Neely had been in the hospital since September 20th, 2012. Five month old Neely has spent less than a month of her life at home. But she returned home tonight (11/20/2012). And unless something goes terribly wrong (and yes, that scenario is closer to possible than impossible), she will be home for Thanksgiving. If Kat and Josh are reading this, I want that to sink in with yall for a bit... Neely will be home for Thanksgiving. And in spite of the all this madness, trust that we all feel very thankful every day.
On July 5, 2012, it was determined that no part of Neely's intestines functioned properly. Since July 5, 2012, the only option this family considered was an intestinal transplant, and the optimal place to conduct this fairly new, risky procedure was at the Children's Hospital of Pittsburgh. Since we found that out, Pittsburgh became the most important city in our lives. Pittsburgh has almost become this mythical, magical place... a wonderland where Neely could get treated and begin a normal and hopefully somewhat-boring life. Pittsburgh became Oz, and the Wizards there would give her new intestines. Everything Kat and Josh and JD have done has been done with Pittsburgh in mind. It's been the goal to get her healthy enough for Pittsburgh. Pittsburgh is the light at the end a very long, dark tunnel (and, frankly, who has ever said that about Pittsburgh?)... or rather, Pittsburgh begins a the journey through a more brightly-lit tunnel. And yet, Pittsburgh has felt so unreachable. There have been various bumps, peaks, and valleys on the road to Pittsburgh. On more than one occasion, Neely's evaluation has been rescheduled because of Neely's ongoing health problems and hospitalizations.
Neely is scheduled for evaluation at the Children's Hospital of Pittsburgh on 11/26/2012. It's just an evaluation and not the transplant itself. But it's an important first step on the road forward. Everything starts with that evaluation. We just have to get her there. Originally, we were supposed to go via Angel Flight. That had been the plan for the past couple weeks. Last night we were told that, unfortunately, Angel Flight can not accommodate the 1,400 mile trip. Insurance wouldn't cover any other type of medical transport since it isn't technically an emergency. Partially a shot in the dark and partially in jest, Kat asked if anyone had a private jet and could fly them there. We were shocked and amazed and humbled by the amount of support that came pouring in (and continues to pour in) by this comment. If you think about it, it's a ridiculous request... and some people really tried to make happen. And though we settled on a risky, commercial flight (with one stop), we are more than emboldened by your kindness.
Since the day she was born, Neely's had eight surgeries, and she is still smiling. And lordy, it's a great smile. Over the five months, we've dealt with full days worth of bad news. And with the help of our friends, our family, and each other, we are still right here... committed to making this work. Committed to doing anything in our power to give her the life she deserves. We are 1400 miles away from our goal, and we will not stop until we get her there. (Hell, the Proclaimers? Vannessa Carlton? They gave up after a thousand miles.) Whether it be this Monday, next Monday or in a couple Mondays from now... Plane, helicopter, car or bicycle. We will hitchhike. We will crawl. We will borrow, barter and beg. But we will get to Pittsburgh.
|An old card from Onkel Jack to Kat|
|a gift from the chaplain at Dell|
|the overnight nurses worked on beautiful decorations for Neely's room (thanks Lauren, Michelle, and anyone else who helped!)|
|poster signed by almost all the wonderful folks on the 3rd floor :)|
|goodie basket put together for the Lucquetes (even Uncle JD) by sMiles 4 Sammy|