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.

sorry for the absence...

but believe me, you didn't really miss anything. haha

we see cardiology on the 16th for a complete check-up. echo, ecg, pacemaker check, and a holter. i'll fill you in on all of that when the time comes.

as for asher...

he's fine. haha

no, seriously. he's fine. if you watched him, you'd swear nothing happened. he bounced back from this latest episode in no time at all.

physically, that is.

and even emotionally, too, for the most part. PTSD only came out for a little while, and only in a small degree: some scary dreams and disturbed sleep for a week or so, and he's still insisting he's a "little boy" and not a big boy, even when he does distinctly "big boy" things. he did regress a little bit and is back to loving his sucky and "needing" it most of the time, and ok, i'll admit, i was humouring him (read: spoiling him) and letting him have it. but like i told a friend recently, "if he had been breastfed, he'd likely still be nursing, since i believe in natural weaning, and this is a form of stress relief for him, and God knows asher has more than his fair share of stress, so i'm letting him use it for now." i have been taking it away from him for a few hours every day, hiding it in high places so he can't find it and grab it back. haha

but in the meantime, asher's been at home for the last couple weeks. and it's been wonderful! :) we've been baking and gardening and shopping and napping and generally hanging out. and i gotta say,

i've loved every second of it.

maybe it's selfish on my part, but he's just such a delightful little boy! he's so much fun, and he's hilarious, and he's so smart and playful and bright... the last couple weeks have been an endless stream of hugs and kisses and giggles. probably the best couple weeks i've ever had with him. ever.

we were out grocery shopping one day last week, and he was so funny. i don't even remember what he did, but i looked at him and thought, "wow! i'd forgotten how magical 4-year old boys are!" and then it hit me: i never really got to enjoy bram at this age, because asher was in such rough shape. so i was saddened by that. and then i thought, "well, i know a 4-year old boy is very different than a 4-year old girl..." and then i realized that, when blithe was 4, i was dealing with a rough pregnancy, then asher's diagnosis, and we spent most of the next couple years in hospitals and clinics with asher... so i never really got to enjoy blithe as much at this age as i would have liked to, either.

so that's been a bit of a downer for me.

but! i get to enjoy this age now, and it's truly wonderful. not just for the delights of the age, but also... because i have a 4-year-old boy. and that is magical and delightful and miraculous and wondrous and beautiful. when i think back over the last 4.5 years, i am truly amazed and grateful that he's still here, bringing so much light and happiness into our lives. even when the kids are all fighting, and asher's crying because bram grabbed back the toy that asher had taken from him and "brammy doesn't like me anymore!" it's still beautiful.

we've spent the last couple days in the backyard working in the garden (asher was only outside for little bits at a time, due to the humidity). asher had gotten some carrot seeds at mcdonald's (?!?!) the other day, and he was so anxious to plant them... which meant... i had to go find the garden. haha so i've spent two days pulling out weeds and grass, discovering things like onions and wheat (thank-you, birdies), and getting him to "help" me (mostly him pointing to weeds for me to pull and me telling him to watch where he steps because there's a plant right next to your foot no asher the other foot sigh you just stepped on the onion no worries it'll be ok). we've enjoyed the cardinal that lives around here, and asher had fun showing it to the "callapidder" he found and named elmo (surprised? haha). it's been so cute watching him with "elmo callapidder" and "mr squirmy" (a worm... or more accurately, several worms, but when you're 4 they all look alike, i think. haha). "don't be shy, elmo, it's me, ashie!" and "here's some dirt for you, mr squirmy, isn't that nice? now you can eat that all up!" see? adorable. {blissful sigh}

last night, there was a muffin sitting, untouched, on the coffee table. i asked asher to put it back with the other muffins, on top of the freezer. "but i don't want to," he said, and started to walk off. "asher, please put it away now or you'll get a time out and then you'll do it." "ok, mommy!" he said, with a smile (????). he grabbed the muffin and ran off to the kitchen. he came back and said, "ok, mommy, i put da muffin away." somewhat skeptical, i asked, "where did you put it, sweetie?" "in da fridge." ok, so it's not exactly where i'd told him, and i showed him where it was supposed to go, but he was just so cute!!!

