As I post pictures tonight, I think of how deceiving pictures can be. They are the split seconds. I tried to convey some of the reality of our day. In truth, it brought the challenges of formula pumps leaking all over the restaurant floor, a footrest falling from a wheelchair, some serious reflux, concerns about abdominal swelling around a surgery site, worries about a yucky cough, a wheelchair tray that seemed to fall off every 10 steps or so, diapers leaking etc. So, no, it’s not easy…and yes, we try to breathe deep and let our children’s smiles sink into our souls.
In truth, one of the agencies that we have worked hard over the past few months to see while here, has still not responded, and that’s hard. We want to be able to help others understand the catastrophic cost of KI and do what they can to put the better protocols in place and follow them. But even with that disappointment, it is with happy hearts that we join PAS tomorrow and thank the doctors that ARE invested in the battle to #stopKI!

Miriam