some sweetness.. and some sadness...

blithe wanted to take some pics tonight with my phone, so i let her. lol i thought i'd give you a peak at what down-time is like around here. :)

especially since... today, asher went for therapy again. and that breaks my heart.

as usual, he first went straight for the cars and threw them all into the sandtray... and proceeded to bury them. then he pointed out a generic tow-truck which he keeps telling us is "like Mater." after a while of burying the cars, KW asked asher what mater does.

"he hook cars up to his tail."

"which cars? any cars?"

"no, juss de broken ones."

"oh, ok. what does he do with them?"

"he take dem to de garage."

"to get fixed?"

no answer.

"do the broken cars get fixed at the garage?"

nod.

"does it hurt the cars when they're getting fixed?"

no answer.

"do they feel better when they're done getting fixed?"

no answer.

after a couple more minutes, KW decided to join in his game. so she picked up a red car with a missing wheel.

"help, mater, help! i'm broken! can you help me??"

"here come mater! he hook lightning [the red racecar. my bad, i should have specified.] up and take him."

"where is he taking lightning?"

"to de garage."

"what's going to happen there?"

no answer.

same game for several more cars. once she stopped playing that game, he buried all the cars that "mater" took to the garage.

do i need to explain any of this? i hope not. because it makes my heart go down to think about it.

so please hold asher in the Light over the next while. dealing with all this now is much better than letting it fester for years until it's overwhelming and he begins acting out... but seeing just how traumatized he was by the events of this spring is absolutely heartbreaking. so please pray for him.

also, since you're praying... please pray for asher's little heart buddy, Hannah, who has TGA (transposition of the great arteries). she is in the hospital right now, in st thomas. she is now doing better than she was the other day when she was admitted, but momma (Rachel) got some nerve-wracking news today, and they are now, basically, waiting for hannah to get really sick before they do anything. she will need to have her aortic arch ballooned or stented, and there is some narrowing in her pulmonary valve, and her MPA isn't doing so well, either. so it's "wait and see" for now. so please hold this family (dad is Nick) in the Light over the next little while. this is stressful, knowing there are a bunch of issues that need to be dealt with but that aren't being dealt with until "absolutely necessary." (for the record, they're not being reckless about this. there's a reason they're waiting, but i won't go into too much detail.) a stressful situation, this is; one that i know far too well. believe me, it sucks. so yeah, please pray for them. and i'll try to keep you posted. thanks.

"false" alarm

asher came home from emerg, so that's a good thing. :)

all the tests came back negative, other than some sugar in his urine. but they checked his blood sugar and that was fine, so we'll have to follow up with paeds in a few days for another urine sample, but other than that, everything was fine.

doc and i suspect we may have just picked up on something while it's still brewing, so we'll all be watching asher very closely over the next few days. this has happened before, that i picked up on something and we were sent home only to be admitted a couple days later with something weird. right now i suspect it might be another UTI or a migraine, but we'll have to wait and see. because really, it could also be nothing. which i would prefer, to be quite honest. it would be so nice if the little man could get a break for a while.

so please hold asher in the Light over the next few days.

and one more note: remember shawna and ethan, my friends from SickKids (in the list of kidlets at the end of the post, this is the second little guy named ethan; his momma shawna is a CHD warrior)? they have a big meeting at SickKids tomorrow. please hold them all in the Light. this will be a difficult meeting, potentially with a lot of tension and disagreement. what they all need is patience, grace, discernment, wisdom, humility, and to remember that they all want what is best for ethan, but that what he needs most is co-ordinated, compassionate and co-operative care. so please pray/cross your crossables/send good vibes/whatever you do for this meeting tomorrow. also, please remember shawna, as she has a lot on her plate right now. she's a strong woman, but some prayers never hurt anyone.

not so awesome

asher's with ed today, since my bathroom is being torn apart (literally, they're taking out the entire ceiling, including lath and support beams right now) and i don't want asher and bram (who has mild asthma) around while that's going on. but ed called a few minutes ago, and

something's not right with asher.

i've been seeing it, too, actually, but i've been playing chicken with him, waiting for whatever it is to show up. i just don't want to put him through another trip to emerg if it's not necessary. but it now really sounds like it's necessary. so here's the low-down:

• asher has lost his appetite. this is actually a huge sign with him, since, as i've said before, he's a bottomless pit. and he knows he needs to eat because he needs to gain weight. so for him to stop eating, especially his favourite foods, including ones he asks for specifically, this is major.
• he's been having difficulty swallowing thin liquids, especially water. quite often over the last couple weeks or so, he'll take a drink of water, then start coughing like it went down the wrong way. asher hasn't had difficulty swallowing in over a year now. and while something like this happening once or twice isn't normally a big deal, this has been happening at least a couple times a day.
• yesterday, he was hot to the touch. no real noticeable fever, his forehead was warm-ish yesterday, but his body was hot.
• he sweats. a lot. even when it's cool and not humid. the other day when it was so hot and humid outside, i cranked the a/c to make it a chilly 22C in the house. i was contemplating my hoodie; asher's hair was damp. indoors. because i don't take him out in the humidity. and all the windows were closed.
• he has been short of breath off and on for a couple days. like last night, while he was sitting on the bed listening to the bedtime stories.
• his activity level is markedly decreased.
• off and on, he's irritable. which, ok, is almost an assumed trait among heart kids, but not asher. happiest kid ever, he is. but not the last couple days. and the slightest thing will set him off, either into a near-rage or bursting into tears.
• he's been sleeping a lot. two naps yesterday: one on the way to church (a 20 minute drive, and he's usually wired because he loves sunday school), and one in the afternoon (he fell asleep on the way home from church, the slept for three more hours once home).
• today, he gagged. he just sat there, started coughing, then retching like he was about to vomit.
• when ed asked him if he hurt anywhere (expecting him to say that his chest hurt [because of reflux]) asher said that it "hurts beside my pacemaker." ed asked him to point to where it hurts, and asher pointed right at his pacer. ed touched the site, and it's warm. not quite hot, and he said it doesn't look inflamed or anything, but it's definitely warmer than the area around it.

so ed is taking asher in to emerg this afternoon. i told him to keep me posted, to call if he has any questions, and to definitely call me to tell me what they say.

when i know, you'll know.

meantime, please pray. thank-you.

AWESOME!!!!!!!!!

asher went in for his weight check this afternoon. now, remember:

• in June 2008, asher weighed 12.4kg (27.28 lbs)
• in April 2010, asher weighed 12.8 kg (28.26 lbs)
• 3 weeks ago, asher weighed 13.6 kg (29.9 lbs). but, you'll note, he was fighting a cold and therefore retaining a lot of fluid.
• 2 weeks ago, asher weighed 13.0 kg (28.6 lbs), after the fluid had come off.

so this afternoon, asher weighed in at....

drum roll, please....

13.5 kg!!! (29.7 lbs)

that's a 500 g gain!!! that's over a whole pound in 2 weeks!!!!!!!!! how incredible is that, eh???

dare i hope there won't be a tube in his future?

well, it's a day...

so here's the day so far: bram was complaining this morning that he couldn't walk, but he usually says that when he's tired, so i sent him to school. i figured that once he got there with all his friends he'd be distracted and feel fine. apparently, not so much. the school called at 9:02 to say that bram wasn't feeling well and could i please come pick him up. so i got there, and while i was chatting with his teacher, we heard a little "mrs b-? i just acccidentally threw up." poor little thing.

then off to asher's second session of therapy. that was kind of upsetting, but i tried not to cry. instead, i tried to just hold everything without judgement. just watch. but really, i wanted to cry.

he went straight to the cars and found one he liked best. he took that one to the sandtray and started to drizzle sand on it and bury it. completely. KW just let him play like that for a while, to soothe him, because what she had planned for the morning "might not be so soothing." or he might not react at all.

she pulled out two baskets full of medical-inspired toys. there were little IV poles and meds and nurses and doctors and heart monitors and a hospital bed and so forth. he placed them all in the sand, and proceded to bury some of them. the surgeon with a mask, buried. the nurse (i assume) was stuck in the sand up to the waist, then ignored. the heart monitor was put in the sand upside down, so the wavy line was covered.  he drizzled sand all over the bed, but then dumped it off and put the bed aside. she gave him more more doctor-looking toys (white coats and stethoscope). he buried one, but left the other one entirely. didn't even touch it.

then he was allowed to put the medi-toys away, and was given a basket of cars again. he put them all in the sand... and buried them. all of them.

well, then time was up, so it was time to go home. asher seems tired, but likely not as drained as i am. he doesn't like to talk about what he's feeling. it's a rare moment when he opens up about this sort of thing. he just goes along as though everything is fine, but it would seem he's just burying his feelings. play therapy allows him to explore deeper feelings and issues in a free, non-threatening, non-judgemental environment. click on the title of this post to go to the play therapy page on wikipedia.

anyway, we still have one more appointment today for little asher. we go for a weight check with the paediatrician shortly after 2:00. i'll post later and tell you the results. please pray or whatever you do. we need a weight gain. thanks so much.