i think it's safe to say that i've fallen in love with that littlest man of mine all over again.

now, all this being said about how much fun i've had with him at home for the last couple of weeks....

asher's back at school today. he said he didn't want to go back. in fact, he'd been saying that for a few days. and even this morning, it was, "i don't want to get dressed! i don't want to go to school!" but i got him dressed (in the cutest little outfit! ugh! he's so adorable it's sickening!! haha). got his lunch all packed (thank-you, Blithe, for your help!), and we set off for the bus stops. asher was complaining and complaining... until his bus turned the corner onto our street. suddenly it was, "MY BUS!!!!" and he literally ran all the way to the bus and climbed on and jumped into his seat and only looked back long enough to blow me a kiss good-bye before the bus pulled away. all together now: aaawwwwwww!!!!!!! yup, that's right. he's just. that. adorable.

so, here i sit, alone, for the first time in a couple weeks, in a quiet house, with my laptop and coffee... and i gotta say, as much as i miss that littlest man of mine, it's nice to have some quiet. {wink} and so now, if you don't mind, i'm gonna go outside with my journal and a book and my coffee, and enjoy the first perfectly, beautifully sunny and warm but not humid day we've had all week.

ps - a little boy from our church, little Joshie, was diagnosed with leukemia last week. please hold him and his family in the Light. he's getting his port today, and docs and mom are hopeful that he'll be ready to go home later this week. please pray for them on the long journey ahead of them.

my littlest man is an artist!!!!

asher gave me my mother's day gift this afternoon. have you ever seen anything cuter????

(and just ignore the mess behind it...)

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.

well, today *could* have really, really sucked...

yeah, today could have been better on some levels... but it's nothing a smile and a giant bag of salt & vinegar chips can't fix...

tonight, i filled asher's dad (aka, ed) in on what the principal (mrs h) had told me this morning. at first he laughed (because yes, it is kinda funny...), but when i reminded him that asher accused someone of abusing him because he's mad at her and doesn't like her... he stopped laughing, and said he'd talk to him tonight. (i was working, so he had the kids this evening.) 

and i spoke with asher at bedtime...

i had told ed that the whole thing was a "secret" because asher didn't want to hurt anyone's feelings. so he and i each told asher that mrs j (the EA in question) had been sobbing in mrs h's office when she found out what he'd said.

when asher heard this, he became very sad.

so ed took the kids out tonight to pick up a gift for asher to give mrs j's baby (friday is the last day before her mat leave).

and when asher said his prayers tonight, he prayed, "dear God, thank-You for this lovely with me, mrs e, mrs b, mrs g (his EA, ECE and teacher), and please help me to cheer up mrs j."

tomorrow morning, i'm taking asher in to school, and he's going to apologize to mrs j for saying all this about her.

and we both told him that if he ever pulls this crap again, he's going to be in a ton of s*** trouble. (neither of us used those crossed out words... well, i know i tried not to. and i doubt ed did, either... but i know i was definitely thinking them. haha)

and let's see, what else happened today...

well... my rear tire blew on my way to work. literally, 15 feet from the parking lot. nice.

and then, in the middle of trying to give a customer her parcel, my system shut down. there was a message on the screen about a system error... and it just... shut down. and of course this is when everyone in st thomas decides to pick up their parcels. haha. well, it actually wasn't funny at the time. my system was down for at least 15 minutes. i still don't know what happened... but it would reboot, then shut down. then reboot. then shut down. i'm not kidding... this happened four times. and the line-up getting longer and longer.

sigh...

ok, yes, there was more that happened today, but i won't go into details... because my point, gentle readers, is this:

sure, you can't control what happens sometimes. you just can't.

but

you can control how you respond to it.

