Payne Party of 5 is heading to Florida for Christmas. We've been planning the trip for a couple of months, but as we've been conditioned.... we never let ourselves get too excited for big events. All too often things don't work out because of Madelyn's health. So yes we're just telling most people now, 5 days before we go. But I promise, it wasn't a rash middle of the night decision, and no I don't think I've lost my mind, yet. Yes, we did get trip insurance in case we had to cancel last minute, we're not that naive. :)
Rewind to September. Greg is in his new career as a full-time firefighter, working that weird 24 hour on/off schedule. We notice that he is scheduled to have the 4 days across the holidays off. Then, Greg gets 1 additional vacation day to use. Hmmm we now have 6 days off. Then we start getting cocky thinking "hey, Maddie hasn't been hospitalized since before Arlo was born... she's doing great... maybe we could do a trip?"
Thank goodness for my wise special needs mom friend, and also for Madelyn's care coordinator, who both said "Sarah, book the trip". So I reached out to various facebook groups for special needs parents, looking for recommendations and tips! Flying with Maddie will be an undertaking, but we are hopeful and confident that we can handle it. (Look forward to me posting a picture of Greg and I managing 3 kids and 3 truckloads of luggage). We rented a ground level condo in a resort with pools, playgrounds, and splash pads, and plan to go to the beach. We even got hooked up with a company that rents wheelchair accessible vans. All thanks to the experiences and recommendations from other families like ours. And of course, I have a 5 page Google Doc going between Greg and I of every detail, every form needed for Maddie's oxygen and meds onboard, and every item we've ever owned that needs to be packed.
Well life has a funny way of working out. We booked this trip early fall. Then about a month and a half ago, we noticed Maddie was starting to show us some signs of pain when we moved her legs in a certain way. We took her to the orthopedic surgeon locally. He said that her right hip was dislocated (common problem unfortunately for non-ambulatory and spastic kids). That was the source of pain. Last week we went to Gillette Specialty Children's Hospital in St. Paul to meet with the orthopedic surgeon who specializes in hips there. She and her surgical partner believe that Maddie's best course of treatment will be hip reconstructive surgery. Now that totally sucks. We are 110% dreading it. And I actually told them not to call me until January to discuss this, as I needed a break from hearing about it.
Maddie's last orthopedic surgery was awful (spine rods). It started the domino effect of lung collapse, infection, diaphragm paralysis and surgery, cold, lung collapse, ambulance rides, etc and that pretty much lasted from September- March of last year. Knowing that that "could" be in our future again is gut-wrenching. But, do we want Maddie in pain? No. So we will schedule surgery for end of spring.
But for now, we'll be glad we booked the trip :)
