Reagan will be having surgery on August 24th in Houston for the gastric feeding tube (g-tube). There are two things that are shocking to me right now: 1) that we are doing this procedure so early in her life, and 2) that I can not get past the emotions of having to feed my daughter by an alternate method.
Yes, I have read a lot about g-tubes and have heard a lot of personal stories from my Rett families. I knew that it would be something we would have to do for Reagan eventually since it seems that at least 80% of children with Rett have a g-tube. Yet, I thought she would be older before her eating declined this much. It is bizarre to me that just 1 1/2 years ago she was feeding herself table foods, which progressed into us feeding her table food, and then soft food and then purees and now refusing almost all foods. I was naive to think that we could do the temporary feeding tube and then coast on the increased weight for months until I came to grip with this decision. But we have only had the ng-tube removed for a week and she is already starting to slide backwards in weight.
I go back and forth between thoughts of 'this should not be something that my 3 1/2 year has to go through' and 'well, it's really not that big of a deal'. I know that this is the right decision. We must keep her healthy as possible until a cure if found. Being underweight and malnourished leaves her more susceptible to getting sick, especially since she is in school and exposed to different germs. Can someone please send my heart the message though?
Abby's first visit to Boston for the IGF-1 Trial
3 years ago