i'll admit, at one point this evening, i just wanted to cry when i thought about asher and the EA, and my truck, and a couple other things. and then...

a customer arrived, so i smiled and helped them out...

and suddenly, i didn't want to cry anymore.

yes, i was still thinking about everything that happened today. and yes, it's a lot of stress smooshed into one day. but...

i spent this evening reminding myself to breathe (i have a tendency to hold my breath when i'm stressed). and i smiled at my customers and joked with a few of them... and told my boss that i'll take any extra shifts she'd need me for over the next little while (thereby tackling two of the stressors at the same time)... 

and i remembered that i can't fix my tire when i'm working. and ed can talk to asher, and i'll take the littlest man to apologize to the EA tomorrow. and the computer (eventually) righted itself, and since ed and the kids would have to give me a ride after work, i'd get to see the kidley-winks tonight, and i don't have to pay for prescriptions so dr w can prescribe anything she wants on friday and i won't panic about the cost...

and i remembered to breathe...

and hold each situation in the Light...

no specific prayers. just holding them up. because i don't know how they should be resolved. i just want God to do whatever He's going to do, but keep us all alive in the meantime...

and you know... i got through tonight. and i'll get through tomorrow. and the next day. and the next.

it really is amazing what you can get through if you just breathe and have a little faith...

so much has happened since the last post... don't worry, some of it's great!

this is what happens when i promise to post more often. God hands me more to post about. haha so here we go:

yesterday morning, i checked my email for the eighth time randomly, and there was an email from DC. you'll remember that she is working on a book about my littlest man. she and i have spent many hours talking about asher's journey, and now that that portion of the research is done, she wants to get in touch with some of the doctors and nurses who have "played an integral part in caring for asher (and you)." so she asked me who she should talk to... (sorry, christyne... that should say, "she asked to whom should she speak." teehee)

which docs and nurses should she talk to???? here's the list:

• dr b, our amazing paediatrician (and dear friend)
• dr russell, our toronto cardiologist
• dr j, in london emerg
• dr g, in london emerg
• dr p, who is actually a paeds metabolics specialist, but was the attending in emerg that first morning when asher arrived.
• pepy and buffo. because you can't tell asher's story without talking to them.
• dr b, the toronto cardio who did all of asher's stents, some caths, and has been the attending on the ward for a few HSC admissions
• the first cardio we saw in toronto when asher was 8 days old
• dr f, asher's nephrologist
• dr a, who knows us very well. he got asher the GJ-tube, we've seen him in emerg, he's been the attending on the ward during admissions, he has sedated asher a couple times, i dealt with him in his administrative role... and the list goes on. (those of you in the know are peeing yourselves right now, aren't you??? HAHA)
• sarah m, the nurse who was there when asher first came to london emerg, and whom we saw in emerg several times, and who did her NP training in the cardio clinic, and who is now the enteral feeding NP. yup, lots of dealings with her over the years.
• Jenny and Paula, the single ventricle NPs at sick kids. they had our number memorized and would return my pages with just a "hey heather, what's he doing this time?" and a sigh when i filled them in.
• vicky and elaine, our home care nurses. they were amazing. and i mean, a. ma. zing. asher and i would both be dead if not for them. they were excellent at their job, and truly cared for us. they're both absolutely lovely, and asher's story is not complete without their input.

as i finished up this email to D, i realized that in calling all of them, she would run into a problem: patient confidentiality. which is a good problem, don't get me wrong. i'd hate to think that any random person could call up one of asher's docs and get any and all information they wanted. so hooray for confidentiality!! on the other hand...

it does pose a problem to someone writing a book about my littlest man.

so, i have been chatting with some london docs and sarah the NP to let them know about the project, and that i have no problems with them speaking with D. i also emailed dr f just now, and i spent some time this morning speaking with vicky, as well. i also emailed pepy and buffo last night, and as i type, i am on the phone paging the single vent NP on call (not sure if it's jenny or paula. haha) so that's that issue...

but, in a tangentially related note... 

when i popped in to talk to dr welisch yesterday, she asked how asher is doing. "well," i thought, "i'm just waiting for him to get bad enough to bring in, but he does have some symptoms, and she did ask and she is his cardiologist..." so i told her. i told her about the flu the other week, and the paleness and blue spells and puffiness and irritability, and she said,

"well, why don't you bring him in on friday and we'll do a quick check." [insert wave of nausea]

and of course, we book the appointment, asher comes home from school, and...

he's hiccupping.

