My little miracle

This precious child you see is Charlotte. If you're my friend, you know her! This picture depicts her personality perfectly! I wanted to share, for any of you that may not know, a little of her story.


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!

Comments

Post a Comment

Popular posts from this blog

Angry Mom

  I attended a tea party meeting Monday night to speak out against the real issues our kids are facing. I expected to be surrounded by many people with very different opinions and beliefs, but what I wasn’t expecting was to hear them talking about how masks and vaccines are still two of the challenges we’re facing. As a mom of two daughters in school, I’m tired of listening to groups claiming to care about children but doing nothing about the real problems our children are facing. The number one killer of our children is guns. Not books, not drag queens, but guns. Republicans are choosing to literally let our children die on this hill and continue watching them be murdered in schools across our country because you are more concerned with believing that your child will decide they are gay or trans and not do anything about the gun violence that is a real threat. Teachers are not indoctrinating your children. Teachers are trying to keep our children alive and hopefully help them learn an
Read more

The Evangelical Church

Image
                 The evangelical church is the downfall of America. While Christianity itself is on the decline, we have adopted too many of the “values” and “standards” of the American evangelical church. We’ve allowed too many laws and court decisions to be based on what evangelicals want. So many people were scared of a country run under Sharia law, but evangelical law is not much better.             Evangelicals have always used the Bible to mistreat and hate women and marginalized communities. Women have long been viewed as the “weaker vessel” and not allowed positions of authority and in some cases, not even allowed to speak in churches. Girls are taught, from a very young age, that they must remain pure for their future spouses or they’ll be damaged goods that no man could want. The hatred and violence towards drag queens and the LGBTQ community also directly stems from teachings of many churches. In many states, a rapist has more rights than the person they rape and men often
Read more

"Swim"

It amazes me how silly things my child does can really make me think about things. My mom planted a flower bed last week and put a fountain in it. The fountain has a large "basin" where the water collects. After church Sunday, we went to Mimi's house and she gave Anabeth a cabbage patch baby. After we ate lunch, some of the family went outside to help put up a shade. Anabeth decided to go with them and take her new baby. I saw Anabeth playing in the water...Mimi has a large beach ball type thing that connects to the hose and water comes out in multiple places...so when they asked if I'd seen my child, I said yes assuming that's what they were talking about. No, my child decided to take her baby by the feet, drop her into the "basin" of Mimi's fountain and tell her to swim. She proceeds to keep dunking her head first into the water over and over. This got me thinking about life. Since December, my life has been more of a roller coaster than normal and
Read more