5/13/2015 - One Year Ago Today

Hard to believe but 1 year ago today Leo came home from the hospital. Here is a link to that post.

http://lifewithldt.blogspot.com/2014/05/513-we-are-home.html

What is really ironic about this posts and the other posts last May, we talk about lack of sleep. Well, the last two nights we haven't had a night nurse so lack of sleep still seems to be a theme in our lives. Our night nurse has had sick kids and then got sick herself so Kate and I have split the last two nights staying up and taking care of Leo. We hope she and her family feel better, and we really hope it is not code for her interviewing for a new job. Our day nurse is so awesome, she is coming today at 5am to help. She usually doesn't start until 8am. Even though sleep now and sleep a year ago is about the same for us, it doesn't compare to when Leo was in the hospital - there was very little sleep then. During the time that Leo was in the hospital, Kate and I alternated nights at the hospital which I couldn't imagine doing again. Sometimes Kate and I would go weeks without seeing each other and there were only a handful of times that we were together with Sammie during that stretch so it had to be hard on her too.

Ever since Leo has been home, he has kept us on our toes to say the least, but we are honestly doing well. I've read a lot of articles and blogs that say raising a child with special needs can tear a family apart. Honestly reflecting back on the past 18 months I think our family has grown closer. Kate and I have a deep trust and reliance on each other. I think we now have a better sense of what really matters in life, how to be thankful and how to forgive. Leo was given to us for a reason and we love him so much. I'm also proud of us for holding down two jobs and helping Sammie experience the world. Despite overall being happy and healthy there are always a few things going wrong but we have learned how to make the best of it.

As far as budget woes and nursing, things are still up in the air. All of our nurses are talking about exploring employment options, possible second jobs, and other work options which is making us very nervous about what the future will hold. I guess our night nurse not showing up the last two nights saved a few dollars :). Kate and I are doing everything we can to keep them happy hoping that the salary cuts they all just took will be reinstated. The cut for them is significant, it ranges from $3-$4 an hour. We really appreciate everyone's support with contacting our state representatives. We hope all the letters and phone calls will change things.

In Kate's letter, she quoted some cost savings so it prompted me to look back at our previous hospital bills to see how the more known costs compare to what we experienced. Our hospital costs were close to $20K per day because when Leo is hospitalized, the trach requires him to be placed on the intensive care floor. Our numbers may be a little inflated because of other treatments Leo was receiving but still, the costs between home care and hospitalization are significantly different.

We've been busy lately with the budget drama but over the past two weeks we celebrated Kate's birthday and mother's day. Kate is amazing, there is no one else I know that could do everything that she does. Below is a pick from Kate's birthday where we gave Leo some icing, he loved it and kept giving us lots of smiles.