Thursday, September 17, 2009


One of the hardest things to do as a parent of an SMA Type 1 child is to adequately convey the heightened level of awareness and anxiety that we live with on a daily basis as we care for Nate. One of the blogs that I follow is, in which Bill & Victoria Strong chronicle their daughter's battle against SMA Type 1. They are an amazing family and have done a great deal to raise awareness and research funds for the fight against SMA. (The link to Gwendolyn's site is on our blog's homepage.)
In a recent post on their website, they eloquently address this issue and I'd like to share it with you:
Concerned About Gwendolyn
We're pretty concerned about Gwendolyn. She has had several very, very scary choking episodes over the last few weeks while off bi-pap, is really struggling coming off bi-pap at all at this point, has had a few episodes of turning gray and dusky even while on bi-pap, has been lethargic, fussy, and just plain isn't herself right now. In general, all of her stats -- heart rate, oxygen saturation, and temperature -- have been normal save for this morning when her oxygen saturation crashed into the 70%'s on our last set of Cough Assist during her morning breathing treatment. But she rebounded relatively quickly with oral suctioning and another quick cough set. And, to top it off, I got a serious yellowish mucus plug while suctioning her orally after our walk this morning -- I think she was working on bringing that up the whole morning which is probably what caused the issue during her morning treatment.
Every second of every day we operate on a ridiculously high level of anxiety, alertness, awareness, and readiness -- even when Gwendolyn is perfectly healthy. We have to, as she can literally plug and stop breathing, as she has several times over the last few weeks and countless times over the last two years, at any second with zero warning, no signs, and no way to tell us (we literally have to be watching her 24/7). And when we see even the slightest signs of change in anything, and I mean absolutely anything, it sends us into a new stress galaxy altogether.
For me, besides the obvious, this is one of the most exhausting parts of parenting a child with SMA Type I. I kind of feel like I'm in a constant state of DEFCON 1: I know the inevitability and the statistics of the disease, I've had to watch Gwendolyn valiantly fight for her life on too many occasions already, I know that we are on borrowed time, I know pretty much all of the scenarios of how this will likely unfold, but...and this is a HUGE BUT...I don't know when. It could be right this second, it could be tonight, it could be tomorrow, it could be next month, it could be next year, it could be five years from now. Regardless, we have to live our lives on a second to second basis knowing that we are going to lose our daughter to SMA and it could be at any one of those preciously short seconds. And that's pure torture for me. Plain and simple.
Well said, Bill & Victoria, well said....

Wednesday, September 16, 2009

I know...

it's been a long time since I posted. Everything is fine, just busy (what's new right?). Anyways, a "good" longer post/update will be coming soon. Hopefully, with new pics and videos. I'm trying to get a video of Nate yelling his happy sounds and also him using his eye gaze communication device, but of course, the minute I turn on the video I get nothing! He won't cooperate - UGH! But I'm trying and I'll have some new pics as well.