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.

things uttered today

• at 6:20 am: "yes, asher, you can have pepperoni pizza for breakfast."
• at the dollar store: "asher, what do you want for a treat?" "i want one of dese, mommy" (points to an ice cream sandwich) "perfect!" "oh, mommy, i not want dat. i want candy." sigh "ok, hunnybun, you can have that blow-pop instead."
• at the grocery store: "thanks, blithe. we could use that coupon for whipped cream. hmm... how many should i buy?"
• "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!" as asher runs - literally! - around the entire superstore. i'm not even joking. the whole store. running. usually away from me or right in front of someone else's cart.
• "mommy, i hab dis?" as asher hands me a Yop that he grabbed while helping blithe to pick up some whipped cream.
• "please, God, let this be high in fat... what?! only 3g of fat?!?! well, every little bit counts, i guess."
• "please, God, let the all-beef hot dogs have more fat than the regular ones." fyi, all-beef hot dogs have less fat than the regular ones. guess which ones we got?
• "why is homo milk $1 more than 2%?!?! ok, fine, i'll just get 2%, and mix it with table cream. it's got 18%. that will have to do."
• "why is all the yogurt and sour cream and cottage cheese low fat?! i want as high fat as possible!!"
• "no, i'm not buying those pudding cups. i'm going to get some instant pudding, because i can make that with cream."
• "EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!" asher, still running throughout the store.
• "i'll go get him, mommy." "thank-you, blithe."
• "put me down!!" shrieked as blithe carried the paced single-ventricle heart kid from the next aisle back to our cart in the freezer aisle, where i was contemplating ice cream and Carnation instant breakfast (which is expensive, by the way!!).
• "ok, which beans have the most fat? oh, wait, i have beans at home, and i can cook those up and mix in some butter when i give them to him."
• "oh, wow, what a great price for crushed tomatoes! they're non-fat, but i can mix some polycose and olive oil into the sauce, and butter his pasta. perfect!"
• at home: "look, mommy, i hab cheese!"
• "asher, did you drink your yop already?" "oh, yes, mommy, i did!" i'm not joking. that's how he answered, all sing-songy and with a smile.
• "yes, asher, absolutely, you can have ice cream for supper."
• "asher, do you want a second hot dog with cheese?" "oh, yes, please, mommy."
• "mommy, i hab more ice cream?" "yes, you can. you ate some of each of your hot dogs, so you can have some more ice cream."

 i'm not even exaggerating here. these are actual, direct quotes from today. this is just messed up. LOL

ugh

wow, the last few months have been rough. really rough. brutally rough. asher has been through the ringer so many times, and frankly, i feel like i've had the crap kicked out of me more times than i can count.

as it happens, i am now exhausted. and overwhelmed.

the bug that asher has in his bladder is a nasty one. in fact, the docs don't even know how it got there, and he's got a 14-day course of antibiotics to get rid of it. i am sure that this infection was caused by the huge amounts of lasix asher was given in the spring, which has injured his kidneys. we'll wait and see for sure on the renal ultrasound in july, but i would put money on this (if i had any, that is, but you know what i mean).

asher needs to gain about 5 lbs just to get up to the 50th percentile on the growth chart. ever tried to pack 5 lbs onto a healthy 3 year old? it's pretty much impossible. so you can imagine how optimistic i'm feeling about putting any weight on asher. :( he's only got a few months to turn this weight pattern around, to start gaining regularly... and if he doesn't... he'll get a g-tube.

again.