"so?" i hear you asking.

well! those "in the know" about wonky heart and gastro stuff know that hiccuping can either be nothing... or it can be something. well, not "something" in and of itself, but a symptom of... wait for it...

reflux.

(and angina, but we're not going there right now.)

at first i brushed it off. i mean, sometimes i get the hiccups and i don't have reflux.

but then it happened again a little while after he had snack. so, i decided to just ask him how he's feeling. not lead him or put ideas in his head. just a little, "hey, dude, how are you feeling right now?"... you know... just to see...

and hoping it's nothing.

he said,

and i quote,

"not good, mommy."

[insert wave of nausea]

"what do you mean? where do you feel sick, sweetie?"

"my heart hurts, mommy."

[insert wave of nausea]

ok, so now i'm going to be a little more specific in my questions:

"does your heart feel tight? like it's being squeezed?" 

"no, not like dat."

"does it feel hot? like it's burning?"

"yeah. like it's burning."

now, ordinarily, reflux/heartburn is not a big issue. and a lot of heart kids (and adults with heart disease) have reflux. 

(ever wonder why, by the way? there's a spot at the top of the stomach, right where the esophagus joins to it, and it's called the cardiac zone. when a heart is failing or distressed or recovering from surgery, the heart muscle becomes enlarged, just like any injured muscle. when the heart becomes enlarged, it bumps up against this spot on the stomach and annoys it. the problem is, this spot is right beside the valve - or more correctly, the sphincter - that allows food etc into the stomach and then closes to keep stomach contents... um... contained... in the... stomach... wow, that's pretty redundant there, isn't it? anyhoo... when the cardiac spot on the stomach is being bothered, the sphincter there has a hard time closing properly, which then allows stomach contents to go shooting back up the esophagus. because stomach juices have a pH level of about 2 - it's a shockingly strong acid!! - and the esophagus is not designed to withstand that sort of assault, the acid burns the esophagus. and this happens in the vicinity of the heart... hence the term, heartburn. and there you have it, folks, Reflux 101.)

and so, ordinarily, i wouldn't be worried about reflux, even in asher. but... when i look at the other symptoms... yeah... i'm not freaking out... i wouldn't even say "worried," per se... but i do think i made this appointment with cardio just in time.

sigh.

and let's see... what else has happened today... ah yes!!

i spoke with the school's principal this morning, regarding the "incident" from friday. she has looked into it, and apparently...

the EA in question...

had no contact with Asher on friday.

other than in the afternoon when he saw her and flipped out. but she didn't deal with him in the morning.

but...

it turns out...

asher doesn't like her, and he's angry with her.

"why?" you ask?

because, you see, she takes him to the bathroom when she has him. and asher... doesn't always want to go to the bathroom.

and when he's irritable like this...

it's best not to mess with him, apparently.

because he'll tell people that you pushed him.

so, there was no incident on friday. but we think we have an idea about where this came from:

you see, when asher needs to pee, even if it's an emergency and his bladder is about to explode, he will take his sweet time getting to the little boys' room. he'll stop to chat with people, play with toys, whatever. but this EA at some point must have put her hand on his back and tried to guide him to the washroom... when he didn't want to go. and so, "of course," in his mind, this is pushing. 

and since he's mad at her, he told his own EA and me that he was pushed.

which, of course, leads to an investigation and all kinds of things.

sigh...

