how AMAZING!!!!

can you believe that

on thursday...

4 days from today...

ASHER TURNS 4!!!!!!!

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

Asher is alive.

and

Asher is stable.

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

ALMOST 4!!!!!!!

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. :)

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

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

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

which he's starting.

in september.

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

'nuff said.

Asher's 3!!!!!!

asher's cake. he was so excited that it was elmo-ey. (fyi, everything has "-ey" at the end now. "caboosey," "brammy," "blithey," thomas-ey", and so forth. lol) the cake was made with love by nana (my mom).

the birthday boy, so happy with his candles.

look! he eats!!!!

asher wanted another piece of cake. specifically, elmo-ey's nose. but of course, he's not allowed more if he still has some on his plate. solution? put what's left of piece #1... on mommy's plate. no one will notice. LOL ah, well, it's his birthday. we'll humour him tonight. :)

(asher's b-day is actually wednesday, but we celebrated today because he's with ed on wednesday. and he doesn't know it's not really his b-day. he got an elmo cake, elmo lego, and thomas videos! who cares what day it is!!! LOL)

HAPPY THANKSGIVING!!!!!

we had a wonderful thanksgiving this weekend, full of family, and community, and generosity. and of course, lots and LOTS of food! in fact, at this very moment, i have a fridge full of leftovers, and pot of turkey soup on the stove (which i'm making for the first time in my life! i hope it turns out ok!), and three very tired children (and one very tired doggie) all sleeping peacefully in my house. :) it was such a special weekend for us, and i hope yours was just as memorable. :)

happy thanksgiving, everyone! :)

(and yes, that's a pumpkin hat, which asher found downstairs at Nana's and wore upstairs... and he walked into the dining room with a huge grin on his face, so amused with this hat!! LOL)

i'm sure we set a new record today... Fastest Clinic Appointment Ever!!!

ok, i realize i haven't been keeping the blog very up-to-date recently. my bad. but there's a good reason for that. there's been a lot going on. i'll do a quick list, and then tell you about today's visit.
1. we've been going to SickKids every 2 weeks lately for clinic, to see the cardio Dr R, check sats, blood pressure and heart rate, and to up-titrate the carvedilol (beta blocker, used to regulating rhythm).

2. we've been to emerg a total of 4 times in the last 4 weeks: "raging" ear infection, blue spells and sweating and other CHF symptoms, double ear infection, tube infection with puffiness.

3. a trip to the paediatrician (but not our doc... it was a doc who doesn't know me) for a tube infection. he prescribed keflex. which, you'll note, has never worked for asher's tube infections. and this time was no exception, hence the trip to emerg for a tube infection (when we got cipro, which worked, but see #4...)

4. a trip to Interventional Radiology, because the cipro clogged asher's feeding tube. and it was far and away the most traumatic tube replacement we have ever experienced. :(

so that brings you up to monday... now for today's news (and pay attention to the timeline):

4am: heather hits snooze.

4:09 am: heather hits snooze.

4:18 am: heather realizes she has hit snooze twice now, but doesn't remember the first time. lol heather reluctantly hits "alarm off" and stumbles to the shower.

5:09 am: heather (showered, dressed, with some, but not all make-up on yet) and asher (in jammies) pile into the tek and hit the road.

5:13 am: heather is handed her most beauteous mandatory pre-road trip timmies (extra large black, for those who are curious), and hits the road.

6:33 am (believe me, i checked specifically b/c i couldn't believe it!!) heather finds herself in VERY heavy traffic on the 403 by hamilton!! at 6:33AM!!!!! shouldn't people still be in bed at that hour?!?!?!?!?!?!?!?!

7:54 am: heather, asher and tekkie find lovely parking spot on P1 in the sick kids sub-terranean parking lot. all are pleased.

8:45 am: heather and asher register for cardiology clinic.

8:51 am: nurse siobhan calls us in. no weight, b/c ash was weighed in emerg last week (14.0 kg! woohoo!!!!). and the numbers that will only mean something to some of you, but those who understand will want to know:

sats: 79-80% (lower than his usual 85%, but acceptable). HR: 104. BP: 103/60.

