Good afternoon everyone!
I am the father of 5 children, two of whom were born with the most severe form of congenital muscular dystrophy, Walker Warburg Syndrome. One of my daughters, Ava Rose, passed away at the age of 2.5 a litte more than 2 years ago. My wish child, Keira, is 3 and doing well considering what she has. Keira is trached and on a ventilator (for CPAP support only) 24 hours a day. Recently MAW granted her wish to go to Disney. So we'll be on our way on April 22nd! I am really getting nervous about everything.
MAW assures us that everything will be fine. I guess I'm not so much worried about Keira's health during the travel (she's been stable since June of 2010), as I am logistically, dealing with all her equipment. We're planning to travel with the bare minimum on the plane, as MAW told us they will be ordering/delivering all her necessary equipment to GKTW.
I love reading all the tips for while we are there, but do any of you have tips for the travel part? What should we do to minimize issues at the airport and on the plane? Also, does anyone have a Kid Kart? Its a bulky wheel chair that we have tons of problems collapsing to easily fit in the car. I can just imagine how many problems the airlines will have...I just hope they don't break it because it's expensive!
26 more days and we'll be on our way. Anyone else going down during that time?