so, it would seem that my sweet little cherub... well, i'd say he still has a halo, but maybe it's a little tilted, dented and tarnished. haha-ish

so, asher and i are going to be having a little chat this week. because this behaviour is absolutely NOT OK. and yes, disciplining him is not easy right now... i mean, how do you discipline a kid who'll have a heart attack if he cries too hard?? but i'll figure something out, because this sort of thing cannot. happen. again. it just can't. 

so that's what's new in our little corner of the universe today... (hopefully) there won't be anything to report until friday afternoon after cardio. (but you know i'll post if necessary. haha)

k, it's been a while...

yes, yes, it's been a while, and i haven't posted a "real" asher update. so here we go.

a couple of weeks ago, asher was looking "off." he was pale, short of breath, sleeping more than normal... just not his usual self. so i took him to see our wonderful paeds, who checked him out, and...

his sats were 92%!!!!

this time last year, i would have been thrilled (and a little concerned) to see sats like that. but now?? post-fontan? now that all his blood goes to his lungs? um...

not so much.

his heart rate was also over 100. much higher than his norm, since he usually rides his pacemaker and his HR is 80 to 85. so that was concerning.

when she listened to his chest, she thought it sounded pretty nasty. so she sent us down for a chest x-ray, and when we got back up to see her, she had looked at it and she said it looked "yucky." yes, that's a technical medical term which means "not good." by this time, his sats were back up to a nice 96%, so that was better, and she offered to admit him, and it was tempting, but we decided that he would go home and come back to see her the next morning. she also ordered a nasal swab, just to check for viruses etc, and prescribed a dose of Tamiflu for the day, just in case it was the flu.

the next day, she gave the bad news that his swab was indeed positive for the flu, so it was tamiflu for the next 6 days.

he recovered nicely.

and i discovered something interesting: apparently, since i work at shoppers...

I DON'T HAVE TO PAY FOR PRESCRIPTIONS!!!!!!!!!

how awesome is that?!?! especially when you have one child who needs a week of tamiflu (at roughly $5 per pill), and i needed antibiotics and steroids to treat a bad case of strep (yes, my throat closed twice), and bram needed a new ventalin inhaler, some antibiotics and steroids to treat a super-bad asthma attack (an ambulance ride, chest x-ray, lots of steroids, sats at 88-93%, blue lips/eyes/nose/nails, and a ride in a wheelchair - the highlight of the evening for him, especially when he found out that asher has never ridden in a wheelchair!). yup, it's been a medically-eventful month around here, and would have been rather expensive, too, if i didn't work where i do. :)

but back to asher...

since he had the flu the other week, he... um... yeah... hasn't been great.

in fact, i'm kind of playing chicken with him right now...

for the last couple of weeks, he has been very pale, there's been the odd blue spell (as in... ahem... once a day...), and he's puffy, and well, a little irritable. it's not super bad right now, not quite at the point where i would take him in to be seen... but... i hate to admit this, but... yeah... he's getting there.

it's not the symptoms that are bothering me (entirely). it's the fact that they've continued for so long, without getting better. so expect an update at some point this week about a trip to emerg or clinic.

and there's another thing...

i got a call from the school yesterday, and apparently, there was an incident with one of the EA's (educational assistants). asher has his own EA who is with him all day, but there is another EA who covers her breaks twice a day. and yesterday afternoon, when she came to cover mrs e's break, asher got very upset and refused to go with her. he wanted nothing to do with her. so after some questioning, it turns out that something happened with her in the morning.

i won't go into all the details, but suffice it to say... that EA won't be dealing with asher anymore.

the whole thing was probably nothing, and she didn't intend to do anything. and with asher's increased irritability, it may be exaggerated in his mind. but the fact remains that it was an issue to asher, and it was enough that he got very upset when he saw her.

i discussed all this with the principal, and she will discuss asher's most recent cardiac status with all the EAs on monday and she will speak privately with the EA in question and find out her side. but mrs h (the principal) will make sure she understands that someone else will be covering mrs e's breaks from now on.

