Ronald McDonald House

I know we've all heard of this place, maybe you've even donated at McDonald's, but I wanted to make sure you all know just what a service they provide. We have stayed in two locations - one when we took Beans to Cincinnati and this location in Orlando (where we've stayed several times). The expense of having a chronically ill child is extreme. Yes, there's insurance, but it doesn't come close to covering all the expenses. We spend a fortune in gas to and from appointments, over the counter medications (Beans goes through a bottle of Benadryl about every 2 weeks! A bottle of Motrin lasts about the same, and those are only a couple of the things we have to buy.) Then there's the medical tape, bottles for bolus feeding, and other assorted expenses that aren't covered. Don't forget to add in the missed time from school and work, the hours of missed sleep, and the endless time spent on the phone with doctor's offices, pharmacies and home health companies.

When you have to travel for care, Ronald McDonald House is a HUGE help. I had to reschedule Beans' appointment once already because we just couldn't afford the 5 hour each way trip. It wasn't fair to him, but what are you going to do? This time we're cutting it extremely close, but because of RMH we were able to make it. This is so embarrassing to share, but I want you to understand how much this place means. We literally had money for gas on the way down and on the way back. That is all. We are able to stay here for $15 a night - which thankfully my car didn't take quite as much gas as I thought it would so we should be okay - and McDonald's provided a delicious taco dinner (yes, I know - Tacos from McDonald's? LOL) so we were able to eat. It's a terrible, depressing feeling to not be able to provide everything your child needs. Thanks so much to McDonalds and the Ronald McDonald charities for making it possible for us to make this very important appointment.

P.S. Tomorrow is a critical day for Beans - we are hoping to get approval to start food trials and find one - any - safe food for him to eat. There are also a few other questions weighing heavily on my mind, so any spare thoughts would be appreciated.