even though some days are tougher than others. Gorgeous Indian-summer weather (and a respite from her nearly endless nausea) allowed Jenny to enjoy a Sunday excursion to the Richmond Marina, with soft ocean breezes, picture-perfect views of the San Francisco skyline and an ever-changing panorama of sailboats entering and exiting the harbor. She adored basking in the sunshine while sharing a deli sandwich with her dad. But, Jenny was equally pleased when she returned home to discover her mom decorating her room with Halloween tinsel, replete with orange metallic jack-o’-lanterns that sparkle whenever the sun catches them. She’s already planning her Christmas decorating scheme – and looking forward to Christmas visits from family and friends.
All of this is possible because Jenny’s condition has stabilized. She is still able to eat (but needs extra nutrition via her g-tube to avoid losing any more weight) and to breathe on her own (although she uses a “sip-and-puff” respirator during the day and a different one at night). And, she is working hard with her physical therapists to preserve and improve the use of her left thumb and forefinger, exert some control over other muscles and retain her range of motion in all four limbs.
Through all of this hard work – on top of the schoolwork she resumed with an at-home tutor in September – Jenny remains amazingly cheerful and optimistic. To be sure, there are hours and even days when the constant challenges seem too much to be borne. But, with a little help from her friends, Jenny always bounces back. And, perhaps, with a little help from a new experimental treatment that she began about a month ago, Jenny will bounce back physically as well. At least, that’s what we’re all hoping and praying will be the case.