Monday, September 27, 2010

the mind of a 3-year-old

for his after-school snack today, asher had apple slices. as i type this, the apple slices are on the floor.

ME: asher, can you please pick the apple slices off the floor?

ASHER: but dat not me. day do dat demselves.

mhm. the apple slices jumped out of the baggie and landed all over the floor... by themselves. yup.

Wednesday, September 22, 2010

i think some EEG leads would be helpful to have around the house [wink]

so, asher went for an EEG this afternoon. it was interesting.

i picked asher up from school. he'd had a great morning! he went to the gym with another little boy and they played with frizbees, and asher LOVED that! he was talking all afternoon, "i hab da red fizbee, mommy. also, da udder liddle boy hab a pink one. and we frew dem around. it was fun, mommy!" i have to say, i'm glad asher is still getting some phys ed-type activity. as much as he loves computers, i'd hate to think that they would simply replace phys ed with a desktop. so he got to run around and play in the gym with another child, and that was awesome. he also made a nice little craft this morning with yellow cardstock (that's my boy!) and some scissors (fine motor skills extraordinaire!) and glued the pieces together to make an "airplane" for himself and a "car" for me. as you might expect from a 3 yo, they looked nothing like an airplane or a car, but he was excited about his craft. he's doing so well in school, it's just wonderful to see how much he's maturing and growing up after even a couple weeks in school. honestly, it makes my heart go up. waaaaaay up!

and then we went to the hospital for the EEG. as he was sitting in his seat behind me in the truck, i checked in the mirror and he was staring out the window. so i reached back to tickle his leg (just ignore the bad driving habits and keep moving along in the story, people, there's nothing to see here). and his response? he stared out the window.  so i tickled him again. still staring. so i called his name. still staring. after several more seconds, he started playing with his pacer protector.

and that, dear reader, is how one describes an absence seizure, aka "petit mal" seizure.

now, i have to be honest here. i'm having trouble with this diagnosis. maybe it's that it's still so new, maybe it's that i don't know enough, maybe it's how powerless i feel when he has these seizures. and he's having so many. i've been noticing at least 2-3 a day now. and then that makes me wonder... how long has this actually been going on? i never really paid attention to it before, because i never knew to watch for it. but now that i recognize it, it happens so often... and there's nothing i can do about. i just have to roll with it, document it, watch for things like eye twitching, make sure he doesn't drown in the tub, but other than that, there's nothing i can do. i'll get past this, i know i will. i had the same fears in the early days, when asher was newly-diagnosed with HLHS. but i adapted and learned and i no longer feel helpless and guilty and powerless and afraid when it comes to asher's heart. but this is his brain, we're talking about. i guess i've always figured that the heart and brain are the two organs you want healthy, for some reason. not that the others aren't important, too, but i think i've always taken comfort in knowing, sure, his heart's pretty wonky, but hey, at least his brain is ok.

and now, his brain is not ok.

again, i will get past this. i know it's not his major health issue, so i take some comfort in that. meanwhile, please pray for me a bit that i can get past this.

ok, so on to the EEG. we arrived at the hospital and and asher handed the clerk his cards and we were registered. asher was pretty disappointed that they didn't have stickers to put on his hospital card. (he likes to collect stickers on there, and he only has one right now. his old card, which one clinic kept, had about seven!) and off we traipsed to the lab.

they took us straight in, and asher was delighted to see all the nemo and fish stickers on the wall. his faves were Dory and the dolphins jumping out of the "water." while the lady put all the leads (23 of them!!) on his head, he was quite the little chatterbox. it was so cute! he told her all about school, blivey and brammy, and smokey and the kittens. the tech asked me at one point, "is he always this well behaved?" "he's used to tests," i answered. and then the test started.

now, for those of you who have never experienced an EEG, you have to be very still and quiet. for the whole test. which should take about 40 minutes. and knowing asher and his energy levels, i was afraid we'd be there for hours. well, guess what!! the test took about 40 minutes!! he had to lie still, which he did, for the most part. we only had to tell him three times to stop moving and close his eyes, which surprised me... and didn't surprise me (see "he's used to tests" comment above). but his favourite part of the whole test was the strobe light. he was almost laughing out loud during that part! but he didn't, and it went well.

