Alexis Shapiro Update: 7 months Post-Surgery

Alexis

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.

Jenny Shapiro

About the Author: Jenny Shapiro

Jenny and her family - husband Ian and kids Alexis, Kayley and Ethan - live in Cibolo, Texas. Through her daughter Alexis's experience with hypothalamic obesity, Jenny has become an advocate for Alexis and kids like her who have the often misunderstood condition.

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Comments

  1. Marsha Herron November 10, 14:13
    Great picture of Alexis. Thank you so much for keeping us updated. Always so wonderful to hear about her positively moving forward and what miraculous results from the surgery. God bless you all.
  2. michelle November 10, 15:36
    You are each an inspiration. Love, comfort and good health to all. Cheers and as always, thank you for sharing this amazing journey of such brave folk.
  3. Courtney Otte November 10, 16:49
    What an inspiration! ! I had my surgery on April 9. She's such a brave girl...and a lucky one to have such a great family,supporters and doctors to cheer her on!
  4. Cortney Downing November 10, 17:00
    It gives me so much hope for my daughter Willah, when I see Alexis :-) They share the same battle! You and your warrior princess are in my thoughts and prayers, always. Thank you for the great update!!
  5. Ginny Carr November 10, 21:55
    Thanks for the update. So happy to see Alexis with a sparkle in her eye! It's great to hear that you are all doing so much better and that your family can enjoy life again. Keep up the good work, Jenny and family!!
  6. Cynthia anderson November 10, 22:59
    Alexis, you give me such hope and I am so blessed and thankful that you have shared such great stories about your incredible life!!! Thank you! With love and much respect, Cynthia
  7. Lynda Renham November 11, 16:49
    So thrilled to read this. I am Naomi Cook's stepmother and gives us such hope for Hana when reading your story. I watched your video with tears in my eyes. You are all so strong. Much love and positivity to you. xx
  8. Robyn Blake November 11, 22:54
    Jenny and Alexis, Praise the Lord for your success. Your story is such an inspiration. Thanks for the updates. Your story is close to my heart, I had a niece that had the same problem (Jessica Murphy). Have prayed for you and will continue With love, Robyn Blake
  9. Charlotte November 17, 09:24
    Alexis you ROCK!!!
  10. […] a post on the Cincinnati Children’s Hospital website, Jenny Shapiro said her daughter lost at least 55 pounds and no longer needed to take medication […]
  11. […] a post on the Cincinnati Children’s Hospital website, Jenny Shapiro said her daughter lost at least 55 pounds and no longer needed to take medication […]
  12. thomas kaup December 13, 19:22
    Was the benign tumor a colloid cyst of the third ventricle. I had this surgery and have gained a lot of weight and have been telling the doctors of the close connection of this tumor and hunger. No one seems to take me seriously. Would very much appreciate a reply. Tom
    • Kate Setter
      Kate Setter December 13, 21:24
      Hi Tom - The tumor that Alexis had was a craniopharyngioma. Hope that might help! -Kate at Cincinnati Children's
  13. […] a post on the Cincinnati Children’s Hospital website, Jenny Shapiro said her daughter lost at least 55 pounds and no longer needed to take medication […]
  14. […] a post on the Cincinnati Children’s Hospital website, Jenny Shapiro said her daughter lost at least 55 pounds and no longer needed to take medication […]
  15. […] a post on a Cincinnati Children’s Hospital website, Jenny Shapiro pronounced her daughter mislaid during slightest 55 pounds and no longer […]
  16. […] a post on the Cincinnati Children’s Hospital website, Jenny Shapiro said her daughter lost at least 55 pounds and no longer needed to take medication […]
  17. […] a post on a Cincinnati Children’s Hospital website, Jenny Shapiro pronounced her daughter mislaid during slightest 55 pounds and no longer […]
  18. Michele Fagiano December 14, 12:31
    What an awesome girl and kudos to her family for fighting for their daughter. Weight loss surgeries are life saving- not only for your physical health but for your mental well being. Congratulations Alexis! You will have the life you deserve with the help of your loving family and excellent physicians!
  19. Michele Reardon December 14, 19:46
