i'm not crying. i'm actually overjoyed that this day is here!!! my littlest man is going about his normal life, doing all the things that normal kids do, and he couldn't possibly be any happier, and frankly, neither could i.

there was a bit of a hiccup yesterday with the whole "asher starting school" thing: the VP called and said that she would like to have another intake meeting because "i understand asher has some health issues." she wasn't aware that asher would only be going for half-days at first, and she seemed surprised that he would be riding the bus. i said, "of course he'll be on the bus! that's one of the things he's most excited about!" "well," said she, "the bus can be pretty dangerous. it's bumpy, there's a lot of jostling..." so i told her that asher is not on a strong blood thinner, and he's got a protective vest over his pacemaker, and blithe and bram are very protective of him, and he will be fine. so she accepted that. i'm afraid that they are now expecting asher to be very frail and fragile and lethargic and all things stereotypical heart/SN kid. wow, are they ever in for a shock! so we will be meeting with the VP, LST (learning support/special ed teacher) and the teacher, EA or ECE from asher's class. asher's dad and i will both be there, and our paediatrician is also planning to attend. i told the VP that i would bring my notes from our meeting in june and we'll get all caught up and make sure we're on the same page. i think the meeting will go very well.

ok, i should go now. i will be picking asher up from school in about 45 minutes, and i'm eager to hear from him how well his first day went. i'll fill you in later today with his version of events. :)

"human beings have the remarkable ability to adapt to anything." ~ Dostoyevsky

i was emailing back and forth with someone the other week, and she made an interesting comment. we were talking about a heart kid and his mom, what they were going through at the time, how to help, that sort of thing. and she said something that, for some bizarre reason, caught me off-guard and stuck with me, and i've been thinking about it ever since. i don't remember the exact context, but she used the phrase, "you moms who deal with so much more than the rest of us."

why did this phrase stand out to me? i think i know why:

it never really occurs to me that i do deal with more than anyone else. is that weird? and i'm not trying to be funny here or anything. i'm being completely serious. i don't actually see this life as being anything "out of the ordinary." and don't forget, asher is not my only child. i have two older kids, who are completely healthy.  bram had some dental work a couple years ago, but that's it. and blithe has never had anything more invasive than a flu shot. so it's not like heart life is all i know of parenting. i know the life everyone else takes for granted. so why do i not think of SN life as anything other than average?

honestly, i don't know the answer to this question. i have some theories, mind you, and i'd like to share them with you:

• my parents. for those of you who know them, that's all i need to say. for those of you who don't... they're amazing. they have been such a help to me over the last few years. this spring, while asher and i were in the hospitals, blithe and bram went to stay with my parents. for six whole weeks. and my parents were here yesterday helping me out with stuff around the house and watching the kids while i went out. they are unbelievable, and i couldn't do this without them.
• i have an incredible support network. i really do. i was blessed with a multitude of people who pray for us, visit us, help us. when asher was in london PCCU with a heart rate of 30, i called a friend at 12:30 at night. when they answered, i just burst into tears. no hello, no "it's heather," nothing. just sobbing. my friend said, "i'll be right there." and in less than 15 minutes, i was drinking a fresh timmies and bawling while my friend handed me kleenex and listened. that's just one example. another example would be the two friends who were with me in the waiting room during asher's fontan. and those same friends visited me in the hospital, called when they couldn't make it in, and updated the blog for me. someone else sent out an email to dozens of people as soon as he heard about asher's pacer infection, and within an hour, hundreds of people were praying for us. i could go on, but you get the idea. my kids and i are loved.
• call me crazy, but i don't believe there is actually anything "wrong" with asher. there are plans for this boy, big plans. divine plans. and none of them could happen if asher had a healthy heart (etc). and because of that, i can go about this life knowing that somewhere, somehow, something God-esque is going to happen. and in the meantime, i get to watch for it. how cool is that?

there are a couple other considerations. one of the them is this:

we started off with "your baby is going to die. so pull yourself together and say your good-byes." and let me tell you, there is no worse news than that, my friend. none. so after hearing those words, everything else has been a bonus. because, you know... it could be worse. we could not have to deal with this stuff. we could not have to make all those trips to emerg. we could not have all these specialists. we could not have all these admissions.

