My little miracle
First, I have to say that this sweet girl definitely has some of her Mimi's traits in her! I've never met anyone, outside of the two of them, that could smile through any situation! Charlotte's story is a powerful story of an unplanned, but very wanted, baby that has overcome so many obstacles and already has her journey changing people's lives! It's been more difficult for me because in the past, I would always have my mom by my side to get me through really hard times and I haven't had that for over 4 years now. When we found out there was something wrong with Charlotte, I was just around 20 weeks pregnant and at our gender reveal ultrasound. They didn't know what exactly was wrong until after she was born. She lived in Orlando for 7 of the first 8 weeks of her life, after being transferred from here in Jacksonville at a week old. I believe her doctor said she had around 15 procedures in that time. She was born with macrocystic lymphatic malformation consuming her abdomen and crushing her organs. By 6 months old, we had this under control and there was practically no evidence of the malformation that was supposed to take 2-3 years to treat. Her pediatrician did notice that her left leg was growing faster...length and circumference. She was diagnosed with Klippel-trenaunay syndrome and we were told she'll eventually have to have surgery to correct the length discrepancy. This past summer, after having a completely clean MRI in January, we decided to try and take her off of the medication that had been used to help treat the cysts in her abdomen. Unfortunately, a few weeks ago, her abdomen got drastically larger again. We restarted the medication, but it can take up to a month to be effective. We ended up taking her to the hospital in Orlando on Sunday, after her belly grew from 53-58 cm in a week's time. They drained the fluid and determined that she doesn't have cysts large enough to treat, but they're leaking fluid and causing her belly to grow. We were able to come home Tuesday and her belly and everything were looking good. Yesterday, we had a follow-up appointment and her belly was back up to 57 cm. With nothing to lose, I asked about trying her on a steroid to see if it would accelerate the other medication...her doctor in Orlando had mentioned when she was still a baby that in a flair up situation, steroids can be effective in a quick relief. We started the prednisone last night and this morning, her belly was already down to 51 cm. Her left leg is still larger than normal and we're working on that, but she's starting to urinate more and eat better again, so I definitely think we're on the right track. I created a booster page so that anyone that wished to support us could. I wanted to do the t-shirts because I thought it would be nice to have people all around, wearing t-shirts for Charlotte! The money that's raised will go directly to pay Charlotte's medical bills and any left over will be donated to the Nemours Foundation to help other children like her! If you'd like a shirt or just to donate, you can go to www.booster.com/charlottessidekick and order one or more! The campaign runs for 4 weeks and the shirts will be delivered to your home or mine by December 28th. If you order a shirt, I'd like to ask that you wear it on January 7...Charlotte's birthday...and share a picture! We appreciate all of the prayers that have been said for us and we know that her story is going to continue to grow and help more people everywhere!