Chad and I decided several weeks ago to schedule an appointment for Lucy to see a pediatric neurologist in New York City that specializes in Rett Syndrome. To begin with, the appointment is on March 30th! This woman insists on getting newly diagnosed patients in as soon as she can to help create a plan for her and to give her family as much information, support, guidance, etc. as she can. So immediately it is pretty clear that she is passionate about helping families diagnosed with Rett Syndrome. I have been working with an intake girl from the Rett clinic where the doctor is located and after two phone calls to medical assistance it was confirmed that they will not cover any of The visit because Dr. Djukic does not have a provider number. But we said we were still going, even though the fee...out of our pocket now, would be $1215.00. People that love and care for us, over the course of two weeks, donated $850.00 to help pay for the appointment. We have never asked for any help and are so lucky to have these good people in our lives that are just willing to help!
Then, this week the intake girl called to confirm our appointment and to confirm that we would be paying privately. Her and I got to chatting since she also has a daughter with Rett Syndrome and then after some advice on driving in the city traffic, we hung up. About 20 minutes later she called back to tell me that the doctor decided to reduce our fee by 30% making it..$850.00! The exact amount of money we have already! And then that night Chad's dad called and offered to drive us to the appointment because he used to drive garbage to New York City and isn't afraid of driving like Chad and I are! He is going to take two days off of work to chauffeur us! Chad was instantly relieved to not have to drive us himself and we were so touched by Barry's thoughtfulness.
Plus, we have decided now to start working on building a modular house on land generously given to us by my parents that is behind their house and they have been right on the ball at getting people in line to do the things that need to be done to get the land ready. Dad found free shale, a friend of his is bringing a bulldozer to make a road, and another friend is planning on doing the basement for us! They have to call people, have it surveyed, etc. and like the day after we told them our plans they were on it.
I believe, and have always believed that people are inherently good. Chad and I are fortunate enough to be surrounded by friends and family that are outwardly good and we have always known that, but then they still will even surprise us at how kind, generous, and thoughtful they can be. So this stupid, heartbreaking thing has happened to us, but then people just do nice things to help us and support us, and assist us in providing Lucy with the best care that we possibly can. I don't even know what to say to explain how grateful we are to everyone. So even in this unfortunate situation, we have still found fortune at every turn from so many different places.
Oh Julie! This post definitely had me in tears -all the way from start to finish! But they are the kind of tears indicating relief as each step through this post, things came together so good for you and thus, ultimately for Lu! Medical assistance is a good thing, for sure, but sometimes the logic they utilize sure seems to be a royal pain in the behind, doesn't it? How great though that Chad's dad will drive you kids to and around NYC! That's one big headache removed from your lives. And that your parents have gone into overdrive to help you get started on a house -well, that comes as no surprise to me! Prayers -whether our own or those being offered by others (which we have no idea exactly what is being prayed for then) -do get answered. That this doctor will work closely with you, provide as much information as possible to you on the best ways to help Lu -now that has to be one big prayer answered too!
ReplyDeletePeace and love plus continued prayers that things will at least smooth out as you acquire more information.
What a relief that you won't have to drive in NYC yourself! And you will have an extra set of hands to help with Lucy during what will most likely be a stressful couple of days. It doesn't surprise me that so many people are reaching out to help you...you have spent your life (well, what I know of it from personally knowing you the past almost 12 years and from what I have heard from your past) doing good for other people. When you are in need of help, it all comes back to you. Karma?! Love you!!!
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