now, don't get me wrong. i'm no pollyanna here. i don't see this life as being all sunshine and rainbows. because, quite frankly, sometimes it sucks. but you know what? it sucks when your healthy 7-year-old has tonsillitis. it sucks when your 8-month old has a cold. it sucks when your teenager rebels. it sucks when your toddler walks into a doorknob. it sucks when your grown child has cancer. but...

it's amazing when your child wakes up and runs into your room and says, "mommy, i just love you soooooo much!" it's amazing when your child starts school. it's amazing when your child says, "mommy, i do it myself." it's amazing when your child laughs. it's amazing when your child naps. it's amazing when your child holds your hand to cross the street. it's amazing when your child moves from the crib to a big-kid bed. it's amazing when your child practices "criss-cross applesauce, hands in your lap." it's amazing when your child gets dressed on his own for the first time ever. it's amazing when your child draws you a picture. it's amazing when your child washes said picture off the wall (true story). it's amazing when your child kicks a ball around in the backyard. it's amazing when your child crawls into bed with you at night. it's amazing when your child's face lights up when thomas comes on TV. it's amazing when your child has fun in sunday school.

perspective is a good thing. when i "knew" that asher was going to die during the glenn, i was talking about it with a dear friend. she said, "you don't know he'll die." "oh, yes, i do," i sobbed, "he's not going to grow up. he's going to die very, very soon." "you don't know that," she repeated, "you don't know. sure, he might not survive. he might die next week. but then again, he might not. and you have no guarantees blithe and bram will grow up. they could get sick or fall off a swing or whatever and die. i don't want those things to happen, but you never know. you just don't know." and you know what? that morbid little line, that reminder that i have no guarantees about my other kids, gave me so much hope for asher. i have no guarantees with asher; he might not grow up. but you know what? he just might. so while he's here, i'll just find joy where i can. sure, it's pretty freaxiating at times; i don't deny that. again, i'm not living in a dreamland here where everything is hunky-dorey and lollipops and cotton candy. i'm living in reality here, and sometimes that reality sucks. it hurts and it's scary and it's harder than you can even imagine (if you're not living it, that is). but i choose not to dwell on all that. i choose to enjoy this littlest man of mine. it's hard sometimes, i'll admit. but there's (almost) always something in every situation to rejoice in. asher's smile and pink toes post-fontan. a visitor bringing baskets of candy, chocolate and reading material while we were in PCCU. onion rings with gravy. poutine. bawling and laughing (simultaneously) with a friend. these are some of the blessings. and i hold those very close to my heart all the time, because otherwise, i would suffer way more than i actually do.

i don't deal with "so much more" than anyone else. i just deal with different things. we all have a lot to deal with in life from time to time. i don't think i could ever move across the country, away from my family and friends. i don't think i would be all that comfortable with immense wealth (i'm weird, i know). that being said, i could never cope with intense heat, war and abject poverty. there is no way i could deal with a cranky child (which is why two of my kids have names that mean "happy"... and yes, asher is one of them). i don't do loneliness well. i would freak out if there were lions prowling the streets. i am miserable without God, friends, chocolate, coffee, and poutine. i know people who have these situations in their lives, and frankly, i don't know how they deal with it. (ok, i don't know anyone who has lions prowling the streets. that was a joke from a friend in south africa.)

but dostoyevsky was a wise man. he wrote, "human beings have a remarkable ability to adapt to anything." and it's true. this is my normal, and there are some people reading this who might not be able to cope with it. but to be fair, i don't think i could ever deal with your normal, either. we're given what we can deal with, and what is stressful to one person is no big deal to someone else. and that includes heart life. it's all relative.

in the ping-pong game of hospital life, asher and i are the ball.

remember a few weeks ago when dr w suggested discussing asher's fainting etc with neuro? and remember how neuro said, "fainting is caused by a sudden drop in blood pressure. so it's cardiac." so i called cardio.

don't get me started about the NP. i'm too annoyed. (although, i'm so glad she cleared up one mystery for me: according to her, epilepsy is a seizure disorder. i'm so glad she enlightened me.) anyhoo...

she put me through directly to dr w. so i told her that neuro said that the fainting and dizziness etc is definitely cardiac. so here is our plan for the time being:

we're going to try fiddling with his meds a little bit. asher has been on three meds for a while now. two of them are specifically for blood pressure (ramipril - an ACE-inhibitor - and hydrochlorothiazide - a diurretic), and aspirin, which asher is on for some mild blood thinning, can also decrease blood pressure. dr w thinks that perhaps three meds working to lower his blood pressure might be a problem.

