Lucy had a full year: cooking, reading, enjoying her cousins (2 of them new!), turning 8, spending a week at Rosemary Beach for her Make-A-Wish trip, being a flower girl, rocking 3rd grade at a new school, having fun with her brothers and playing with many new friends.
Medically, it was a difficult year. She struggled with constant pain and fatigue from her fall surgeries through April. She had eye surgery in the spring which was successful, but also painful to recover from. Her summer was more active, though her GI discomfort and headaches continued to disrupt through the fall. In September we received incredible news-- her MRI showed complete stability of the tumor one year out from surgery! We began the long-awaited growth hormone, but unfortunately, we had to stop it due to intensified headaches, which often disrupted her schoolday in addition to her back and stomach pain.
The good news: no growing tumor!! We are also very happy about all the resources we have available to help her now, including a neurologist who found a headache medicine and dose that finally is beginning to help, a holistic physical therapy team specializing in chronic pain, and a pediatric pain management physician. We hope to re-start the growth hormone soon, and feel hopeful 2014 will be a brighter, freer year for our brave, smart girl.
Thank you, dear friends, for each day you remember Lucy in your thoughts and prayers!
Here are some pictures of her year.
