Home!

We made it home safely! Ahh, there is no place like it!

This trip really was an emotional event for us all. It took all our courage to head up there with hope that it would pan out into a positive result. We knew the testing would be hard on Lucy and that we could very well end up with nothing out of it. It was a risk that we waited to take until we had no options left. Our doctors here at home had given up on trying anything new and were slowly letting Lucy's quality of life worsen. When we checked in a the hospital Lucy had lost a pound since her last weigh in- now at roughly 27.5 lbs at 4 and 1/2 years old.

I cannot even explain how amazing this hospital was. It was beautiful, clean, and as modern as it gets. The lobby was practically art. They truly thought of everything when it came to service and comfort at this hospital. EVERY staff member- from the janitor to the doctors- was warm, welcoming, and comforting. Even the food was incredible. I wish we could visit a hosptial like that every time we needed to be seen. The meaning of healthCARE is truly meant there.

The rollercoaster really began after Lucy came out of surgery when her NG tube was placed and we were checked into our motility testing room. Lucy lay in bed crying that she wanted to "be free" from her tubes and wires. Dr. D came in the room and explained that after a quick review of all her information that he was not hopeful he had anything to offer us, that he felt unsure we would find a motility issue here. It was devastating to hear that so early on after we had traveled so far. It was all we could do to not cry and run home.

But as the testing continued our nurses encouraged us and lifted us up. They cheered with joy beside us watching Lucy eat. They cared and tried to hint as best they could that they could see something not right on the monitor because they knew we were worried. After we were finished our testing and were admitted to our room, the next day one of the nurses came upstairs just to see us again before we left.

By the time we got to meet with Dr. D for Lucy's results we were so nervous. We had spent the night praying and hoping that there would be something for us to walk away with from all of this. We tried to tell ourselves we would be okay if we got nothing more than information that eliminated yet another possible diagnosis.

But when Dr. D walked in the room, he flopped down in the chair in front of us and jokingly said, "Your doctor is much smarter than I am, he has proved me wrong. Lucy does have a motility disorder." To hear something like that so openly from a man who is truly as brilliant as Dr. D was laughable. After that he ran through a matter of fact plan, with all the optimism in the world. We were practically speechless.

I know better than to count my chickens before they have hatched. I haven't clicked my heels and jumped for joy that our problems are solved. I know this is a long process that probably won't be nearly as uncomplicated as it sounds, but I AM relieved. I am pleased we are finally moving forward to improve life once again after being hopeless for so long.

A trip all that way was absolutely worth it just for that.