“He lives life just like any other kid his age. He has no limitations and thanks to the low profile of his MiniONE® button, no one even knows he has it!”
Reid was born at 29 weeks, 6 days with his twin brother, Connor. He was well until he hit 4 weeks gestation. He then got the dreaded NEC (necrotizing enterocolitis). He fought for his life as his bowel perforated by the time he was diagnosed. Many, many surgeries later, after losing 75% of his small intestine and the top of his colon, he now lives with Short Bowel Syndrome.
After almost losing him 3 times, Reid finally left the NICU with a g-tube for continuous feeds and a central line in for TPN and liquids. He could not absorb my milk in large quantities, so that was the reason for the g-tube insertion.
We began with a competitor and were constantly “feeding the bed” and pulling his button out with his clothing. He is now 3.5 years old and still has a g-tube. He was able to get rid of his central line at age 2 and he can drink the majority of his formula. He has oral aversion which is common with kids with Short Bowel Syndrome. He does not eat many foods and will not take any of his routine medications by mouth. Our MiniONE® Button has saved his life many times!
He recently started preschool with his twin and was sick more times than I could count (only being in school 2 hours a day)! We used his AMT MiniONE ® Balloon Button for feedings since one of the first things he stops doing when he gets sick is drinking formula. If it weren’t for his button, we would be back in the hospital and on TPN/fluids.
I attended my first Short Bowel Syndrome Symposium in 2014, Atlanta. That is where I met and talked with the AMT rep. They explained to me the benefits of the MiniONE®; that it would lock in place and GLOW IN THE DARK! Also, that I could apply a small device (the AMT Clamp™) to keep it hooked to the infinity bag so that we no longer “fed the bed!” Our GI office (Cincinnati Children’s Intestinal Rehab) was more than happy to order an AMT MiniONE® for us to try.
From the moment we put it in, I loved it! It is so much lower profile and the locking mechanism has saved so much formula which has helped my son gain the weight he needs during overnight feeds. Also, during the symposium, our very kind rep had a beautiful bear that had a button in it, just like Reid! He said when he was done with his presentation that I could take it home. It seems so trivial, but giving your baby boy a toy that looks “like him” was an amazing moment. He saw that his bear had a button and he “helped me give meds” to him. It has been so great to teach Reid and his brother Connor about his button.
Anything that makes life seem “normal” is great! Ried has OT, PT and ST and is thriving! He runs and plays just like everyone else. He is smaller, but otherwise, no one would even know he has anything different in his belly. There will be a time, I am sure, that we will explain his button and we will work hard to make him feel like there is nothing wrong with his button and it’s so very special! He lives life just like any other kid his age. He has no limitations and thanks to the low profile of his MiniONE® button, no one even knows he has it!
Thank you AMT for all of the care and compassion you have shown us and for making such an amazing product.