    I have been longing to hear how Alexis is feeling! I am so happy she is doing well!! Jenny how are you doing? I know from experience what you are going through. My daughter had just turned 8 yrs. old when she was diagnosed with juvenile pilocytic astrocytoma at Boston Children's Hospital. She had a very large tumor and thankfully it was benign. They removed the whole tumor. Since that date she has also gained a lot of weight and has some short term memory issues and a tremor in her right hand. She has other sleeping and attention issues also (minor). She is not the same little girl in many ways, but I am so thankful she is alive! Please contact me if I can help in any way. Best wishes and prayers to you, Alexis and your family. We are at 22 months post-op.
  20. Michele Reardon December 14, 19:51
    I forgot to mention, my daughter look so much like Alexis. She has (now) curly red hair and freckles too!
  21. […] a post on the Cincinnati Children’s Hospital website, Jenny Shapiro said her daughter lost at least 55 pounds and no longer needed to take medication […]
  22. […] a post on the Cincinnati Children’s Hospital website, Jenny Shapiro said her daughter lost at least 55 pounds and no longer needed to take medication […]
  23. […] a post on the Cincinnati Children’s Hospital website, Jenny Shapiro said her daughter lost at least 55 pounds and no longer needed to take medication […]
  24. […] post regular updates on their Facebook page called Hope and love for Alexis and recently wrote a post-surgery blog post on the Cincinnati Children’s Hospital […]
  25. […] post regular updates on their Facebook page called Hope and love for Alexis and recently wrote a post-surgery blog post on the Cincinnati Children’s Hospital […]
  26. […] a post on a Cincinnati Children’s Hospital website, Jenny Shapiro pronounced her daughter mislaid during slightest 55 pounds and no longer […]
  27. […] unchanging updates on their Facebook page called Hope and adore for Alexis and recently wrote a post-surgery blog post on a Cincinnati Children’s Hospital […]
  28. […] post regular updates on their Facebook page called Hope and love for Alexis and recently wrote a post-surgery blog post on the Cincinnati Children’s Hospital […]
  29. […] post regular updates on their Facebook page called Hope and love for Alexis and recently wrote a post-surgery blog post on the Cincinnati Children’s Hospital […]
  30. Roz December 26, 23:39
    Our son Josh was diagnosed with a craniopharyngioma at age 3 years, 4 months. That was nearly 25 years ago. We were told about the obesity issue and, sure enough, within a few days, the problem started. By some miracle, after a short amount of time, it resolved itself. We lost our beloved son less than 10 months ago, just 2 days after his 27th birthday. He had just started teaching school in Barcelona, Spain, became very sick, and died in his sleep. We've been trying to deal with this tragic loss of our baby boy. He really was a wonderful son. I was so happy to read about your daughter's progress and hope and pray that things continue to go well for her. I know it's a tough road. Please know that I am here if you EVER feel like talking and need some support. I mean it. And, by the way, I live in Cleveland and Univ. of Cin. is my alma mater!
  31. […] a post on a Cincinnati Children’s Hospital website, Jenny Shapiro pronounced her daughter mislaid during slightest 55 pounds and no longer […]
  32. Chris Chastain December 29, 22:45
    So proud of Alexis! How brave for someone her age to undergo such a procedure. So glad she has gotten off to a successful start. She will do great!!! A big thumbs up from a fellow post-op.
  33. […] a post on a Cincinnati Children’s Hospital website, Jenny Shapiro pronounced her daughter mislaid during slightest 55 pounds and no longer […]
  34. […] to keep Alexis’ quality of life the best we could,” said her mother Janet Shapiro in an update on the Cincinnati Children’t […]
  35. Aunty Caz. July 29, 02:02
    I came upon Alexis' story as I was roaming the internet and had to find out how this beautiful, strong little girl was progressing. I am so glad that you are posting updates and it is wonderful to share in her journey. You may not know when the support and heartfelt blessings are coming your way Alexis but they are. Keep fighting, you have been given a tool that is able to help you but the strength to maintain the function of this tool must come from you. There will be days when the hunger in your mind seems impossible to control but those are the days that you need to remember that you have a very long life ahead of you. You are young and you have so much to look forward to. Being healthy is the best gift we can give ourselves. If you do not look after this body....Where else will you live? All the best little soldier.