so now we just wait for the results. and a note about the results: if it's positive, it's positive, and they will know what's going on in that little brain of his. if, however, the results are negative... yeah, that means nothing. haha apparently, there's a 50% chance of a false negative with an EEG. the neuro told me about a patient of his with severe epilepsy, and it took eight (count 'em!) EEGs for anything to show up, even though they knew she was having seizures frequently. gosh, isn't that reassuring. haha know what's nice? tests with actual answers. i like those. they please me, on some weird level i don't fully understand. ok, i lie. i know exactly why i like answers. ready? here's why: because they're answers. and then we know what we're dealing with, and i can read up and watch for symptoms or whatever, and we can do something. ok, mostly it's because i get to learn new stuff. i like that. it's just so interesting!! sure, it's a bit horrifying and nauseating, but it's interesting, too. (which really just confirms what i've been saying about myself all along: i'm a nerd.)

so now, given how calm and quiet asher was during the test... do you think they'd give me some EEG leads - just the leads, not the whole, um, test-doing-contraption-thingy (where's a dictionary/thesaurus when i need one?!) - to have at home? you know, for when asher's all wound up and running around like the tasmanian devil/energizer bunny that he is... it might buy me 40 minutes of quiet... sigh... a mom can dream, right?

Monday, September 20, 2010

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,


"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. ;)

Monday, September 13, 2010

"mommy, you make percy beautiful for me?"

i was asked to "make percy beautiful" with pale green sidewalk chalk.

asher approved of my work.

Sunday, September 12, 2010

God aka our Refuge

i was asked to share a little bit about the "asher journey" this morning in church. and when i say "a little bit," i mean... i was limited to 4 minutes!!! gah!!!! how to squeeze everything i wanted to say into such a short time?? but i managed... i think... i kind of ignored the clock. anyway, it was an interview, and while you all know the answers to questions 1, 2, and 4 (tell us about your situation; what has your journey involved, and how is asher now?), i want to share my answer to the third question.

what are some practical ways in which you have accessed God as your refuge during your journey?

it's an interesting question; i don't usually think about it so specifically. i just kind of do it without thinking about it quite like that. but i guess i would say that, for starters, as a single mom, i have been gifted with a lot of time alone. so i can spend that time thinking, praying, journaling, reflecting... that time with God allows me to rest, even in the scariest times.

the second thing comes from a rather morbid conversation i had with a dear friend when asher was about six months old. asher was very weak, very sick, and i knew in my gut that he was going to die in the OR. my friend said to me, "yeah, he might die during the surgery. but he might not. you don't know. you have no guarantees with him, but you have no guarantees your other kids will grow up, either. they're fine now, but things can change. you just don't know what will happen." and believe it or not, that conversation, as gut-wrenching as it was, opened my eyes to the reality that i really don't know. i don't know why asher was made this way, i don't know what the purpose is, but God knows, and that's enough for me. i don't see the bigger picture, but God does, and He is in control. that's really comforting, because i know that i don't need to control everything, and i don't need to know the future.

finally, when asher was two months old, he was in the hospital. he was pretty sick, but no one could figure out what was going on. so one night, i asked God to heal asher. you know, the "big H" healing. and as clearly as i hear you today, i heard God say, "no, that's not the miracle I'm going to do here." so i've gotten to spend the last 3.5 years looking for the miracle. and God promises that if we're really looking for Him, we'll find Him. and i do! He's everywhere in this journey. and so, in those times when it's dark and scary and it feels like God has forgotten us - because those moments happen; it's not all sunshine and rainbows - i can look back and see that God was there and there and there and there and there, and that gives me the courage to not look forward - because i can't - but i can look around and look for God in the current situation.

there you have it, folks, for those of you who missed it this morning. it was a great morning; i talked with so many people after the services, including a single mom with three kids (now grown), and a heart family with the father and son with Tetralogy of Fallot. it was a wonderful morning, and i'm very, very grateful for being given the opportunity to share some of this story. thanks for interviewing me, ron, it was a great experience! 

Thursday, September 9, 2010

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!

Wednesday, September 8, 2010

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.


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. :)