Wednesday, June 16, 2010

Happy Days.

(Charlie, 11 1/2 months old at Aunty Anna's)

So, if anyone read my last two posts back to back, I can imagine you may have been thinking, "This girls up and down more than an elementary school teeter totter." And I am. My moods change from one minute to the next. And I'm OK with that...maybe Matt's not...but I am.;) Hospitals and time (too much of it on my hands) seem to affect my moods the worst, if I keep busy and avoid hospitals I'm pretty high functioning, but throw in one or the other, (or both!) and I lose my mind. I mean really, on a good day, like today, I think, "Who cares if I feed Char through a g-tube and have to position her a certain way and suction saliva out of her mouth?" I mean, the more Matt and I do it, the more it feels like no big's our equivalent to cutting the crusts off of a peanut butter sandwich and chasing after a hyper active child. You people do those things, and we do these. Same, same. I know, not really...but, that's me on a good day.

We were only in the hospital 2 nights. Charlie didn't like the bipap mask, but I have faith that she'll learn to. I think it had a lot to do with the nurses and doctors thinking they should sneak it on her after she fell asleep at night (which is never before 11pm) so, when they would slip it on, air blowing in her face, Charlie would lose it and fuss and cry so loudly that she'd wake the other kids up in the ICU, making me feel horrible. It wasn't the nurses faults, they were just doing what the ICU doctor told them to. After hearing a little boy next door who had a tracheotomy, wake up scared from Charlie's howling saying, "Mommy, what's all the ruckus?" on the first night, I suggested we only try it once the next night, which we did and she lasted two hours with it on her face, which I was happy with. I think one of Charlie's biggest concerns was the fact that she couldn't manipulate her thumb enough to effectively pop it in her mouth...and she absolutely LOVES her thumb!

After much trepidation, Matt and I decided to try and hook Charlie up to her electric, rate and dose regulated feeding machine last night. And oh my god, all this time there was actually a blessing in disguise tossed in the corner of Charlie's room. We were initially apprehensive about using it because we just felt like it was one more nail in Charlie's coffin, one more reminder she was sick, one more piece of medical equipment, but man it does a good job at helping us help Charlie. We can sleep nine hours straight with that thing! Kids with SMA need to eat every 3 or 4 hours, so we were always waking up, even if she was still sleeping, to g-tube feed her....and after the feed she needs to be elevated for at least 15 minutes, so needless to say, it really messed with our sleep (and hers). Now, we can hook this feed pump into her g-tube and it will slowly deliver her two feeds over several hours. We did this last night and it worked! A full sleep was had by all! We're going to try to be a little more receptive to any new medical equipment that's suggested to us, who knows, it just might help!

I have been overwhelmed with the response from people regarding sponsoring me for the Adventure Challenge. So far I've raised (with your help!!) 3100$!! I am in second place for bringing in the most donations for Canuck Place, and I plan on coming in first (for donations, not the race, ha ha!) No, I'm really going to try my best and hope to finish it at least in the top three. It's funny, I feel like a bad episode of Oprah..."Woman has a sick daughter, decides to run a marathon... exceeds all of her own expectations, and sees what can happen when she reaches out to her community, and everybody lives happily ever after." But whatever, I'm just glad I'm channeling this pain in a mostly healthy manner. Thanks for sponsoring me friends! Those of you who haven't yet, if you can, please do!


  1. way to go! if i had some extra money i would dontate in a heartbeat.

  2. So glad to hear things are falling into place for you guys!