Our daughter, Trinity, was born in 2004 with a condition known as Proximal Femoral Focal Deficiency or PFFD. This condition is also known as C.F.D., congenital Femoral Deficiency. In 2009 we began our journey to save her little leg in Baltimore Maryland with Dr. Standard.
Been a while since I've updated, again. Over the next few days my goal is to give a good update over everything from the last almost two years! I'm going to break it down into different posts.
Waiting for Dr. S
Trinity's first lengthening was supposed
to happen in 2011 but we didn't make it until 2012. We had to reschedule twice
because of her becoming sick just days before surgery. We finally made it
January 17, 2012.
They gave her Happy Juice
It makes her happy
Getting ready to go back
When she was first put into her room after
surgery and she started to really wake up from anesthesia, both me and dad
had second thoughts about our decision. The fixator was terrifying and she
acted as if she were in horrific pain. I was so scared and full of regret as I
tried to comfort her. Normally after a surgery she bounces right back. This
one, however, her anxiety levels were through the roof.
After we finally left recovery
Not a happy girl :(
Doctor after doctor and nurse after nurse
came in to check on her, like usual. It usually isn't a problem, but this time
she had a huge chunk of metal attached to her leg that they wanted to see and
she didn't. She didn't want them to lift her blankets or touch her toes. She
didn't want them to do anything. I'm no stranger for feeling like a horrible
parent because of the path we chose for our daughter, but this was a new low. I
felt like a monster for doing this to her. What had I been thinking??
This went on for the rest of the day while
she was awake. It was a nightmare. The next day, however, was a different
All this with no Happy Juice
Other than being tired and slightly
zombified from the meds, my sweet Trinity returned. She began talking to the
nurses and even asked them to show her the fixator. It was wrapped in a beige
colored cloth and they had to lift it up so she could see. She shrugged and
said, "Hm, cool."
My little zombie
Earth to Trinity...
I think that's when I finally started to breathe
again. Now, I'm not saying everything was all hunky-dory and easy going from
there. It was still hard at times, but my Trinity was back.
First time out of the bed
Had to walk down the hall and back before we could be released
Having Lunch while we wait on the shuttle
Her baby was hungry and thirsty, too Yummy! Grilled Cheese :) Dr. S told her to eat all the cheese she wanted!
Three days later we were on our way to the
Ronald McDonald House, our home for the next 3 months. She was SO excited to
ride on the shuttle. The day we left that was all she could talk about. The
shuttle drivers name is Gary, and she absolutely adored him. They became instant
buddies. We barely had introduced ourselves before she stretched out her arms
to give him a hug.
Gary giving Trinity a lift onto the shuttle
First shuttle ride to the Ronald McDonald House
Dad stayed with us the first week we were
at the house. He made adjusting to a fixator and walker in a new home so much
easier. It didn't take long for us to settle in, and it took even less time for
Trinity to decide she never wanted to leave the RMH.