Tuesday, September 30, 2008
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. :)
Monday, September 29, 2008
- med change. this is the easiest, for everyone, especially for Yale and his mom, Tanna.
- transplant (if the other 2 "solutions" don't work).
you can imagine this is a very stressful time for them. please pray for them and the doctors. the link to yale's blog is on the side bar (i think it's the first one listed under "Heart Journeys"). check out his blog for all the details. thanks.
Tuesday, September 16, 2008
sorry about the lighting, or lack thereof. and once again, you'll have to tilt your head. (i am not responsible for any neck injuries caused by viewing this video.) but you get the idea. he's bipedal now, folks! :)
Monday, September 15, 2008
i'm heading in to london with a friend tomorrow morning. we're going to do some camera shopping. so don't worry. the picture situation will soon be rectified. and to all my scrappy friends, you can wipe those tears now, the end of the photo-drought is nigh. lol
Sunday, September 14, 2008
what i wanted to do was post a video of this, thereby alerting the world. but alas, that is not to be at this point in time. so, i'll just tell you, and promise a video as soon as it becomes available.
that's right, folks, my little baby is walking. it's so cute, he walks like frankenstein, not bending his knees most of the time. why is it that they understand that the knees bend for crawling, but not for walking? hmm... anyhoo... yeah, "he's bipedal," as Grammy Joyce puts it.
like i said, i'll post a video as soon as i can, but if you've seen my house lately, you'll know not to hold your breath waiting. lol talk to you later! :)
Sunday, September 7, 2008
this is the last song for a while now, i think. i just want you all to see asher's sense of humour. (in this one, his favourite parts are "through" and "far.") enjoy! :)
Friday, September 5, 2008
Wednesday, September 3, 2008
asher was pale. and sweaty. and refluxing and vomiting. and blue. and short of breath. with low sats, high heart rate.
so dr bertoldi called liz.
who said, "to emerg with him!"
so we went to emerg.
ok, there's the shock o' the day. i didn't like how asher looked, so i took him to paeds and she said, "yeah, he's looked better; i'm calling liz." are you surprised? really? why?
well, we get to emerg, tell them asher's symptoms (and btw, his colour when we got there? pale/pink. no blue. of course). well, apparently, despite the fact that i brought asher in to emerg a month ago with these exact symptoms and they investigated "query failure," and then a week later i took him back in and cardio said "yup, definitely CHF," obviously the problem would be...
yup, you guessed it, his GJ-tube in the wrong spot. of course! that explains everything! sheesh! well, as it turns out, his tube is in the right spot, so that's not the problem. (and for the docs reading this, i am aware that these problems could, in fact, be caused by the tube in the wrong spot. i'm just saying...) ok, so we eliminated that issue. so, if it's not gastro, obviously it's....
a UTI. so, bag him and check his pee. and yup, you guessed it... it's clean. nothing wrong in there.
now, i don't want to be that mom who shows up and says "it's his heart it's his heart it's his heart i won't leave without seeing cardio it's his heart." nope, i don't want to be that mom... again (don't laugh, paranoia is a side-effect of heart parenting, don't you know!) anyhoo... the problem is that we had docs tonight (resident and attending) who don't know asher. now, if it had been a couple other docs, then maybe i could have said, "look, i'm not saying, i'm just saying..." and they wouldn't have rolled their eyes at me. they may even have humoured me and called cardio. but tonight, we had people who don't know us. and apparently, don't know much about HLHS, either.
the nurse we had was quite concerned that asher's sats were 85%. the resident asked me if HLHS is caused by something happening during pregnancy (i wanted to say, "yeah, i conceived. that's what caused it." instead i just said, "no, HLHS just happens" and tried not to hit him. ok, i understand, HLHS is rare so the residents don't know much about it, but still, what freaking difference does it make to his treatment if it's my fault or God's?! i mean, seriously, people? if i said that i had sneezed too hard around the 7-month mark and that caused his left ventricle to fall off, would they have ordered an echo tonight? sheesh!). and um, let's see, ah, yes, the doc said, "yeah, i really don't have any idea why he'd have these symptoms." definitely docs who don't know ash.
ok, this post is sounding a lot more bitter than i feel. sorry about that. i'm really not bitter. maybe frustrated that my boy and i just spent 4.5 hours in emerg so that they could say, "yeah, i don't get it. maybe he's just hot." yeah, i'm tired and i have a headache. and disgusted by how dirty the floors in emerg are. yuck! asher's feet are black! disgusting! not surprising, but gross nonetheless.
anyway, i'm off to medicate my boy and go to sleep. talk to you later! :)