Tuesday, September 18, 2012

When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile. 
~ Unknown 


The biopsy/lens implantation surgery turned out a success! Our Tiny Princess did not have to spend the night in the hospital, and her lens implantation is doing great.  It was very nerve racking hearing the anesthesiologist explain the complications from the anesthesia, and allowing her to have the surgery.  I cried about such a simple surgery for fear that it could cause life threatening damage.  My Superhero proved to be stronger then me as always.  

Now we have to wait for the results. We go about our daily routine of going to work, dropping the kids of at daycare, celebrating birthdays, planning to attend weddings, and celebrating holidays while having this little fear in the back of our minds about the unknown.  Will the results change how we love Our Tiny Princess? Of course not, but it does cause some stress and fear that cannot be avoided.  

Following the surgery, we looked at her discharge paperwork and noticed something quite different.  Our Tiny Princess has a different diagnosis then what we were originally told.  This was quite shocking to us because no one ever corrected us when we talked to the doctors.  

Left Ventricular Non-compacted Cardiomyopathy.  

Such a long diagnosis for such a little girl.  After researching the information, we have found that Dilated Cardiomyopthy is often times the wrong diagnosis that they give children with Left Ventricular Non-Compacted Cardiomyopathy (LVNC).  The treatment doesn't change, just the name and the rarity of her condition does.  It also explains the reason behind the biopsy, and the possible genetic link to her condition. 

With each new finding and each new test, we still hold on strong for Ella.  Life is always going to be full of surprises and changes for everyone, how you handle each situation makes you who you are. 

No comments:

Post a Comment