8:53 am: dr r enters. everyone discusses asher's numbers, and heather adds that lately his HR hasn't been higher than 125. dr r asks about blue spells, and heather says, "still a few every day. and he's been very blue and irritable since his very traumatic tube change on monday."

8:54 am: heather turns green as a wave of nausea sweeps over her.

oops! sorry, missed one:

8:53:37 am: dr r pauses, then looks at asher and says, "asher, you just like being a mystery, don't you?"

8:55 am: heather asks dr r if the plan is still to do surgery in the next couple of months. dr r answers that, although he 14 kg is a good weight for the surgery, they like to leave kids on the full does of carvedilol for a few months before proceeding. so that would mean another cath in august or september, when they will check the pressures and measurements, and then book surgery based on what they find.

8:55:17 am: not being accustomed to receiving good news from a cardiologist, heather suffers a small stroke. CATH IN AUGUST OR SEPTEMBER!!!!!! WOOOOOOHOOOOOOO!!!!!!!!!!!!!!!!!!

8:55:19 am: heather asks dr r if the plan is still to reconstruct asher's aortic arch a week prior to the Fontan. dr r explains that opinions are divided on that, since the pressures were so high last may, but now seem to be better. so they'll check again in the cath, and decide then.

8:57 am: heather regains consciousness.

8:59 am: heather and asher leave the cardiology clinic, next appointment scheduled for two weeks hence.

9:01 am: heather and asher get back on the elevators and go back up to 4A to get their parking ticket stamped, so as not to pay $30 for parking. $11 is much better.

9:12 am: heather, asher and tekkie pull out of the SickKids subterranean parking lot and out onto elm st and into the sunshine.

there you go. that's our appointment today. short and sweet. just the way i like 'em. :)

YAY ASHER!!!! YOU'RE 2!!!!!!!!!!!!!!!!

so, for those of you who are not keeping track (and i can't imagine anyone who follows this blog not keeping track!),

TODAY IS ASHER'S 2ND BIRTHDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

i have way too many pics to post here, so i'm including in this post a link to the facebook album i created for this event. the pics are wonderful.

it was the best birthday i've celebrated in, oh, i don't know, a year! only, i think this one was better. no big party, just some friends, some family, and oh, yes, my friends,

SOME CAKE!!!!!

there's a reason i've labeled this post "real honest to goodness normalcy."

(and yes, i'm aware i haven't posted here recently. there's a bunch of reasons for that. but i'm saving that for another post, and in it i will regale you with tales of my battle with CCAC, who WANTED TO CUT OUR SERVICES TO ONLY NIGHT NURSING!! but again, that's a post for another day. today, we celebrate asher. so, here's the link. enjoy!)

oh, and anne: when i brought the cake out and put it on the table, asher took one look at it and said, clear as day, "cake." that's my wordy boy! :)

the facebook link:
http://www.facebook.com/album.php?aid=64789&l=d2f94&id=593667512

Happy Hallowe'en!

happy hallowe'en, from our little pumpkin (oh, yeah, and the rest of us, too).

i was so touched by this...

blithe had a hard time at school today. once we got home, she broke down and cried on the kitchen floor. i scooped her up and held her. her heart was broken, and it hurt.

i held her as she cried. then something wonderful happened. just typing this, i have tears in my eyes. (get a tissue, then come back and finish reading... got one? ok.)

asher came up to blithe, put his hand on her arm, and leaned over to hug her. he held her for a moment, then stood up and signed "sorry." it was breaking his heart to see his big sister so upset. then, he pointed and said "tin" ("train"), and looked back at blithe and said "glithe" ("blithe"), then pointed back at the train and said "tin" and back at blithe, "glithe." then he took her hand in his and led her over to the train, where he played with her.

with everything he's been through, he has learned compassion and mercy. what a special gift for all of us, to see this beauty in my boy. and tonight, what a special gift for blithe.

i don't care what any doctors tell me, asher has the biggest heart of anyone i know.

something normal... and it was wonderful!

i took the kids to Springwater for a nature walk yesterday. it was wonderful. the weather was perfect for a hike: cool, with no rain in the woods, not too bright, not too dark, absolutely perfect!

i wore asher in the sling yesterday, too. i haven't been able to do that with him. i think he only ever went in the sling once, and he threw up all over me (obviously before we had his reflux under control!). so this whole time, he's been in the stroller. but let me tell you, it's not easy taking a stroller for a hike. so, i decided to wear him, and then he could walk for a bit, too.

