Well, we are feeling back to normal…almost. Each time we have some sort of misstep, it takes a while to recover. But with Gwendolyn doing so well, we are feeling the spring in our step once again. And thank goodness (hallelujah!) she is feeling so much better. Her secretions have thinned out (be gone Mr. Sticky!), her energy is increasing, and she even did well off bipap yesterday (which is a good thing because she was getting pretty stinky with no bath 
). We were supposed to spend this weekend with some of our best friends in Las Vegas, but we canceled the trip when G just didn't seem quite right. Although we wish we could have gone (we were pretty sad to cancel), it was the right decision and instead we had a stay-cation (yes, I just used that term). We all needed some R&R and took record naps on Saturday, watched Netflix that have been sitting there for months, and spent lots of time cuddling as a family (and G picked out a new book at the bookstore!). Our stay-cation (ugh…I just used it again) meant that by Sunday afternoon we all had more energy to plow ahead. We ventured out to our favorite beach hang-out for an early dinner, sat with our feet in the sand, and just took it all in. (On a side note, the second we get settled at Shoreline Cafe, Gwendolyn insists on having her earphones and ipod tunes as she watches the waves crash — too funny!)
And while we were lazing around on Sunday morning, the awesome SMA fighting trio were pounding away SMA. Lauren, Stephen, and Magda met up for the Bronx Half Marathon in memory of Owen Simmons and Owen Shuler (whose angel day is today). They also ran for Gwendolyn and all the thousands of children fighting SMA every day. This trio inspires and motivates us, not only because of all they have done for GSF, but because of their passion and their positivity and their sheer dedication to make a difference in the future of this disease. There is truly something so poetic about the way they use the strength of their bodies for those who lose strength daily. We feel so honored to know them and to call them friends. And the power of what they did this weekend permeated all the way over to us and gave us strength and courage. Thank you Lauren, Stephen, and Magda! We love you guys!!!
Thank you all for your emails and comments. We read them all and they encourage us so much. Sometimes SMA sucks…okay it always does…but sometimes it gets the best of me and it helps to know we aren't alone.