the principal also offered to report it to CAS, but i turned that down... initially. but when i questioned asher about the incident when he got home... he said "it's a secret" and initially refused to talk to me about it. frankly, that concerns me, and i'm now thinking of taking her up on her offer to report it. i don't want to put asher through any more, but seriously??? this is a medically fragile child with decreased cardiac stability, and someone who should have known better did something she shouldn't have. and whether it was intentional or not, i don't care. it shouldn't have happened. at all.

so that's the most recent goings-on in asherland. not a super-exciting post, but i thought i should get you all caught up.

i'll try not to go so long between updates from now on.

but since the universe doesn't revolve around asher and the rest of us here...

i'd like to ask you to pray for asher's friend brigid and her mom allison. brigid is in the hospital right now with sepsis, and on top of the usual sepsis issues, she is also struggling with some complications from the treatment. these complications are terrifying, and allison is very shaken by them. i won't go into the details, but it's scary. please please please pray/light a candle/cross your crossables/send good vibes for brigid and allison. they really need them right now. thank-you. and allison and brigid, i'm holding you in the Light, and i love you both very, very much.

it's asher's first FULL day of school today...

so, of course, i'm blogging about it. (did you expect me to not post here about this?)

asher has been doing very well in school. he is loving every minute of it... or... um... almost every minute of it.

on his second day, he was sad and crying in the morning, so his EA took him over to see bram, who gave him a big hug and made asher happy. i loved to hear about how supportive my older kidley-winks are with their little brother. it makes my heart go up, it really does.

so this morning, i was getting the kids' lunches ready, and asher came into the kitchen. "what are you doing, mommy?" "i'm making your lunches for school today, sweetie." to which he replied, and i quote,

"I NOT WANT GO TO SCHOOL, MOMMY!!!!!"

"what? what's wrong? don't you like school, hun?"

"no. i not like school anymore."

"how come?

"because day get mad at me."

"you mean when you wanted to play on the computer and they said 'no'?"

"yes. day get mad at me."

now, let me explain this. on friday morning last week, mrs b introduced the new centres that hadn't been opened yet. one of those centres was the computer. asher, it would seem, wanted to play on the computer right away. they told him that he would have to wait for his turn. anyway, this was not what asher wanted to hear, and well, in true asher-doesn't-know-crying-is-bad-for-him form, he got upset. and so, today, he not want go to school because day get mad at him. {rolls eyes} i tried to tell him that he will get a turn, and he'll be spending a lot of time on the computer, probably starting this week, but nope. he not like school anymore.

now, all that being said, i got him dressed without incident this morning, and we piled into the truck and when i dropped the kids off at school, he grabbed his backpack and ran after blithe and bram, who were taking him to the kindergarten doors. no complaints, no "i not want go to school," nothing. just smiles and running off to his class.

now, you may notice in that last paragraph that i drove the kids to school. "but, heather," i hear you asking, "why isn't asher going on the bus? were you running late this morning?" haha you'd think so, but no. i got up after only 4 hits on the snooze button (roughly 7:40), and everything was running smoothly and on time. so that was not the issue... today. (why, no, i love mornings. why do you ask?)

asher had been taking the bus to school. and then the school called one afternoon last week, and he will need to be on a special bus. he will have a car seat and get picked up and dropped off right at home, and there will be someone on the bus who can watch for asher's, well, asher-ness. it's just that the regular school bus isn't a safe place for him. and frankly, that's fine with asher. because he "not like da bus. it scary. dare too many people dare." so i'm hopeful that the change to a different busing situation will be smooth and asher will adjust well.

now, on a different note, asher decided on friday that he wanted to play on the computer. i set him up with his favourite site, and he said, "mommy, i not need help." and you know what? he didn't!!! he just played away on the laptop for almost an hour, perfectly content, clicking away all on his own. he did amazingly well. as he sat on my lap, i watched in amazement as he handled the somewhat-tricky finger-pad-thingy and clicking the button there, making pictures, playing songs, putting animals in the appropriate habitats... it was truly incredible. i was so impressed and proud.

