This week we'll be making our semi-annual trip to the Blue Bird Rett Clinic in Houston to visit Reagan's Rett Specialists (Neurologist and Gastrointestinal Physician). Our last trip to these specialist was in April and it was also our first visit, haven only been new to Rett Syndrome for 3 months. I have learned so much about Rett Syndrome since that visit, from both our experiences and the advice and wisdom of my wonderful Rett family. I am really looking forward to talking with these specialists once again and hopefully hearing some first hand information about our CURE!
The only part of the visit that I am not looking forward to as much would be the weight check part. I don't know one Rett family that does not struggle with getting their child to gain weight, no matter the severity in which they suffer with Rett. It is such a dreadful conversation to have with the Doctor, talks of optional feeding measurements such as a feeding tube. I know that I want to do everything possible to prevent Reagan from needing to go this route, yet everyone that has had the procedure done for their child has only one regret, not doing it sooner. So, it sounds like my decision is not logical at all, but completely emotional.
Reagan has gained 2 pounds since April, which seems close to the 3 pounds requested so I am hoping the Doctor will be somewhat satisfied. I am happy enough with her weight gain especially knowing now that she had mono for the past few months and one of the symptoms is a decrease in appetite...just great! But trust me, the slow weight gain is not because of our lack of trying. I have tried to take some of the guilt off of my shoulders for her not eating, thanks to her Nutritionist's advice. I can not force her to eat. I can only provide the opportunities and best foods and the choice is hers. So, I will do my best to take the possibly scrutiny of her weight in stride!
Abby's first visit to Boston for the IGF-1 Trial
4 years ago