Baby Kennedy

Baby Kennedy

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.

1 comment:

  1. When I see pictures of Kennedy, its hard to believe she's the same little angel that laid in that hospital bed. God is amazing! I'm so happy for you and your family that she has exceeded beyond diagnosis. I knew she was a strong little girl and had the power of God and the love and support of many! As for you and your health, I'm truly sorry that you had to endure this pain. But God knew that he had already given you the best of him when he gave you Kennedy. Glad you are doing well now, keep you head up and your faith strong....We love and miss you all!