maybe it's not such an impossible dream that he'll be the next bill gates or steve jobs... and i'll now add to that dream that asher will keep me in the lifestyle to which i would like to become accustomed. ;)

the second intake meeting... after, you'll note, they have... uh... taken asher in...?? somehow that doesn't sound right...

well, the meeting happened this morning at 9am. there was the principal and the VP, the primary LST (learning support teacher for primary grades), the special education director-type from the board, asher's teacher, asher's EA, asher's paediatrician, asher's dad, me, and asher (though his contribution was mainly entertainment and some confusion, since how could we be possibly describing this child?? he looks so normal!!). here's how it went down:

we started with a run-down of his medical issues, and dr b went system by system, starting with heart. and yes, we got some of those reactions when she said, "basically, he has half a heart." you know the reactions i mean: the face of "shock." is it weird that they amuse me sometimes? (maybe i'm just too used to that phrase.) so that took a while, as you can imagine. and so the plan for the heart/pacemaker issues are this:

• asher will wear his protective vest at all times. period. because you never know.
• call mom.

we had to fill everyone in on a few things. the LST  asked, "how will we know that he's going to faint? what sort of things should we watch for?" to which dr b and i replied, "you won't know. he'll just faint. but as soon as he's horizontal he'll wake up. it will happen when he's playing normally. and he'll just faint." you can imagine the looks we got for that answer. we also mentioned that asher is fine if he's pink or pale, and that he shouldn't turn blue anymore, so if he does, to call me, and that if he turns even faintly grey, call me immediately. don't even question; just call me. grey = bad.

when it comes to asher's immune system, it is slightly deficient (meaning, he lacks the generals that lead the troops into battle), but that he doesn't seem overly bothered by it. he hasn't had all the nasty infections that you would expect from a child with an immune deficiency, but... if there is any outbreak of anything in the school, let me know immediately, because even something simple can cause huge problems for asher.

asher's UTI habit came up, as well. the instructions for that were to let me know at the end of the day if he's been peeing more. we will have a communications book that travels with him between home and school, so they can fill me in.

but since we're on the subject of peeing... i reminded them that he is not fully potty-trained. he's poop trained, but he is still in pull-ups. this is due to the fact that a child on diurretics, who has always been on diurretics, is, well, difficult to potty train. he simply doesn't know what it is like to "have to" pee. he just pees. a lot. (oh, wow, asher's gonna kill me for this paragraph when he's older. LOL)

then we discussed the bus. ah, the school bus, bastion of normalcy. they didn't question the decision to send him on the bus, but they will make sure that he gets a medical tag to put on his backpack, so that the driver will know that he has some issues. the principal is working on getting that from the school bus company as soon as possible.

but i was delighted to hear that yesterday morning, the principal (mrs h) met asher as he arrived, and that he tried to jump off the bus. he was just that excited to arrive at school! if you know him at all, you likely aren't at all surprised to read that. and frankly, neither was i. he was sooooo excited to be a big boy going to school and riding the bus. honestly, if she had told me that asher simply climbed off, i would have been surprised. he's just not that mellow. haha

the other issue with bussing is this: when asher arrives at school, blithe will hand him off to his EA who will bring him into the school immediately. he will also have a space for his bag, coat, etc separate from the other kids. this is to avoid bumps, since that risk is highest (for everyone, actually) at in and out times. so asher will be safer in his own little area. and if the bus is late arriving, he and the EA will simply wait in the hall or outside until the rest of the kids are out of the cloakroom. also, at the end of the day, the other students will go and get ready for home, and then it's asher's turn, once they're outside. again, the risk of getting bumped is too high at this time for him to be safe, so he'll get a few extra minutes of playtime at the end of the day.

