Baby Kennedy

Baby Kennedy

Sunday, April 8, 2012

Remembering last Easter...

As I sit by the beach on this beautiful morning, remembering where we were last year for Easter is not far from mind. Last Easter, our little family spent much of the holiday at Duke Children's Hospital following spinal cord surgery. I remember feeling much joy that my daughter was being discharged from the hospital but I also remembering a lot of fear to take my fragile daughter home with this massive wound on her back. I was afraid to hold her, let anyone else hold her, and even to lay her down for a nap.

Today she's swimming, jumping, and following her cousins around as fast as she can. My heart and prayers are with all the families at Duke this Easter. We send our best wishes that tomorrow will be better.

Monday, March 19, 2012

One year post diagnosis

Wow! Crazy to think that one year ago we had just learned of our daughter's tethered spinal cord diagnosis. Today, we run, jump, play, tickle, and celebrate every milestone! Kennedy's latest fascination is running up and down the hallway of our new home shouting "Kennedy fast!" To all of the other tcs parents out there awaiting your surgery, breathe. Despite what you read on the Internet, there are good outcomes. Trust yourself and your decisions. Although our story is a successful one and I want to share that, my heart hurts everyday thinking of others going through the constant struggle associated with this diagnosis. My platform is early prevention when possible. For my family, it was the right decision.

In the past year, Kennedy had her tcs release surgery at Duke Children's Hospital which required a week stay, which five of the days were laying completely flat. After that, Kennedy had another MRI to view the healing and to get a baseline for her after-surgery status in case we are ever concerned about future symptoms associated with retethering. We had a few three month follow ups and most recently six month appointments with hopes of being released to yearly appointments in September. Today, people would never know Kennedy had surgery unless they see her scar or hear me talk about it. Kennedy is not in pain and is advanced in developmental milestones.

The past year has also consisted of another struggle, thought we realize everyone has their own important struggles too. After several surgeries and procedures, I ended up being diagnosed with Ashermans syndrome and had to have a hysterectomy this past November. I'm feeling better everyday and am thankful for my health. My emotional journey has been difficult in 2011 but I genuinely adore my family, my life, my friends, my career, and my health and beyond that... I don't worry!

Love to you all! Thank you for all of our love and support! We couldn't have made it here without you.