and right now, i can't help but feel guilty for that. when he started eating, i was so excited. and he was eating so much; i'm not joking when i say that he used to sneak into the fridge and take out things like cheese and yogurt and apples and stuff like that. so i thought he was doing well. i pushed to get rid of the tube; i'm the one who actually took it out. and now he might need it again. i feel like it's my fault that he might need to go through all that again, after working so hard to get rid of the tube before. and in the meantime, i need to feed him food that is so disgustingly unhealthy, just so he'll gain weight. for crying out loud, the other morning i buttered a hashbrown from mcdonald's!!!! because it's not greasy and gross enough (although delicious), now i have to butter it!!! he gets to eat all the fast food and cookies and ice cream he wants... and more. that's right, i have to force my heart kid to eat a happy meal. and where any other mother would say, "yes, hunny, you can have some ice cream or cookies, but first you need to eat an apple," i now have to say, "yes, sweetie, you can have an apple, but not before you finish all your ice cream and cookies." do you see how messed up that is?!?! and this is actually healthy for him!! but then i start to worry about how fattening and unhealthy these foods actually are, and even though they're good for him on the weight front, this kind of diet can't be good for his heart... but we'll have to deal with that later, i guess. that's right, we'll deal with hypertension and cholesterol later. for now, let's make him fat. blech!!!

add to all of this the fact that blithe and bram see asher eating like this, and i have to say to them, "yes, i know you'd like a milkshake with your fries and burger, but that's not healthy. you need juice or milk, and you're only getting fries as a treat. it's salads with dinner at home for the rest of the week. only asher gets junk food." try explaining this to them. they don't get it. they want the same stuff he gets. and he doesn't even eat or drink it all, because he has almost no appetite anymore.

and now i have discovered something disconcerting about myself: i have no idea how to live normally anymore. it's like i've forgotten how to live outside a hospital. when we're in crisis mode and asher's really, really sick and we're dealing with docs and mystery illnesses and surgeries and nasty meds and emerg trips and ambulance rides and all of that, i'm fine. not even fine. i'm really good at that. i cope, i take care of myself, and i'm ok. i can carry on a conversation, i can laugh and joke about anything and everything, i know what to do and where to go and who to talk to and i keep everything organized and i'm on the ball.

and then we come home.

and i'm lost.

i'm not even joking here. i have no idea how to function anymore on a day-to-day basis. this isn't a lack of trust or faith or surrender. this is conditioning. the last few months have been one crisis after another. so what do i do when there's no crisis? how do i live? what am i supposed to do? how can i sleep in a big, comfy bed? i can rest on a cot in a tiny, cramped hospital room. but in my own room, i get sleep, sure. but it's not restful sleep.

i'm trying to take care of myself, i'm trying to pull myself back together, but it's hard. i could do this if asher were in the hospital. i journal and breathe and go for walks and read and wear my perfume and rest and laugh and play and what not. but somehow at home, where there is so much else that requires my attention, i just don't know what to do.

i will get through all this, i'm sure i will. i've been through worse, and i got better. so i can do it again.

but wow! this is hard. and overwhelming. and exhausting.

sigh.

so please hold me in the Light now. i'm in a rough place, and i need to get out of it. thank-you.

oh, well, this is just too exciting!!!!!!!!!!!!!!!!!!! :D

what a way to start the day!!!! i can't believe we're actually here already; it's like some sort of wonderful dream!! fyi, i'm writing this post in mid-air, because i'm just. that. happy.

although i think, perhaps for the first time in my entire life, the word ELATED is appropriate! and giddy (although that is nothing new, lol). so let's just get to it, shall we?

i got to the school at 9:00 and met the learning support teacher for the primary grades. he seems very nice. and the principal, whom i have met before, joined us, and she was very helpful and informative. and of course, dr b, our awesome awesome awesome paeds, came and brought Trouble with her. (i should clarify: margaret behaved herself. her dog's name is trouble and she is training as a helper dog right now.)

they weren't nearly as terrified by asher as i expected (and semi-hoped... it can be so fun to see people's reactions when they hear "he has half a heart." LOL), as they are used to accomodating special needs kids in the school, which frankly, i think is wonderful. so here's a run-down of the plan:

