Six Months and Beyond

In December of 2021, in Dr. Patel's office, I did not foresee the magnitude of this surgery. I was unaware of how much my face would change, of the 10.5-inch scar on my left thigh, or that I would wake up with a tracheostomy. Going into surgery, I understood that my medical team would be changing the titanium mesh I had since I was 17 and was now exposed due to my skin opening. I understood that this surgery was anything but cosmetic. I needed to have this surgery to prevent the infection that caused my skin to open from spreading to my brain, and potentially the same infection I currently have and the reason I still have two minor wounds on my incision site. And so, I am six months post-surgery, and despite some minor complications, I am healthy and happy. 

Willis Tower

 Even though I have primarily focused on healing from major surgery this year, I have experienced memorable and beautiful moments outside my recovery from this operation. I applied for a scholarship to attend the Children's Tumor Foundation's NF Summit in Chicago
in mid-May. The week of my birthday in June, I received an email informing me that I was one of the scholarship recipients. Tears of joy rolled down my face as I read my award email; I was awarded all summit costs, including airfare. 

Fellow NF Heros, NF Summit, Chicago, Illinois

On July 21st, I boarded a flight for the first time since 2018, headed to Chicago, Illinois; I was excited about what was to come. What followed were five days filled with self-discovery, networking, and learning the latest updates on NF. I met beautiful people who, like myself, are battling this relentless condition, we met because we all share NF, but we connected because we love life despite NF. I believe that one day there will be a cure for NF. I believe that one day, no other little girl will be called a monster for having a facial difference. I believe in a life without NF. Until this day arrives, I will advocate and share my NF journey. 

In other news, I am in the process of getting a new prosthetic! My current eye is over ten years old and no longer fits well. As in, it has fallen out! I don't mind as much if it falls out at home, but falling out in restaurants or a park, as it has recently, is another story. Randy, my ocularist, has me excited with the prospects of my new eye. The new and improved prosthetic will be smaller and lay flatter, which will allow for more movement. He says that changing the size and how it fits will make the eye appear more realistic. If all goes well, I should have a "pretend" eye, as my niece calls it, by early September. 

**Stay tuned. Big things are happening**😉