now, due to the fontan, asher needs to continue on aspirin for the time being, so we can't stop that. and if he misses one dose of the diurretic, he puffs up, so we can't fiddle with that, either. which leaves ramipril.

asher has been on ramipril since March 2009, and it has done well for him, improving his function when his heart was trying to fail. but things have changed in there now, and due to the great gobs of oxygen and decreased workload for his heart, his function has improved. the other consideration is that fontans don't always tolerate ramipril very well. so she believes that this med is the culprit behind the dizziness and fainting.

we're going to keep an eye on him over the next little while to see how he does without it. we go back to clinic in october, and that gives us a good chunk of time to figure out if this is the right way to go. this also means that we are avoiding anything invasive, at least for the time being. if the issue is blood pressure, it should help him to stop this med. if there is no change, if asher continues having dizzy spells (most recently, he had one yesterday morning), then we will have to keep looking.

i'm hopeful about this plan. it certainly beats a cath and arch reconstruction, if you ask me. so we'll see how this goes.

update on Ali

sorry i haven't posted recently about ali. i hadn't heard anything for a while there, but i now have amazing news!!!

ali went home on monday night!!!! he is weak, pale, and has lost a lot of weight, but he's home!!!!!!!!

i can't tell you how happy i was to read this on his mom's facebook!!! it was a really long and scary admission, but ali is home to enjoy the play equipment he got through Make-A-Wish. thank-you all so much for your prayers, vibes, crossed crossables and so forth.

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?

would it surprise you to know i spent last night reading?

no? ah, you know me well. ;)

well, here is what i found: epilepsy adds yet another layer of complexity to asher's already complex health and treatment. take some of these statements from an article i read:

Isolated seizures can transiently influence cardiac function, and epilepsy, if not managed appropriately, can lead to serious cardiac dysfunction.

gosh, isn't that fantastic. basically, it means this: seizures can cause a heart to fail. this is rare in patients with a healthy heart. but the problem is that asher's heart is not in the greatest shape, he lives with congestive heart failure, and one cardiologist, when asked just how much seizure activity asher's heart can tolerate, answered "not much." too much seizure activity is not good for asher's heart.

but, you'll note, having epilepsy means that asher is prone to seizures.

On the other hand, cardiovascular disease and treatments can precipitate new seizures or alter the management of pre-existing epilepsy.

heart disease and treatments can cause seizures.

asher has heart disease. and he is being treated for it.

so, you see the problem here. seizures can cause the heart to fail. and a failing heart can cause more seizures.  which can lead to more failure. which can lead to more seizures. which can lead to more failure. which can lead to more seizures. and so on, and so on, and so on, and so on.

isn't neurocardiology fantastic? (the article i just linked to is where i got some of the information for this post. it's actually quite interesting.)

check this out:

Brain ischemia [...] can cause seizures.

what's "brain ischemia," you ask? it's a sudden decrease in blood flow to the brain. you'll note, this is also what causes fainting, as per the neurologist. you'll also note, asher fainted the other week. twice. (is anyone else nauseous right now, or is it just me?)

but, what would cause brain ischemia, you ask? well, how's this for an answer, again from the article:

Structural cardiac disease and arrhythmias cause impaired or turbulent cardiac output. The result may be poor cerebral perfusion.

translation: when there are problems with how the heart is built (and/or rebuilt), there are problems with how the blood leaves the heart and goes to the brain. arrhythmias also cause this.

asher has structural problems with his heart, and he has arrhythmia. and these issues, because of the issues with blood flow to the brain, cause seizures. which diminishes heart function. which, you'll remember, leads to more seizures.

the article also lists cardiac conditions and treatments that can "lower the seizure threshold" (the minimal conditions necessary to produce a seizure). four of these are congestive heart failure, congenital heart defects, "cardiac surgeries and other interventions," and heart meds. there are others, but i listed the four that apply specifically to asher.

ok, now, i realize that this all sounds pretty terrifying. and i'll admit, right now, i'm more than a little worried. give me a couple days, once i've sorted this all out in my head, and i won't feel so bad. but it's still very new and fresh, and i just need to get all this out before it really starts messing with me. but you know that i will be calling cardiology today, in london, and probably in toronto, too. i just need some reassurance right now. thanks for humouring me today.