We are on our way to Lucille Packard Children's Hospital (aka Stanford) to check in with Gwendolyn's pulmonary doc, Dr. Yuan. We are relieved to be going up to see her and are hopeful Gwendolyn's struggles can be eased by increasing the BiPap settings. We wholeheartedly trust Dr. Yuan and her experience with SMA children and know she will be thorough and honest with us. But, we are not without worry.
This drive is always reminiscent of our first trip two weeks after Gwendolyn's SMA diagnosis when she was just 6 months old. We naively went up with bathing suits and thoughts of attempting to turn a devastating diagnosis and a scheduled g-tube surgery into at least a few moments of positive memories at the hotel pool. It was anything but. The bathing suits stayed packed and we spent a month in the hospital. And so our life dependent on machinery began.
While we hope, hope, hope the signs we are seeing are “only” the BiPap settings, we know that means the disease is progressing and there is nothing we can do about that. And frankly, that is torture. We feel utterly helpless as our sweet baby grows weaker. We try not to focus on that. We work hard to encourage all that she can do and facilitate opportunities for independence. But, it doesn't mean we don't notice as her abilities change. And her breathing can only get so much help from BiPap. We know all of this and it weighs heavily on us when we notice even the most subtle change.
But, hopefully, on this trip we will learn that with a few dials and
tweaks to the machinery, our little girl will return to her spunky self.
And then perhaps soon…she can be driving this powerchair!!!