it was nice to wear him. i wore the other kids so much, and i've been feeling a bit like i've been missing out a bit. i just haven't had nearly as much "cuddle time" with asher as i'd have liked. but you know what? he loved the sling!!! he spent the whole time chatting with me, pointing out things he saw ("tee," "chi-uk" [chipmunk, for those unversed in toddler-with-throat-issues-speak], "eef," "bam bife" [bram and blithe, according to asher], and of course, "mummum" which is what he calls me... awww!), giving me hugs and winks and loving every bit of "mummum" time. and i wasn't complaining, either! :) it all felt so normal, so simple, so perfect.

a couple times he wanted down from the sling, so i obliged. you can see for yourself how much he enjoyed that. [dr bertoldi, stop reading for a minute... just skip ahead a couple sentences... you don't need to read this next bit. i'll tell you when to start reading again.] but he was so short of breath, he'd be huffing and puffing pretty fiercely within a minute or so of walking, which isn't so normal for him lately, but i'm going to tell myself that hiking is more strenuous than running around the house. yeah, that works. [ok, dr b, you can start reading again.] he loved chasing after blithe and bram, and the older two loved being able to sit on the ground with him and look for acorn caps. [yikes! paeds should probably ignore that sentence, too. kids with no t-cells shouldn't really play in the dirt. so, dr b, just ignore this whole paragraph. thanks. lol]

it was, at least by my standards, a perfect morning. and i hope we have many, many more of these. so let's all touch some wood and say a little prayer and light a candle and do whatever it is we do to beg and plead to the cosmos for some stability, health and happy/normal days for asher and the rest of us. fall is upon us, my friends, which means that, for my immunodeficient boy, there will likely be many trips to paeds, who will call cardio, who will say "to emerg with him!" who will now have to actually look for something wrong because it's not hot out anymore. and let me tell you, that's not nearly as fun as it sounds. i'm hoping that none of the new cardios will know how i take my coffee (black, hint hint) for a very long time.

and while i've got your attention, an update on yale: he's being admitted in toronto tomorrow for a sedate echo, CT scan, and who knows from there. likely a cath and a barrage of other tests. please, God, let him just need a med change. anything else is just too much. please keep yale and tanna in your prayers. i'll post when i have details. or you can check for yourself; the link is on the sidebar. thanks. :)

some favourite asher pics from the picnic. for the rest of the pics, check out the link in the previous post

this past saturday was the 2nd annual CHD family picnic. this was organized by the CHD support group i'm in on facebook. it was a great day, full of chicken burgers and hot dogs from Maple Lodge (and provided free of charge by CardiacKids, from SickKids). they also brought a NASCAR car (mark dilley's car, for those non-nascar folks who don't know, lol). all in all, it was a great day. the kids all had a blast playing together, and it was so nice to spend time with other parents who know from personal experience what this life is like.

here's some of the best pics of asher....

asher's bum.

jodi lin, ryley, asher, hunter. one of these kids has their own original healthy heart. the others are single ventricles and transplant. other than asher (duh!), can you guess which kid has which heart? betcha can't! and that's the best thing about this picture, if you ask me. :)

asher, trying to grab my camera.

asher grabbed my camera.

asher and dominic. 2 single ventricles, neither of whom seems to understand this.

it really was a wonderful day. asher made a new girlfriend, dominic's older sister jodi lin. yup, it's love, folks, but i don't think i'll be publishing those somewhat scandalous pics here, thank-you very much. they're in the FB album, though. lol anyhoo....

great day. thank-you so much, jenaia, for organizing the day. it really was wonderful to finally put some faces to the names and stories we read about on the wall and discussion boards. can't wait till next year! :)

i'll be posting pics here from the Heart Picnic yesterday, but until i do, here's the link to the FB album i created. check it out (even if you're not on FB, you can still have a boo).

http://www.facebook.com/album.php?aid=49655&l=07ff4&id=593667512

it was a great day, so much fun. it really was a wonderful time with other families who know what it's like, this life...

it was wonderful to meet so many other heart families, and i can't wait till next year! ttys! :)