Rachel had surgery at Primary Children's today to have her feeding tube button taken out and closed up. When she had this tube put in back in January 2017, almost five years ago, I never thought this day would come. This has been one of the many miracles that we have witnessed as we have traveled the road of having three children with the degenerative disease of ataxia-telangiectasia (A-T). I know that our angel "Larry" was smiling down from heaven today and will continue to watch over our family and these incredible children. Rachel has a lot of anxiety in relation to medical procedures. She said that she prayed for her dad to be with her at the hospital and she said that she could feel his presence there with her.❤😇
Rachel January 2017 (6 1/2 years old). The feeding tube that Rachel had placed was such a blessing to her. After years of agonizing over this decision, and watching Rachel struggle to thrive, we made the very hard and gut-wrenching decision to have the surgery to have this tube placed. This was one of the best decisions we every made. Rachel gained 25 pounds the first year. The supplemental feedings also helped her to have a lot more energy. She did the feedings at school during the day and at home in the evenings.
When Larry's health took a sharp decline in 2021 so many things in my life went to the back burner, including keeping up on Rachel's tube feedings. When Larry passed Rachel had went a good year without having them and she miraculously was still growing and had fairly good energy levels.
Even though the tube has been a blessing it has also been somewhat of a nuisance when she does things like dance, ski, or try to put on a harness so that she can rock climb. She has also been very guarded of her stomach as it can be very painful if she gets hit wrong.
About a month after Larry passed Rachel ask me about having her tube removed. I was very hesitant about doing this as it is so much work to get the tube established, especially the first year which included many trips back to Primary Children's to have her tube replaced when it came out. I finally agreed to meet with the doctor at Primary's about it. He thought taking it out was a great idea because Rachel's growth looked great and she was doing a lot better with her ability to eat.
Her surgery went really well and Rachel is really looking forward to her new life without having this button in her stomach. We are so grateful for this Christmas Miracle!
Rachel meeting with doctor and picture of her button.
Rachel before and after surgery. The doctor told us that she should be completely healed from the surgery within a few weeks.
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