he will be allowed outside, but only with a few other kids at most. he will absolutely not be allowed onto the playground equipment (due to risk of bumps and seizures). it is simply too dangerous for him. but he is allowed to ride a bike in the kindergarten play area, so long as there is an adult and very few other children (if any). he will be staying indoors for most recesses.

as for phys ed... well, that's not an issue. because he won't be doing it. he will go into the computer lab when the rest of his class goes to gym. i'll admit, this is one of the areas that upsets me the most. he's so active, and he just sooooo wants to be normal because he is normal, and yet he won't get to participate in gym with the other kids. that's tough for me, but i know it's for his safety, so i'll accept it. i understand the reasoning, and i'm glad they're taking this seriously and making sure that he is safe. it's just that phys ed is too dangerous for him. those little kids can be too unpredictable, and so is asher. so it's a potentially bad combination. so there you have it. and on the plus side of this, asher is going to be the most computer-literate 3-year-old ever. (maybe he'll grow up and  become the next bill gates or something. that would be awesome.)

we addressed the issues of his seizures, as well. these can be anything from a tonic clonic (sp?) seizure, with the shaking etc, to an absent seizure, when he just goes blank and unresponsive. this is one of the things that makes the playground so risky: if he has one of these seizures while climbing, he'll let go and fall and then... badness will ensue. i will be contacted if/when he seizes.

we discussed his migraines, as well, with this caveat: his migraines just start. there's no build-up. he'll be fine, and then he won't be. he will suddenly become lethargic, irritable, grey, confused and have a very high fever, which may or may not include seizures. so watch out for that, and call me if/when it happens. and if/when it happens, they are to give him a whopping dose of advil. and then call me.

we made sure they were very aware that asher gets very sick very fast. we laughed when i told them his nickname, "asher crasher." but i told him that he's earned it. he'll be fine one minute, and the next, he's at death's door. this is how he gets sick, regardless of what the problem is. we also told him about his "sick" language: he'll say something if he's dizzy, so there shouldn't be too much confusion there. but i also said,

"the other thing you need to pay attention to is if he says he's feeling 'much better.' he knows when he's sick, and he knows that means he'll go to the hospital. and he doesn't want to go to the hospital. so he says 'i feel much better' when he's sick. and if he tells you that, call me right away." they seemed surprised by that little nugget, but since we moved from that on to PTSD, they understood quickly.

and so, i move on to PTSD. they need to be aware that he may have some difficulty adjusting at times, that he may get very upset and just want mommy or daddy. at those times, call the appropriate parent. he is in play therapy to deal with that, and when he's in therapy and is handed medical-looking toys, he buries them in the sand. so in his classroom, there will be no hospital centres or doctor kits or anything. we want to make sure he has a happy time in school, so we're just going to avoid those triggers completely.

his teachers are going to talk to the students in his class in the simplest, non-discriminatory terms. they will tell the students that asher may need some help from time to time, and that if something happens like he falls down, they need to tell a teacher right away. if they do this, they will be helping asher. they won't be going into any real detail, but for example, when asher faints, it happens so quickly that a teacher simply might not see. but the other kids will see it, and this is how they can help asher and be a good friend to him.

asher will also be assessed by OT due to his oral sensitivities/needs, and PT to see if there are any activities the EA can do with him in order to help with gross motor development in place of phys ed. the wait for these assessment is relatively short, so this will happen fairly soon.

all in all, it was a good meeting. very productive, and we're now all on the same page. we filled out the forms for him, so that they can give him meds and post his info for the teachers and in the teachers' books, so everyone will know him. asher also got his picture taken today, so all the staff will know what he looks like. generally, i'm happy with the plan. again, the plan to keep him out of phys ed is mildly upsetting to me, but i understand the reasoning and i'd rather have him safe than happy, if those are my choices. our goal is for asher to have a safe and happy time in school, and i think we have a plan in place that can give him that. i'm pleased with all of this, i really am. i can't wait for him to go back tomorrow. he's going to have a wonderful time in school this year!

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. :)

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