Friday, August 19, 2011

the long-awaited update...

yeah... sorry that it's taken so long to update here... i don't really have a reason, other than work and um... well... i kinda forgot. {hangs head in shame}

but here's what i know you're dying to know... the details and results of the CT scan. sit a spell, gentle reader, and let me tell the tale.

on the morning of the scan, blithe and bram stayed home with their new babysitter, a really lovely girl i work. she's an absolute sweetheart, and the kids adored her. seriously, for the rest of the day, all i heard was "we had so much fun! can she come over again???" i'm not joking. i have since promised the kids and her that i will be calling her again.

it's nice, you know, this whole "having a babysitter for the kids" thing... i've never really had a regular sitter for them, which, i'll admit, has probably led to a lot of isolation for me over the last year, especially. now, just knowing that there is someone i can call to watch my kids... a weight has been lifted, let me tell you.

once she arrived, asher and i left for the hospital. en route, he said from the backseat, clear out of the blue, "mommy, when i was blue, i was a smurf." he decided that, since he's any blue sometimes anymore, he will be called "half-a-smurf." i love his sense of humour. the fact that he has been through so much, and can laugh and joke about it... to me, that demonstrates so much strength and resilience, and a spunky, slightly mischievous sense of humour. totally (albeit relatively) normal sense of humour for a 4-year-old boy.

we arrived at the hospital, and the nurse in the clinic was surprised by how co-operative he was for the blood pressure and sat check. (she had never met asher. haha) and off we went to the CT department.

to wait.

for about three hours.

with a 4-year-old boy.

who hadn't eaten since the night before. (they were going to anaesthetize him for the test.)

but he was a trooper, and only asked a couple times for something to eat. meanwhile, he played and chatted and read a book and was very well-behaved.

when his name was finally called, we headed back, and he chatted with the nurse, and pushed open the heavy doors into the lab. as soon as he saw the CT, however...

he ran behind a door and cried and refused to come out. it took a lot of coaxing, but in the end, i picked him up and laid him, literally kicking and screaming, on the table. i tried to comfort him, but that was difficult, and frankly, they needed him to scream like that to help breathe in the gas and get him to sleep. to be honest, i wanted to cry, too, but i couldn't...

anyway, the test only took a few minutes... but it felt like an hour. i wanted to vomit as M and i sat in the waiting room. then the nurse came out and said, "asher would like his soother. he's quite adamant about that." by the time i was allowed back to see him, he was wide awake, his sats and heart rate were "asher perfect" and he couldn't find his flip flops. he also thought that the bandage in his elbow was just something they gave him for being good, and he didn't want it taken off. apparently, he has never clued in that a cotton ball with tape is the sign of an IV. haha

ok, cut ahead to tuesday morning. the kidley-winks came with us for the follow-up with the respirologist, and our social worker met us in the clinic, as well. she had offered to come for support. it was great to have her there.

ok, ok, i'll get to the test results! sheesh!!!

so, doc came in and we talked for a minute, and then she said something that i had hoped she would say:

the obvious markers of plastic bronchitis were not present. in fact, the top portion of his lungs looked great! there was some yuckiness at the bottom of his lungs, but that doesn't lead her to plastic bronchitis. her words, "it's probably not plastic bronchitis."

ok, yes, it's not a definitely "no." but!!! it's not a definite "yes," either. so i'll take it!! {happy dance}

however, all this being said, there is a sadder development in asherland. he has started having accidents. not just once in a while, either. we're talking, 3 or more a day, and overnight. he told me that he doesn't remember how to go potty anymore. now, i know that's not entirely true... he does go running to the washroom sometimes... but not always. and he's too embarassed to tell anyone he's had an accident, so on top of being wet, he also ends up with terrible "diaper rash," for lack of a better term. so today, we ended up doing something i haven't done since early march.

we bought pull-ups. :(

he asked to wear them, and he even picked out which ones he wanted. there are moments when he really wants to wear them again, and moments when he doesn't... so we've reached a temporary arrangement, where he'll wear the pull-ups overnight, and during the day, he'll have to either run to the washroom or tell someone if he has an accident.

