.jpg)
Our trip to Stanford went well and Gwendolyn was such a trooper. All of the doctors are very pleased with how well Gwendolyn is doing, especially her stability and lack of illness (knock on wood). They all commented on how social she is, even with doctors. She especially likes when they listen to her with their stethoscope — she slyly smiles and touches their hand on her chest. They were thrilled with her steady weight gain and her growth and so we are not going to make any drastic changes right away. She is now 21.13 pounds and 33 inches long. I like the philosophy that seems shared by the different departments: if she is thriving, why make changes just for the sake of change? They calculated the calories, vitamins, etc, and while we are going to work toward a Soy Toddler Formula over several months, it will be a slow weaning process because she is receiving adequate nutrition already. We also want to go slowly in case she does not tolerate this new diet. We will also start adding in more juices and pureed food to help with digestion, but it all goes through her g-tube so thin mush is all she can handle. We are excited about the idea of giving her more natural food sources in her diet, but feel more comfortable that this will be supplemental and not her entire source of nutrients as we will have to experiment a bit to see what she can tolerate and what her g-tube can handle. We will also go very slowly with any new food introduction. There are many theories about food and how it impacts children with SMA, but we have found the “studies” are all family based with no medical research, which does not dismiss them but makes us nervous to completely switch gears when what we are doing is working for Gwendolyn. I wish someone would do a study on diet, but I guess even if there were major research studies, at the end of the day every child is different and what works for one child may be a disaster for another. What we do know is that nutrition is critical because children with SMA burn so many calories just to breathe that even minor changes can create a sudden crash. We saw this with Gwendolyn when her disease began progressing just after her diagnosis. Within just a few days it became more difficult for her to breastfeed because of the effort. Although she was getting some milk, she wasn't strong enough to feed herself adequately and even though she looked fat and healthy, she had no reserve energy. She turned blue in my arms and couldn't breathe. That marked the beginning of our second long hospitalization. Perhaps because of this experience, we are even more conscious of any change we make.
Our bums are still recovering from the long drive, but Gwendolyn was so cooperative that it was really an easy trip. Today we are having a mellow day watching movies and playing with dollies.