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. 

"Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough troubles of its own." Matthew 6:24, The Bible

Tomorrow is finally the day for her biopsy.  It has been a very long wait due to the fact that we are trying to schedule an eye surgery at the same time. The eye surgery seems like a needless procedure to some people because of her condition, but we are preparing her for a very long life.  We want her to be able to see as normally as possible when she gets older.  We treat her like she will live until she is old and gray.  I will admit that I assumed this would not be a difficult task because all the doctors are in the hospital, why can't they just do two surgeries at the same time?  Apparently this is very hard to coordinate due to different operating days for the surgeons, finding a cardiac anesthesiologist, and finding an OR with the right equipment to preform both surgeries.  

Another difficult task was finding a surgeon willing to preform the muscle biopsy.  From what I can gather, this is a simple procedure where they take a small amount of muscle from the leg.  However, it's the condition of her heart that is being questioned.  One nurse admitted that fragile hearts like Ella's scare most nurses and doctors that are not cardiologists.  

Hearing this really engraved in my mind how incredibly lucky we really are that Ella is doing so well.  I've heard it time and time again, people look at her chart and ask, "How long have you been on the transplant list?"  When we tell them we aren't, they look at Ella in shock.  "She's doing great right now.  She's a fighter.  There is not a need to put her on the list when she would be at the very bottom."  That is what I tell people with a smile.  I'm so grateful to be able to have every moment I do with her knowing we are on borrowed time.  I'm very lucky and blessed knowing that there are so many other parents out there that don't get the time we have with her.  So many parents would kill for just one more day, and we have had close to a year.  I thank God every day we have her.  We live each day to the fullest that we can.  We play with her, cuddle her, and love her every moment. 

She is our Tiny Princess Warrior! Hear her squeal!