Friday, May 21, 2010

yes, it's been a while, and yes, there's QUITE an update... don't worry, some of it's GREAT!!!

oh, my sweet little man...

i don't remember if i've mentioned this before, but a few weeks ago, probably in the midst of some boredom, i decided to read over asher's blog here, starting at the beginning. and i got to the posts from after the coles in May 2008. now, we all know my habit of telling you all about clinic visits, including vitals, height and weight. i've always done this because i know there are some readers who would ask me anyway, so i just post it here and then no one has to ask me. (teehee) i had no idea it would be such a handy record...

it turns out that asher gained less than 1 kg between the coles 2 years ago, and the fontan in early march. he was 12.2 kg in june 2008, and weighed 12.8kg at the fontan pre-op. that's about a 1 lb difference for my non-metric readers. 1 lb. in 2 years. yeah.

i discussed this with his paeds a few weeks ago, and she was also somewhat concerned. she offered to set us up with a dietitan, but really, there's nothing she can tell me that i don't already know, so we decided on just periodic weight checks with the doc. that works. why waste resources, right?

so, on wednesday, i took asher in for his weight check. he has actually gained: he's now up to 13.6 kg. this was great! a huge gain in two weeks! wonderful! but he still has a loooooooooong way to go to catch up. after the coles, asher was around the 80th percentile for weight. he's now around the 20th. that's quite a drop. but doc's awesome, and gave us some great tips and ideas for fatty foods to get this kid back to a better size. this includes milkshakes with pediasure plus at bedtime, lots of cheese, homo milk instead of 2%, polycose added to just about everything. we're on it, and we'll get him fat again. so no worries... well, i am worried that this will also end up fattening me up... but polycose can be added to only asher's dishes, so hopefully the other kids and i won't put any extra weight on in the process.

let's see, what else happened wednesday....? hmmm..... oh, yes.

I REGISTERED ASHER FOR SCHOOL IN THE FALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

junior kindergarten. already. all day, every day. can you believe it??? i can't!! he is soooo excited! he keeps saying, "i a big boy. i go school! i ride the bus wiff brammy and blivey!!" that's right, folks, my littlest man will be boarding the school bus in september with his brother and sister and heading off to school! oh, sweet normalcy!!! hard to believe he's at this point already. it seems like just yesterday he was a tiny babe, and now he's a big boy!!!! hooray!!!!!


and why, oh why are there always "buts" in asherland??

dr b (paeds) and i were discussing this on wednesday, that i would be registering him for school. she said that she would call the school that afternoon and talk to them about asher, because they're going to need a heads-up.

  • asher might be somewhat delayed socially, having spent so very much time in hospitals, isolated from other kids.
  • asher will require a modified phys ed programme. he might not be able to participate for the full time, due to fatigue. but he will also require someone to monitor him, because he won't stop when he needs to, so someone else will have to pull him out.
  • they need to know about his colour wheel: all those glorious shades of pale, blue and grey that he is wont to turn without warning, and often for no apparent reason.
  • asher will have activity restrictions, because he cannot participate in anything that involves electricity, magnets, or activities that could result in a bump to his stomach.
  • they need to know about what symptoms to watch for.
  • they will need to know what to do when he shows symptoms, or gets bumped on the head (or shows up with lots of bruises), or shows signs of pacemaker malfunction.
  • he may not be fully potty-trained when he starts school due to meds. we're working on it, but he's spent his whole life on diuretics and will be on them for the rest of his life, so it's a challenge. he has made some progress, but it's hard. (i'm just glad his no longer on diuretics and laxatives! that would be impossible!!!)
  • they need to be aware that asher may have some emotional difficulty with school. because sometimes these kids can develop some symptoms of post-traumatic stress disorder (PTSD)...
which leads to the next part of this update.

and this is the heartbreaking part.

a couple weeks ago, you may recall, i posted that asher had started crying at naptime and told me he was scared of doctors. this happened at home. when he was fine. and there were no doctors around.

i mentioned it to dr b on wednesday, and she said, "yeah, i remember that." so we talked about it for a couple minutes, and she told me to call KW.

a therapist.

so this morning, asher goes for his first play therapy session.

my heart hurts to think about this. and i can't help but think it's partly my own fault that he's in this situation... well, sort of. maybe i'm just afraid he blames me for everything. lately, he's been daddy's boy. he's even told me a few times that he doesn't love me. just daddy. (mind you, two minutes later he'll look at me and say, "mommy, guess what." "what?" i say. "i love you." awwwwwwww!!) but still. i am the one who takes him to clinic appointments. i am the one who takes him to emerg. i am the one who pins him down for bloodwork and IV starts. i am the one sitting at his bedside in the unit, on the ward, in emerg. i am the one who rips him away from his brother and sister and toys and kitty and everything he loves to take him to the hospital or a clinic. i do all this because i love him and want him to be as healthy as possible, and i want him to stay with us as long as possible, so i do what i have to do... but all this has hurt him so badly. he's been through so much, and i was right there for all of it. sometimes i feel like i've failed him somehow; i've protected his body, but what about his spirit? i'm supposed to be the one who protects him and stops people from hurting him. instead, i pin him down while they poke and prod, and i hand him off to total strangers who carry him off to the OR...

i'll post later and let you know how his session goes this morning. but i guess this is a huge prayer request for him. we've done everything we can for his heart... but in the process, we hurt his heart. sigh. please pray for healing for him. it's such a hard journey he has had in his life so far, and it likely isn't going to stop anytime soon, so please pray for him. thanks.


Hope's Blog said...

I am sending prayers for you and Asher. I know it has been a long, rough ride and you did everything for your little man. It is our 'normal' to feel the pain we have had to inflict because of CHDs and it really does SUCK. You are a wonderful mom and thankfully you are able to get him into play therapy now.

ChristophersHeart said...

You know, I've been thinking about this. Why isn't it automatic that heart kiddos are given play therapy during and after their surgeries? In general they spend so much time in hospital, at appointments, in the ER, having surgery compared to heart healthy kids, it makes sense that there would be some PTSD going on in lots of them. The hospital could easily set up regular play therapy (not just child life but focused play therapy) for these kids and likely prevent some of the trauma and give them coping methods early on. I'm thinking we should start advocating for this on behalf of Asher and all the heart kids out there.