Tuesday, September 14, 2010

Back to Blogging Day One: Back to the Beginning

In the interest of being a little more consistent about my blogging efforts here, I am participating in a week-long Back to Blogging program from the Sits Girls blog.  I am a day late in doing the first post, but I figure better late than never and I'm just going to do it and move on to the second day when I have the time (maybe today, maybe tomorrow, maybe later in the week).  The sponsors of the program are Standards of Excellence, Weststar Kitchen & Bath, and Florida Builder Appliances.  So, thanks to them for sponsoring the Sits Girls in giving me the swift kick in the ______ that I need!

The first blogging assignment for the week is to re-upload the first blog entry on this blog so here it is, from November of last year:

A Year of Thanksgiving...and Soul Searching

Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza.  So, to me, today is the day after Thanksgiving - or leftovers day!  I am choosing today to start this blog because I have a lot to be thankful this year - and I feel like I could spend a whole year saying thanks.  So, this starts my year of Thanksgiving...
My daughter is just over nine months old, and four and a half months ago, she received the greatest gift that she will receive in her life - a new heart.  She was suffering with Dilated Cardiomyopathy and she was in cardiogenic shock, ventilated and barely awake (to keep her from pulling out the ventilator and to let her heart rest).  We spent almost three months in a Ronald McDonald house before getting to come home a little over a month ago.  Needless to say, our lives have been turned upside down.  We have to give Bean medications three times a day.  We have to flush a broviac line (something like a semi-permanent IV) each day.  She has a lot of doctors appointments that are about three and a half hours away from our home.  We also have to take precautions not to expose her to germs - she is immune-suppressed and the Swine Flu has added a whole new layer to that worry.  My husband (pictured with Bean) has had to give up one of his two jobs, meaning we are extremely low on money. Although our lives are changed forever, we are incredibly thankful - for Bean's new heart, for the wonderful care she received from the Doctors and Nurses at Lucille Packard Children's Hospital, for the availability of a room at the Ronald McDonald House Stanford for only $10/night during our stay, for the incredible generosity and love of friends and family during our time at the hospital...the list goes on and on.
But, even as we are thankful, we also have to realize that there will be serious challenges.  We will need to figure out additional forms of income.  We will have to get our lives more organized in order to get done what we need to get done while still dealing with additional medical responsibilities for Bean.  We will need to deal with insurance debacles that are threatening to put accounts into collections.  We will need to become aware of medical issues that come with Bean's medications and treatments.  And because of the experience we have had during this, we will need to find a way to give back - to make sure that others going through this or similar things will have resources they need available to them.  Whether that be through charity fund-raising, sharing information on this blog, or doing speaking for the causes close to our hearts, I haven't figured out yet.  But, I do know that I HAVE to find a way to give back.
So, welcome to A Second Heart.  I hope you will find something that is helpful to you!

Well, there it is.  It really doesn't seem like that was almost a year ago...but, in other ways, it seems like it was forever ago!  We are still struggling with many of the same issues, although the insurance debacle was handled and there was no collections that resulted...thankfully!  We are learning new things about Bean's care each month it seems...and I'm sure that will continue for her whole life.  I still need to get more organized.  We are still constantly looking for additional sources of income and often short on money and time.  We are still driving three and a half hours to doctor appointments (in fact, I have one tomorrow for heart clinic) on average once a month.  We have been lucky in that the germs have not caught up with us yet - no flu last year, just a slight cold that she got over very fast.  We are hoping for the same this year!  I hope that this blog has been of help to someone and I am always surprised when someone writes to me saying they enjoy reading it!  So, I want to blog more often, get more people to visit and read and hopefully give something to them of value in return for that visit!  I want to include more pictures, more information about transplant and pediatric heart problems, especially cardiomyopathy.  I want to blog about the things I learn along this journey in the hopes I can make that learning curve faster and easier for someone who is following a similar journey.  And in addition, I want to highlight our wonderful life with Bean, which I know is a gift that we can not appreciate enough...

So, I'm happy to be doing this program and I hope that it will help me do just what the blog says it is designed to do:  "get me back into a posting and commenting routine now that summer is over."  I think I could say that I am hoping it gets me into a posting and commenting routine that I never once established since this blog began!  Its a challenge...but, I feel motivated!   

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...