It’s been seven months since my daughter Alexis had sleeve gastrectomy surgery at Cincinnati Children’s. Seeing as so much has changed for Alexis and our family in that time, I figured it was time to update the many people who followed Alexis’ story, helped us spread awareness of Hypothalamic Obesity and sent thoughts and prayers for her and our family on her big day. You were all so supportive and I’m thrilled to be able to share that to date, Alexis has lost about 55 pounds!
We’ve seen amazing progress in her overall medical stability. When we headed home from Cincinnati after the surgery, she was already off of her diabetes medications and from there, her health has steadily improved further. In the last 6 months, she has had zero hospital stays related to hypothalamic obesity, which is a record since her brain surgery three years ago.
After so many struggles with her emotions and feeling uncomfortable in her own skin, I’m grateful every day to see Alexis feeling much more comfortable and emotionally stable. Her confidence is emerging and I love every moment of it!
We’ve also seen wonderful growth in Alexis’ independence, strength and stamina. She started back to school in August after being homeschooled for the past couple of years, and is doing well. She loves her school work and even recently joined an after-school club. I’m so happy to be able to see her get back parts of her childhood that she once enjoyed so much but had lost while she was so sick.
Before her surgery, one of the things she most wanted to be able to do again was fit in a bathing suit and swim with her sister and brother. She accomplished both of those things in July and then even decided to try out the trampoline, which she tackled no problem. These things make this mommy’s heart happy because she is physically able, and because she is back in control of things that were out of her control just a few months ago.
Luckily, Alexis’ appetite has slowed some following the surgery, but she is still hungry. The difference is she is able to feel the “full” feeling. It might not last long, but it is enough to help her know that her body doesn’t need all of the food her brain is telling her to eat.
I’m always proud and amazed by Alexis, but this procedure has showed me how determined and resilient she is. She has put everything she has into helping it be successful.
And it has been successful. She was very sick back in March and something had to be done or she could have lost her life. The sleeve gastrectomy gave her back her health. It’s impossible to know how successful it will be long-term, but we are all cautiously hopeful that she will not need another surgery. If she does, we’ll address it when it becomes important to do so.
We are currently checking in with her team at Cincinnati Children’s every three months for normal check-up things and to collect data that will hopefully help other kids who are in a similar journey. Alexis’ determination and desire to help other kids with hypothalamic obesity is unwavering. She has committed to tell her story with hope that it will inspire other kids to keep looking for the help they need.
Seven months ago, we were a family struggling each and every day to keep Alexis’ quality of life the best we could. I was scared to death every night! Now, not only has she gained her independence, I have too! With the help of Dr. Inge and his team at Cincinnati Children’s, as well as Alexis’ supporters near and far, the huge disruption to our family life has been dramatically reduced because food does not rule our lives.
Alexis can enjoy things without thinking of food all the time. We can go to family, school and community functions now and not have to worry about the food or what people will say. I don’t know what the future holds but seeing the progress and the happy Alexis emerge out of this sleeve gastrectomy surgery has been the most amazing overwhelming feeling of joy! I am forever grateful to Dr. Inge and Dr. Helmrath. Cincinnati Children’s has been great to us. We can’t thank all the people who have read and followed our journey enough! If it wasn’t for all the support we might not be where we are today – and we’re extremely happy to be where we are today! Thank you for continuing to follow our journey.