sigh...

a little bit about asher first, then moving on to bigger, more important things...

asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?

he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"

"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."

"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)

so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.

dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.

one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.

but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!

so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.

Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:

It has been a long night - B has not turned the corner yet. I have not seen her blood results yet today, but through the night the bleeding started. I will spare you the gory details, but this is "the" next step in the DIC - the only way to treat it is to eliminate the cause, and that is taking its time. Please continue to pray, cross your crossables, whatever you can do...

if you're interested in reading more, to better understand what is going on, please check out her blog. this is a terrifying admission. right now, Brigid needs all the prayers she can get, as do Allison and the rest of the family, not to mention the docs who are trying to figure out what's going on so they can treat her, and the nurses who are caring for her. please please please pray, send vibes, cross crossables... whatever it is you do, please do it. and please spread the word. this is a wonderful family, a dear friend of mine, a beautiful little girl who is asher's "best," and this is absolutely heartbreaking and terrifying. please pray, spread the word, add them to your prayer lists, your church's prayer chain. thank-you.

i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.

some sweetness.. and some sadness...

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

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

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

"he hook cars up to his tail."

"which cars? any cars?"

"no, juss de broken ones."

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

"he take dem to de garage."

"to get fixed?"

no answer.

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

nod.

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

no answer.

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

no answer.

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

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

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

"where is he taking lightning?"

"to de garage."

"what's going to happen there?"

no answer.

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

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

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

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

well, it's a day...

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

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

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

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

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

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

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