• asher will be a hand-off kid, meaning that when he gets off the school bus, blithe will take him directly to his EA or ECE, and he will be taken right inside. we just all agreed that outdoor play would be too chaotic for him, it will be too difficult to keep an eye on him, and the odds of him getting injured are too great. the bus arrives only a couple minutes before the bell, anyway, so he won't miss much there. he also will not be going out onto the playground for recess. he may go out to the front of the school with an adult, a few older kids, and some other special needs kids for some outdoor play. we just can't risk him on the playground with hundreds of other kids with limbs flailing, not looking where they are running or throwing balls and so forth. too many chances for something to go wrong there.
• he will have a modified phys ed programme. the LST is going to get me the list of activities in the JSK phys ed curriculum, and i will go through it and "ok" the activities that won't endanger asher. we did discuss excusing him from phys ed altogether, but that's not fair to him because he is so active and loves to run and play and be active (we told the LST that asher doesn't know he only has half a heart, and he laughed). when he isn't in gym with his classmates, he will either play some other games in the atrium, or he will go to the computer lab or to the other JSK class.
• he will be supervised at snack and lunchtimes. we told them that he has some significant nutritional needs right now and we need to make sure that he eats everything that is sent with him. he doesn't gain weight easily because of his heart, so he will be with an adult and another child at nutrition breaks. and since the two JSK classes go outside at opposite times, he can be inside with his class, then when they're outside, he'll join the other class while they eat.
• he will be assessed by OT, PT and SLP early in the school year. (oh, yeah. you might not know what those are. OT = occupational therapy; PT = physiotherapy; SLP = speech and language pathology). because he has spent so much time in hospitals, with limited activity due to cardiac monitors, he may need some help with his gross motor skills. also, due to frequent admissions, his speech is somewhat delayed. not much, mind you, but some. he speaks perfectly clearly, and if you were to meet him, you would understand everything he says, but his vocabulary and syntax aren't the greatest. he's doing very well, all things considered, but with a little assistance and special attention, he can move past "all things considered" to "hokey doodle, did you hear that 3-year-old quoting shakespeare?!?!" ok, maybe that last part is just a shakespeare-loving mother's dream. LOL but i'm sure he could say, "i'll lug the guts to the other room" without problems. there's hope. teehee
• every teacher, EA and ECE in the school, including supply teachers, will know asher. his picture and info sheet will be posted in his classroom and in the principal's office by her phone. over his first few days, every teacher in the school will pop into the class to see him so they can identify him. this is purely precaution, since we're all hoping he'll be completely healthy, happy and safe at school, but we are also aware that such may not always be the case. so if he's in the hall and faints or gets dizzy or freaks out or whatever, any teacher who sees him will know right away who he is and what to do.
• we haven't fully decided when to start him. the original thought was to start him toward the end of the second week, but he will know when school starts and will be desperate to go, so i don't think that will work. we'll probably start him on time, so that he won't be so overwhelmed by so many kids in the class, and he can ease into the transition with fewer kids at the start.
• the idea behind easing him in is this: since the spring admissions, asher has had some anxiety and fear, so he may not have the easiest time transitioning into something as major as school. don't get me wrong here, he's deliriously excited to be starting school. in the ambulance last week, he was saying to dr b, "i go school now?" and she'd say, "not today, hun, we're going to the hospital," to which he'd reply, "no, i a big boy. i go school now." so he's very, VERY excited about this, but we're concerned about his PTSD kicking in when he's suddenly thrown into a classroom full of people he doesn't know. other than an hour or so every week at sunday school, he's just not used to being around that many kids, so this will be a HUGE adjustment for him.
• asher will start by going half days, in the mornings. he's very excited about riding the school bus with "blivey and brammy" so he has to do that, but for the first little while, i will pick him up at noon. he's going to get very tired very quickly at school until he adjusts, and he will likely get overwhelmed quickly, too, so yeah. half days for the first while.
• they suggested some sort of protective vest for asher, to protect his pacemaker. he could wear this whenever he would be doing something that might bump his stomach, like playing outside, phys ed, that sort of thing. so i'm going to have to look into that.
• i also gave them a heads up that he may need to get a feeding tube in the fall. it's not for sure, and we're doing everything we can to pack some pounds onto him (you should have seen their faces when they heard about the butter and whipped cream diet!), and we're really hoping he doesn't end up needing it, but i thought they should know. so they are going to contact CCAC about that, since that would require nursing care, and i will be keeping them posted on that front over the summer.

so there you have it, folks. the plan for asher starting school. i can't believe this is actually happening!! it's like it's officially official and in september, my littlest man is going to be in school!!!!!!!!!!!!!!!! this is SUCH a huge step for him, an incredible milestone, and i don't know who's more excited, him or me! LOL

and yes, for those who are wondering, i will be posting pics on his first day. :D

holy calendars, batman!! do you know what tomorrow is?!?!?!?!?!?!

THE TRANSITION TEAM MEETING AT ASHER'S SCHOOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!

that's right, folks, tomorrow morning, i will be sitting down with the Learning Support teacher et al. to discuss asher's needs for school.

which he's starting.

in september.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

'nuff said.