i hope i'm making the right decision here. i'm not entirely sure. i'm trying to do the right thing, but it's such a tough call... he's having accidents because he's upset from all the appointments and tests over the last couple months (yes, the accidents have been going on since june. :( ), but what if taking this step upsets him further?? i don't know... hopefully this is just a temporary set-back. i talked to him about it tonight. i reminded him that he's a big boy and he's been through a lot. i told him that having accidents isn't a sign that he's a baby or anything. it's just a sign that he's made it through some scary things, but he'll get through it and it'll be ok. he picked out the pull-up he wanted to wear tonight, and was so proud of himself when he put it on without me, so i'm hoping that's a good thing... and taking this one day at a time. tonight, this was the right decision. it might not be right for us tomorrow, but it is for tonight. we'll get through this.

the other kids are being so great with asher about all this, too. blithe helped him to reach the package of pull-ups off the shelf, and bram has been relating to asher all day with his sweet little, "i always had accidents when i was your age, too, asher."

meanwhile, please hold us in the Light. we're all elated about the CT results, so give thanks with us about that. but if you would continue to pray for emotional healing for asher, and patience, understanding and wisdom for me, that would be very much appreciated. thanks so much.

and one final thing: if you want to follow asher more closely, including "as it happens" quotes and antics and cuteness, but also "in the moment" prayer requests and thankfulness opportunities, please join his group on facebook, Blue Like Me.

Monday, August 8, 2011

wow, where do i even start?!

it's been quite a month around here...


we met with our CCAC case manager who was, in a word, the best CCAC case manager i've ever met! so nice, so helpful. she actually listened to me, and she offered supports and services that no other case manager i've ever met has offered. simply incredible! total gift!

she set us up with a social worker. actually the social worker was here this afternon. she is so nice. she's going to look into things like respite care for asher, a YMCA membership for the kids and me, some funding, and she offered to come with us next Tuesday for our respirology appointment. how wonderful is that?!

in fact, over the last month, it's just been one blessing after another. it seems like every day God shows up and dumps goodness onto us. sure, asher's still sick. his energy level is decreasing, and he's occasionally short of breath for no reason or with very little exertion. so yes, that sucks. but let me tell you about a couple other things that have come about that i would never believe if it weren't my life!!

  • i'm going on vacation. much needed, i might add. i'm going to florida for five days in february with some friends. and we're all leaving our kids at home. i'll admit, i was an emotional mess a week ago, but once i decided to do this, i haven't cried nearly as much, i've been able to cope with life's little challenges... just knowing that while all you suckers poor saps walking popsicles gentle readers who live north of the border or in other winter-prone locations are shovelling snow and shivering and complaining that you're out of marshmallows and how can you have hot chocolate without marshmallows this isn't cool for the love of everything holy and good this isn't cool!!!!!!!!!... i'll be in miami, sitting by the pool with a book and window shopping with the girls. i can't wait!!! i haven't been on vacation since before blithe came along, and before that it had been... wow... years. so yeah. i can't wait!!!!!!!!!!!!!!!!!!! {happy dance}
  • yesterday after church, i was chatting with a friend. i was telling her about our upcoming appointments and how nervous/scared i am... anyway, yesterday evening, her husband, one of the pastors at our church, saw that i had posted asking if anyone would care to join me on friday morning while asher's in having his CT. he, then, posted this on his profile:  There is a mom in our church community who needs someone to sit with her at the hospital while her son undergoes tests this Firday- if you are available please contact Heather Heywood I know that she would appreciate it very much. i kid you not, within five minutes, a friend offered to join me and she will be the coffee wench and we shall drink coffee and i shall not worry about asher being put under to undergo a test that could very well lead us to yet another horrible diagnosis. anyway, the whole point of this is... community. it's such a gift. and as i said on FB yesterday, the support that the kids and i have received has been overwhelming and humbling and beautiful and the picture of grace and Love. 
um, i can't really think of anything else going on in our world right now... blithe and i picked out her outfit for the first day of school, and let me tell you, this girl has some kinda style. also, we're trying to figure out where to go on a wish trip... so far, the choices are "wal-mart and mcdonalds," the island of sodor, take a train to toronto and take the subway to a hockey game, or disney world. so far, wal-mart and the hockey game are winning. HAHA

so that's the world according to asher... as told by me... for today, anyway. haha 

you are Loved.

Wednesday, August 3, 2011

after reading a particularly hilarious post on cake wrecks, asher has decided that he wants this song on his blog. enjoy!!

and seriously, go check out the cake wrecks post. after reading the first paragraph, before i'd even looked at a picture, i was laughing so hard my sides hurt and asher thought i was crying. it's just epic!!!!